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HIV/AIDS surveillance in Europe2023 data2024HIV/AIDS surveillance in Europe2023 data2024iiSURVEILLANCE REPORTHIV/AIDS surveillance in Europe 2024 2023 dataECDC PDFISBN 978-92-9498-757-0ISSN 2363-3085doi 10.2900/3113714TQ-01-24-013-EN-NWHO PDFISBN 978-92-8906-155-1AbstractHIV infection continues to affect the health and well-being of nearly 2.6 million people in the WHO European Region,particularly in the eastern part of the Region.This report is the latest in a series published jointly by the European Centre for Disease Prevention and Control(ECDC)and the WHO Regional Office for Europe that has been reporting data on HIV and AIDS in the WHO European Region and in the European Union and European Economic Area(EU/EEA)since 2007.It finds that while epidemic patterns and trends vary widely across European countries,nearly 113 000 people were diagnosed with HIV in the European Region in 2023,including around 25 000 in the EU/EEA.KeywordsACQUIRED IMMUNODEFICIENCY SYNDROME EPIDEMIOLOGYAIDS PREVENTION AND CONTROLDISEASE OUTBREAKS STATISTICSHIV INFECTIONS EPIDEMIOLOGYPOPULATION SURVEILLANCE World Health Organization 2024Some rights reserved.This work is available under the Creative Commons Attribution-NonCommercial-ShareAlike 3.0IGO licence(CCBY-NC-SA3.0IGO;https:/creativecommons.org/licenses/by-nc-sa/3.0/igo).Under the terms of this licence,you may copy,redistribute and adapt the work for non-commercial purposes,provided the work is appropriately cited,as indicated below.In any use of this work,there should be no suggestion that WHO endorses any specific organization,products or services.The use of the WHO logo is not permitted.If you adapt the work,then you must license your work under the same or equivalent Creative Commons licence.If you create a translation of this work,you should add the following disclaimer along with the suggested citation:“This translation was not created by the World Health Organization(WHO).WHO is not responsible for the content or accuracy of 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included in this publication are World Health Organization 2024.Reproduction or translation of substantial portions of the maps require explicit,prior authorization of WHO.To request permission to use the maps,please complete the permissions form available by this link:https:/www.who.int/about/who-we-are/publishing-policies/permissions.General disclaimers.The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of WHO concerning the legal status of any country,territory,city or area or of its authorities,or concerning the delimitation of its frontiers or boundaries.Dotted and dashed lines on maps represent approximate border lines for which there may not yet be full agreement.The mention of specific companies or of certain manufacturers products does not imply that they are endorsed or recommended by WHO in preference to others of a similar nature that are not mentioned.Errors and omissions excepted,the names of proprietary products are distinguished by initial capital letters.All reasonable precautions have been taken by WHO to verify the information contained in this publication.However,the published material is being distributed without warranty of any kind,either expressed or implied.The responsibility for the interpretation and use of the material lies with the reader.In no event shall WHO be liable for damages arising from its use.The WHO Regional Office for Europe is responsible for the accuracy of the translation of the Russian summary.European Centre for Disease Prevention and Control 2024This publication follows WHO terminological practice.The names and designations of countries used in this publication should not be understood as an endorsement by ECDC of the terminology used.The designations used,and the presentation of the maps therein,do not represent ECDCs official position on the legal status of any country,territory,city or area or of its authorities,or the delimitation of its frontiers and boundaries.Cover picture:NIAIDSuggested citation for full report.WHO Regional Office for Europe,European Centre for Disease Prevention and Control.HIV/AIDS surveillance in Europe 2024 2023 data.Copenhagen:WHO Regional Office for Europe;2024.Suggested citation for tables and figures.WHO Regional Office for Europe,European Centre for Disease Prevention and Control.HIV/AIDS surveillance in Europe 2024 2023 data.iiiHIV/AIDS surveillance in Europe 2024 2023 dataSURVEILLANCE REPORTContentsAcknowledgements.viAbbreviations.viiOverview of HIV and AIDS in Europe .ix -/.xvii1.HIV and AIDS in the EU/EEA.11.1 HIV diagnoses.11.2 Previous positive diagnoses.71.3 Trends in HIV diagnoses.91.4 AIDS cases,morbidity and mortality.121.5 HIV testing.142.HIV and AIDS in the WHO European Region.182.1 HIV and AIDS diagnoses in the WHO European Region.182.2 HIV testing.272.3 Conclusions.28Tables.31Maps.61Annexes.66FiguresFig.A.Estimated new HIV infections and reported new HIV diagnoses in the EU/EEA and WHO European Region,20142023 .xFig.B.Proportion of people diagnosed late(CD4 cell count 350 per mm3)by gender,age and transmission mode,WHO European Region,2023 .x.A.-/,20142023.xviii.B.(%)(CD4 350/3),2023.xixFig.1.1.Male-to-female ratio in HIV diagnoses,by country,EU/EEA,2023(n=24 481).1Fig.1.2.Age-and gender-specific rates of HIV diagnoses per 100 000 population,EU/EEA,2023(n=24 393).2Fig.1.3.HIV diagnoses,by age group and transmission mode,EU/EEA,2023(n=18003).2Fig.1.4.Percentage of HIV diagnoses,by country and age group,EU/EEA,2023(n=24 617).3Fig.1.5.Percentage by transmission mode and country,HIV diagnoses with known mode of transmission,EU/EEA,2023(n=17757).4Fig.1.6.Percentage of HIV diagnoses among migrants out of all reported cases with known information on theregion of origin,by country of report,EU/EEA,2023(n=21 230).5Fig.1.7.CD4 cell count cells per mm3 at HIV diagnosis and acute infection,by transmission mode,EU/EEA,2023 (n=11961).6Fig.1.8.Percentage of people diagnosed late(CD4 cell count 350 per mm3)by demographic,EU/EEA,2023(n=11961).6Fig.1.9.Linkage to care after HIV diagnosis in the EU/EEA,individuals diagnosed with HIV 20222023(n=6722).7Fig.1.10.Percentage of previous positive diagnoses and new HIV diagnoses by country of report,21EU/EEA countries,2023(n=15150).8Fig.1.11.Demographic and epidemiological characteristics of previous positive diagnoses and new HIV diagnoses by 21 EU/EEA countries,2023(n=15150).9Fig.1.12.Temporal trends in HIV diagnoses reported by 21 EU/EEA countries:comparison of trends including and excluding previous positive diagnoses,20142023(n=152157).10ivSURVEILLANCE REPORTHIV/AIDS surveillance in Europe 2024 2023 dataFig.1.13.People diagnosed with HIV,AIDS and AIDS-related deaths reported per 100000 population,EU/EEA,20142023.10Fig.1.14a.Age-specific trends in HIV diagnoses in women,20142023.10Fig.1.14b.Age-specific trends in HIV diagnoses in men,20142023.11Fig.1.15.Percentage of diagnoses among people born outside of the reporting country by year of diagnosis and region of origin,EU/EEA,20142023.11Fig.1.16a.HIV diagnoses,by year of diagnosis and transmission mode,EU/EEA,20142023.12Fig.1.16b.Percentage of HIV diagnoses,by year of diagnosis and transmission mode,EU/EEA,20142023.12Fig.1.17.HIV diagnoses,by year of diagnosis,transmission mode and migration status,EU/EEA,20142023.12Fig.1.18.HIV diagnoses,acute infection or CD4 cell count per mm3 at diagnosis,EU/EEA,20142023 .13Fig.1.19.AIDS diagnoses,by transmission mode,EU/EEA,20142023.14Fig.2.1.Percentage of HIV diagnoses by country and age group,WHO European Region,2023(n=112 768).19Fig.2.2.Percentage of HIV diagnoses with known mode of transmission,by transmission route and country,WHO European Region,2023(n=101278).20Fig.2.3.HIV diagnoses,by age group and transmission mode,WHO European Region,2023(n=100 268).21Fig.2.4.HIV diagnoses,by CD4 cell count per mm3 at diagnosis and transmission mode,WHO European Region,2023.23Fig.2.5.HIV diagnoses per 100000 population,by year of diagnosis,WHO European Region,20142023.24Fig.2.6.HIV diagnoses,by transmission mode and year of diagnosis,WHO European Region,20142023.24Fig.2.7.HIV diagnoses,by transmission mode and year of diagnosis,east of the WHO European Region,20142023.24Fig.2.8.HIV diagnoses,by transmission mode and year of diagnosis,centre of the WHO European Region,20142023.25Fig.2.9.HIV diagnoses,by transmission mode and year of diagnosis,west of the WHO European Region,20142023.25Fig.2.10.AIDS diagnoses per 100000 population,by subregion and year of diagnosis,WHO European Region,20142023.27TablesTableA.Characteristics of new HIV and AIDS diagnoses reported in the WHO European Region,the west,centre and east of the WHO European Region,and the EU/EEA,2023 .ix A.-,/,2023.xviiTable1.HIV diagnoses and rates per 100 000 population,by country and year of diagnosis(20142023)and cumulative totals,in EU/EEA and other countries of the WHO European Region.32Table2.HIV diagnoses in males and rates per 100 000 male population,by country and year of diagnosis(20142023)and cumulative totals,in EU/EEA and other countries of the WHO European Region.34Table3.HIV diagnoses in females and rates per 100 000 female population,by country and year of diagnosis(20142023)and cumulative totals,in EU/EEA and other countries of the WHO European Region.36Table4.HIV diagnoses in males who acquired HIV through sex with men,by country and year of diagnosis (20142023)and cumulative totals,in EU/EEA and other countries of the WHO European Region.38Table5.HIV diagnoses in people who acquired HIV through injecting drug use,by country and year of diagnosis(20142023)and cumulative totals,in EU/EEA and other countries of the WHO European Region.39Table6.HIV diagnoses in people who acquired HIV through heterosexual contact,by country and year of diagnosis(20142023)and cumulative totals,in EU/EEA and other countries of the WHO European Region.40Table7.HIV diagnoses in people who acquired HIV through mother-to-child transmission,by country and year of diagnosis(20142023)and cumulative totals,in EU/EEA and other countries of the WHO European Region.41Table8.HIV diagnoses in 2023,by country of report,transmission mode and sex,in EU/EEA and other countries of the WHO European Region.42Table9.HIV diagnoses in 2023,by country of report,age and sex,in EU/EEA and other countries of the WHO European Region.44Table10.Origin of those diagnosed with HIV in 2023 by country of report or region,in EU/EEA and other countries of the WHO European Region .46Table11.HIV diagnoses,by geographical area,transmission mode and country or region of origin,in cases reported in 2023.48Table12.Percentage of HIV diagnoses(2023)among individuals over 14 years old,reported with available CD4 cell count data,categorized by CD4 cell count levels(200 and 350 cells per mm of blood)and by transmission mode for cases with CD4 350,in the EU/EEA and other countries within the WHO European Region.51Table13.AIDS diagnoses and rates per 100 000 population,by country and year of diagnosis(20142023)and cumulative totals,in EU/EEA and other countries of the WHO European Region.52Table14.AIDS diagnoses in males and rates per 100 000 male population,by country and year of AIDS diagnosis(20142023)and cumulative totals,in EU/EEA and other countries of the WHO European Region.54Table15.AIDS diagnoses in females and rates per female 100 000 population,by country and year of diagnosis(20132022)and cumulative totals,in EU/EEA and other countries of the WHO European Region.56vHIV/AIDS surveillance in Europe 2024 2023 dataSURVEILLANCE REPORTTable16.The most common AIDS-indicative diseases diagnosed in 2023 ordered by frequency.58Table17.AIDS-related deaths,by country and year of death(20142023)and cumulative totals in EU/EEA and other countries of the WHO European Region.59Table18.Number of HIV tests performed,excluding unlinked anonymous testing and testing of blood donations,by country and year(20142023)and number of tests per 1000 population in 2023,in EU/EEA and other countries of the WHO European Region.60MapsMap 1a.HIV diagnoses per 100 000 population,2023.62Map 1b.HIV diagnoses per 100 000 population,2023,EU/EEA.62Map 2.HIV diagnoses in men per 100 000 male population,2023.63Map 3.HIV diagnoses in women per 100 000 female population,2023.63Map 4.HIV diagnoses in men who have sex with men per 100 000 male population,2023.64Map 5.HIV diagnoses acquired through heterosexual transmission per 100 000 population,2023.64Map 6.HIV diagnoses acquired through injecting drug use per 100 000 population,2023.65Map 7.AIDS diagnoses reported per 100 000 population,2023.65Fig.A1.1.Geographical/epidemiological division of the WHO European Region.68AnnexesAnnex 1.67Annex2.71Annex3.72Annex4a.73Annex4b.74Annex5.75Annex6.77This report was coordinated by Juliana Reyes-Uruea(European Centre for Disease Prevention and Control(ECDC)and Giorgi Kuchukhidze(WHO Regional Office for Europe).WHO Regional Office for Europe and ECDC would like to thank the nominated operational contact points for HIV/AIDS surveillance from European Union/European Economic Area(EU/EEA)Member States and the HIV/AIDS surveillance focal points from the non-EU/EEA Member States and areas of the WHO European Region for providing data and valuable comments on this report:Albania:Marjeta Dervishi;Andorra:Jennifer Fernndez Garcia;Armenia:Anna Mergelyan;Austria:Ziad El-Khatib,Irene Kszoni-Rckerl;Azerbaijan:Gunash Jafarova,Famil Mammadov,Natig Zulfugarov;Belarus:Svetlana Sergeenko;Belgium:Dominique Van Beckhoven,Jessika Deblonde;Bosnia and Herzegovina:Dalibor Pejovi;Bulgaria:Ivailo Alexiev;Croatia:Tatjana Nemeth Blazic;Mirjana Lana Kosanovic Licina;Cyprus:Anna Demetriou,George Siakallis,Fani Theofanous,Elena Xenofontos;Czechia:Marek Mal,Vratislav Nmeek,Hana Zkouck;Denmark:Maria Wessman;Estonia:Kristi Rtel,Jevgenia Epstein;Finland:Henrikki Brummer-Korvenkontio,Kirsi Liitsola;France:Franoise Cazein,Amber Kunkel,Florence Lot;Georgia:Otar Chokoshvili;Germany:Barbara Gunsenheimer-Bartmeyer;Greece:Georgios Ferentinos,Dimitra Paraskeva,Chrysa Tsiara;Hungary:Erika Fogarassy,gnes Galgczi,Zsuzsanna Molnr;Iceland:Anna Margret Gudmundsdottir,Erna Milunka Kojic;Ireland:Mary Archibald,Derval Igoe,Kate ODonnell;Israel:Tali Wagner;Italy:Barbara Suligoi,Maria Elena Tosti;Kazakhstan:Lolita Ganina,Gulnar Temirkhanov;Kyrgyzstan:Aigul Solpueva;Latvia:arlote Konova;Liechtenstein:Esther Walser-Domjan;Lithuania:Giedr Aleksien,Oksana Juien,Vilnel Lipnickien,Jurgita Pakalnikien;Luxembourg:Pierre Braquet,Patrick Hoffmann,Jol Mossong,Yolanda Pires;Malta:Elaine Lautier,Jackie Maistre Melillo,Tanya Melillo;Monaco:Julie Biga;Montenegro:Alma Cicic;Netherlands:Eline Op de Coul,Birgit van Benthem,Ard van Sighem;North Macedonia:Dragan Kocinski;Norway:Robert Whittaker;Poland:Marta Niedwiedzka-Stadnik,Magdalena Rosinska;Portugal:Joana Bettencourt,Vtor Cabral Verssimo,Helena Cortes Martins,Pedro Pinto Leite;Republic of Moldova:Silvia Stratulat;Romania:Mariana Mardarescu;the Russian Federation:Inna Kulikova,Oleg Sonin,Elena Veselova;San Marino:Mauro Fiorini,Andrea Gualtieri;Serbia:Danijela Simic;Slovakia:Alexandra Brainov,Jana Nmen;Slovenia:Irena Klavs,Tanja Kustec;Spain:Asuncion Diaz,Julia Del Amo;Sweden:Maria Axelsson,Anneli Carlander,Lena Dillner,Lilian van Leest;Switzerland:Thibault Lovey;Tajikistan:Zukhra Nurlaminova,Kholnazarov Ramshed;Trkiye:Nurcan Ersz,Ouz Evlice,Burak Tun;Ukraine:Ihor Kuzin,Violetta Martsinovskaya;United Kingdom:Alison Brown,Cuong Chau,Amal Farah;Kosovo1:Luljeta Gashi.Acknowledgementsvi1 All references to Kosovo in this document should be understood to be in the context of the United Nations Security Council resolution 1244(1999).viiHIV/AIDS surveillance in Europe 2024 2023 dataSURVEILLANCE REPORTART antiretroviral treatmentCOVID-19 coronavirus disease ECDC European Centre for Disease Prevention and ControlEU/EEA European Union/European Economic AreaMSM men who have sex with menMTCT mother-to-child transmission PrEP pre-exposure prophylaxisPWID people who inject drugsTESSy The European Surveillance SystemAbbreviationsixHIV/AIDS surveillance in Europe 2024 2023 dataSURVEILLANCE REPORTThis report presents HIV/AIDS surveillance data for 2023,which show significant variation in epidemic patterns and trends across the WHO European Region.In 2023,112 883 HIV diagnoses were reported in 47 of the 53 countries in the Region,including 24 731 from the countries of the European Union/European Economic Area(EU/EEA).This corresponds to a crude rate of 12.7 HIV diagnoses per 100 000 population in the Region overall,a slight(2.4%)increase compared with the 2022 rate(12.4 per 100 000 population)but still a 19.6crease compared to the 2019 rate(15.8 per 100 000 population):the period before the coronavirus disease(COVID-19)pandemic(Table A;Fig.A).In all,21 out of 47 countries reported an increase in HIV diagnoses in 2023 compared to 2022.Several countries1,including Azerbaijan,Finland,Iceland,Ireland,Kazakhstan,Lithuania,Malta and Montenegro,recorded the highest number of HIV diagnoses in a single year over the past decade.For the EU/EEA countries,the rate in 2023 was 5.3 per 100 000,marking a 15.9crease from the 6.3 per 100 000 rate observed in 2014.However,focusing only on newly reported cases and excluding previous positive diagnoses,2 the rate increased by 11.8tween 2022 and 2023(from 3.4 to 3.8 per 100 000 population).1 In this report,the word“countries”refers to“countries,territories and areas”without distinction.2 Previous positive diagnoses are defined as an HIV diagnosis made either abroad or in another setting within the reporting country on any occasion before the current year of reporting.Some countries report previous positive HIV cases as they enter,re-enter or re-engage with the care system in the reporting country.When comparing the number of HIV diagnoses made to the estimated number of new HIV infections acquired over the past decade,it is evident that an increasingly larger number of individuals are acquiring HIV infection than are being diagnosed.This indicates a growing number of people living with undiagnosed HIV in the Region(Fig.A).In the EU/EEA,the trend differs from that of the wider Region with slightly more diagnoses reported than estimated new infections.The increase in HIV diagnoses in 2023 can be attributed to various factors across different subregions.3 In the east of the WHO European Region,countries reported a rebound in HIV testing and case detection since the COVID-19 pandemic subsided,focusing on increasing case detection and introducing new testing policies to close the gap on undiagnosed individuals.In the EU/EEA and the west of the Region,the increase may be a result of increased diagnoses among migrants,particularly from high-prevalence countries,and expanded HIV testing services.In contrast,the number of HIV diagnoses in the centre of the Region decreased in 2023 compared to 2022,mainly due to a reduction in previous positive diagnoses.However,six out of 15 countries in the centre still reported an increase in 2023 compared to 2022.3 Fig.A1.1 in Annex 1 illustrates the division of countries into west,centre and east of the WHO European Region.Overview of HIV and AIDS in Europe TableA.Characteristics of new HIV and AIDS diagnoses reported in the WHO European Region,the west,centre and east of the WHO European Region,and the EU/EEA,2023 WHO European RegionWestCentreEastEU/EEA Reporting countries/number of countriesa47/5320/2314/1513/1530/30Number of new HIV diagnoses 112 88327 0438 23977 60124 731Rate of HIV diagnoses per 100 000 population12.76.24.230.65.3Percentage aged 1524 years5.8%9.0.2%4.0.1%Percentage aged 50 years18.7!.1.6.2 .5%Male-to-female ratio1.82.13.91.62.7Percentage of migrantsb 38.1i.90.5%3.2G.9%Transmission modeSex between men11.73.3.1%3.4F.7%Heterosexual transmission(men)33.1.9.2.5!.2%Heterosexual transmission(women)30.7#.7%8.35.6$.8%Injecting drug use13.6%3.3%2.3.4%4.1%Mother-to-child transmission0.5%1.3%0.4%0.3%0.9%Unknown10.3!.1T.7%1.8.6%AIDS and late HIV diagnosisPercentage new HIV diagnoses CD4 350 cells/mm352.445.957.059.552.7Number of new AIDS diagnosesc 7 878 2 168 874 4 836 2 690Rate of AIDS diagnoses per 100 000 population1.20.60.44.90.7a No data received from Andorra,Bosnia and Herzegovina,Monaco,San Marino,Turkmenistan or Uzbekistan.b Migrants defined as originating from outside of the country in which they were diagnosed.c No data reported by Andorra,Belarus,Bosnia and Herzegovina,Cyprus,Germany,Monaco,North Macedonia,the Russian Federation,San Marino,Sweden,Turkmenistan or Uzbekistan.xSURVEILLANCE REPORTHIV/AIDS surveillance in Europe 2024 2023 dataThe mode of transmission varies across subregions,once again highlighting the diversity in HIV epidemiology within the Region.In the EU/EEA,and the west and centre of the Region,heterosexual transmission has become one of the most prevalent modes of HIV diagnoses reported in 2023,particularly among migrants or those with a previous positive diagnosis.Among people reported with heterosexual transmission in the west,13%had been previously diagnosed,74%were born abroad and 40%originated from countries with a high prevalence of HIV.Sex between men is still,however,the most prevalent mode of transmission in EU/EEA countries,and a predominant transmission mode for seven of the 15 countries in the centre.As in previous years,heterosexual transmission remains the main mode of transmission in the east of the Region.However,although reported transmission through sex between men remains low in absolute terms in the east,it has more than doubled over the past decade:the largest increase in any transmission mode and subregion of the Region.The proportion of injecting drug use as a reported mode of transmission continues to decline and reached a record low rate of 18.4%in the east.Late HIV diagnosis remains a challenge for most countries in the Region:more than half(52.4%)of those diagnosed in 2023 were diagnosed late(CD4 cell count 350 cells per mm3).The percentage of people diagnosed late varied across transmission modes and age groups,with the highest rates among people infected through heterosexual contact(especially men),injecting drug use and people in older age groups(Fig.B).Fig.A.Estimated new HIV infections and reported new HIV diagnoses in the EU/EEA and WHO European Region,20142023 Note:the shaded area represents uncertainty intervals around the best estimate.Data from Andorra,Bosnia and Herzegovina,Monaco,San Marino,Turkmenistan and Uzbekistan were excluded due to inconsistent reporting or unavailability of estimates during the period.050 000100 000150 000200 0002023202220212020201920182017201620152014Number of reported HIV diagnoses and estimated new HIV infectionsYear of diagnosis EU/EEA estimated infectionsEU/EEA diagnosesWHO European Region diagnoses WHO European Region estimated infectionsFig.B.Proportion of people diagnosed late(CD4 cell count 350 per mm3)by gender,age and transmission mode,WHO European Region,2023 010203040506070Sex between menInjecting drug useHeterosexual transmission(transgender)Heterosexual transmission(women)Heterosexual transmission(men)50 40493039252920241519TransgenderWomenMenTotalPercentageGenderAge group(years)TransmissionmodeNote:CD4 data from the Russian Federation was excluded as this was not provided with age,sex and transmission route breakdowns.xiHIV/AIDS surveillance in Europe 2024 2023 dataSURVEILLANCE REPORTIn 2023,7878 people were diagnosed with AIDS,reported in 41 countries of the WHO European Region(Table A).The overall rate of AIDS diagnoses in the Region decreased by 50tween 2014 and 2023:from 2.4 per 100 000 population(17 363 cases)to 1.2 per 100 000.This declining trend is evident across all the subregions of the Region,including the EU/EEA.EU/EEA In 2023,a total of 24 731 HIV diagnoses were reported across 30 EU/EEA countries,resulting in a rate of 5.3 per 100 000 population.Since 2014,this rate has decreased by 15.9%,down from 6.3 per 100 000.Previously positive diagnoses accounted for 16.3%(4020)of all cases reported in 2023.When focusing only on new HIV diagnoses excluding previously positive cases to capture only newly reported ones the 2023 rate was 3.8 per 100 000,reflecting an 11.8%increase from the 2022 rate of 3.4 per 100 000.As in previous years,more men than women were diagnosed with HIV in 2023,with 17 793 cases among men and 6688 cases among women,resulting in an overall male-to-female ratio of 2.7.The overall rate was 8.0 per 100 000 population for men and 2.9 per 100 000 population for women.In addition,seven countries reported 0.8%(206)of all diagnoses in people identifying as transgender,while 0.2%(44)of diagnoses were reported with an unknown gender.Sex between men was the most reported mode of transmission in the EU/EEA in 2023,accounting for 33.8%(8367)of all reported diagnoses and 46.7%of cases where the mode of transmission was known.Between 2014 and 2023,the proportion of HIV diagnoses attributed to sex between men declined from 52.1%to 46.9%of all diagnoses.Among those diagnosed in 2023,51.5%(4306)of men who have sex with men(MSM)were born in the reporting country,while 44.4%(3712)were migrants.The number of HIV diagnoses among migrant MSM increased by 37.7%,from 2659 in 2014 to 3661 in 2023.Heterosexual contact remains one of the most common modes of HIV transmission in the EU/EEA,accounting for 33.4%(8254)of all HIV diagnoses and 46.1%of diagnoses with a known mode of transmission.Of these diagnoses,33.7%(2779)were among people born in the reporting country,while most(62.4%;5153)were among migrants.Between 2014 and 2023,the proportion of HIV diagnoses due to heterosexual transmission rose from 41.4%to 46.2%.This increase was moderate among men(rising from 20.6%to 21.3%),but higher among women,rising from 20.7%to 24.9%.Between 2022 and 2023,diagnoses among heterosexual migrants rose by 2.1%,while the increase among those born in the reporting country was 4.5%.Transmission due to injecting drug use accounted for 4.1%(1012)of all HIV diagnoses in 2023 and 5.7%of diagnoses with a known mode of transmission in 2023.Nearly half(47.6%)of the people who inject drugs reported with an HIV diagnosis in 2023 were migrants.Mother-to-child transmission(MTCT)during pregnancy,childbirth or breastfeeding accounted for 0.9%(217)of all reported HIV diagnoses and 1.2%of cases with a known mode of transmission.Of the total cases attributed to MTCT,78.8%(171 cases)were among migrants,with 41.5%originating from Sub-Saharan Africa.In 2023,migrants(defined as people born outside the reporting country)comprised 47.9%of all HIV diagnoses in the EU/EEA.Among the migrant population,31.6%were from Sub-Saharan Africa,30.1%from central and eastern Europe,22.8%from Latin America and the Caribbean,5.1%from western Europe,5.1%from south and south-east Asia,and 5.3%from other regions.When excluding cases with an unknown region of origin,the proportion of migrants among all reported HIV diagnoses in EU/EEA countries rose from 47.3%in 2014 to 55.8%in 2023,reflecting a 17.9%increase over this period.This trend was marked by a 32.5crease in cases from central and eastern Europe and a 20.4%increase in cases from Sub-Saharan Africa over the past year.CD4 cell count data at the time of HIV diagnosis were available for 59.8ults and adolescents(14 795)diagnosed across 27 countries.For the calculation of late diagnoses,children under 15 years,acute cases,and previously positive diagnoses were excluded,resulting in 11 961 people with recorded CD4 counts.Among these,over half(52.7%)were considered to have been diagnosed several years post-infection,indicated by a CD4 cell count 350 cells per mm.This included 31.6%of people with advanced HIV infection(CD4 cell count 200 cells per mm).Late diagnosis(CD4 cell count 350 cells per mm)was most frequently observed among women(58.2%),older adults(up to 68.5%),people infected through heterosexual contact(63.8%of men and 58.2%of women),people who inject drugs(52.7%),and people from south and south-east Asia(61.1%)and Sub-Saharan Africa(58.6%).This year marked a significant step forward in terms of transgender people reporting within HIV surveillance,with information from transgender people now included in the epidemiological profile of reported HIV diagnoses.In 2023,206 transgender people(0.8%of all diagnoses)were reported as diagnosed with HIV across seven EU/EEA countries.Of these,86.4%were migrants,primarily from Latin America and the Caribbean.Among those with CD4 count data available,27.1%were diagnosed during the acute stage of infection,while 29.2%were diagnosed at a late stage(CD4 cell count 15.0)were observed in the Russian Federation(37.9)followed by Ukraine(31.7),the Republic of Moldova(27.0),Malta(21.0),Kazakhstan(20.6),Armenia(18.0),Cyprus(17.6),Ireland(17.3),Georgia(16.4),Kyrgyzstan(15.6)and Belarus(15.4).The lowest rates(3.0 and under)were reported by Sweden(2.9),Slovakia(2.6),Croatia(2.5),Hungary(2.4),North Macedonia(2.4),Serbia(2.2),Austria(2.1)and Slovenia(2.1).The overall rate for men was 16.7 per 100 000 population and for women,8.9 per 100 000 population;The male-to-female ratio was 1.8,lowest in the east(1.6),higher in the west(2.1),and highest in the centre(3.9)of the Region.The largest proportion of people diagnosed in the Region were in the age group 3039(36%),while 6%were young people aged 1524,and 19%were 50 years or older at diagnosis.The most common reported mode of transmission was heterosexual contact(63.8%),while 13.6%were infected through injecting drug use,11.7%through sex between men,and less than one percent through MTCT.Information on transmission mode was unknown or missing for 10.3%of the new diagnoses.Among the HIV diagnoses reported by 13 countries in the east for whom the mode of HIV transmission was known,76.1%were infected through heterosexual transmission and 18.4%through injecting drug use,while reported transmission through sex between men remained low,at 3.4%of cases.Heterosexual sex(24.5%)and sex between men(18.1%)were the main reported transmission modes in the centre among cases with known modes of transmission,but 54.7%of HIV diagnoses lacked information on the mode of transmission.Sex between men was the predominant transmission mode for seven of the 15 countries in the centre.In the west,heterosexual transmission emerged as the main mode(40.1%);however,of these cases,13%were previously diagnosed,74%were born abroad,and 40%originated from generalized epidemic countries.The second most common transmission mode was sex between men(33.3%of cases).Information on the mode of transmission was missing for 21.1%of people diagnosed with HIV in 2023.Consistent data on transmission mode were available from 39 countries for the period 20142023.Transmission in the east was driven by the number of HIV diagnoses with reported heterosexual transmission.Transmission through sex between men increased by almost 120%.Although the number of HIV diagnoses in people infected through injecting drug use decreased by 39%over the period,injecting drug use still accounted for 18.4%of all HIV diagnoses.Despite the increasing trend in heterosexual transmission,seven of the 15 countries in the centre reported sex between men as the predominant mode of transmission.In the west,overall HIV diagnosis rates have shown a decline over the past decade.This decline is primarily due to a decrease in the number of diagnoses among MSM in some countries.However,even if previously diagnosed cases are excluded,there has been an increase in diagnoses in the past year among people infected through heterosexual contact,particularly among women and migrants.Among those newly diagnosed and over 14 years old for whom information on CD4 cell count at the time of HIV diagnosis was available,more than half(52.4%)were diagnosed late,with CD4 cell count 350 cells per mm3,including 31.6%with advanced HIV infection(CD4 cell count 200 cells per mm3).However,the regional average does not include data from the Russian Federation,4 where 30.0%of those diagnosed with HIV are detected once their CD4 cell counts have fallen below 350 cells per mm3 and 15.1%once their counts are below 200 cells per mm3.Late HIV diagnosis remains a challenge in most of the countries of the Region.The percentage of people who were diagnosed late(CD4 cell count 350 per mm3)varied across transmission categories and age groups,but was highest for people with reported heterosexual transmission(56%;61%for men and 51%for women)and people who inject drugs(52.0%),and lowest for MSM(43.0%)(Fig.B).The percentage increased with age,ranging from 37.7%among people aged 1519 years at diagnosis,to 65.9%among those aged 50 years or above.In terms of gender,the percentage of late diagnoses was 53.4%for men and 50.6%for women:4 Data on CD4 cell count reported from the Russian Federation did not include disaggregation by previous positive status and mode of transmission and were,therefore,excluded from the subregional and regional analysis.xiiiHIV/AIDS surveillance in Europe 2024 2023 dataSURVEILLANCE REPORTthe lower rate for men compared to women is due to a further decrease in late diagnoses among MSM.In 2023,7878 people in 41 countries of the WHO European Region were diagnosed with AIDS,corresponding to a rate of 1.2 per 100 000 population.Overall,61%of AIDS cases were diagnosed in the east where the rate per 100 000 was also highest(4.9)28%in the west(with a rate of 0.6 per 100 000)and 12%in the centre of the Region(0.4 per 100 000).Twelve percent of those diagnosed with AIDS presented with tuberculosis as an AIDS-defining illness,ranging from 11%of reports in the west to 12%in the centre and 14%in the east.Between 2014 and 2023,the overall rate of new AIDS diagnoses in the Region decreased by 50%.ConclusionsHIV infection continues to affect the health and well-being of millions of people in the WHO European Region.Over the course of the last four decades,nearly 2.6 million people have been diagnosed and reported with HIV in the WHO European Region,including over 650 000 people in the EU/EEA.The overall trend in HIV diagnoses largely reflects the situation in the Russian Federation,where diagnoses have decreased since 2019 by 32%.In total,however,21 of 47 countries reported an increase in HIV diagnoses in 2023 compared to 2022,and several countries recorded the highest number of HIV diagnoses reported in a single year in the last decade.The increase in HIV diagnoses in 2023 in these countries can be attributed to a range of factors.In the east,four countries reported an increased number of HIV diagnoses in 2023 compared to 2022.This is mainly due to a rebound in HIV testing since the pandemic subsided,focusing on increasing case detection and introducing new testing policies to close the gap on undiagnosed people.Eleven countries in the west reported an increased number of HIV diagnoses,and it is the only subregion where HIV diagnoses overall increased in 2023 compared to 2022.This is mainly due to an increase in the proportion of HIV diagnoses among people originating from outside the reporting country:from 60.3%in 2022 to 66.1%in 2023.This figure is significantly higher than in the centre(19.4%)and the east(2.0%).This increase is primarily due to a rise in the number of people diagnosed with HIV originating from Sub-Saharan Africa and continued high rates among people originating from central and eastern Europe,Latin America and the Caribbean.Notably,12.9%of the diagnoses reported in the west in 2023 were previously positive diagnoses.However,the number of previous positive diagnoses is probably underestimated,as the variable identifying these cases had a completeness of 48.6%in 2023.Therefore,it is important to understand the differences in the epidemiological profile of previously diagnosed and newly diagnosed people,as well as the origin of cases,to adequately manage prevention,public health and resource planning(1).In contrast,the number of HIV diagnoses in the centre decreased in 2023 compared to 2022,mainly due to a reduction in previous positive diagnoses in large EU/EEA countries.However,six out of 15 countries in the centre still reported an increase in 2023 compared to 2022.Across the 30 EU/EEA countries,there was a 15.9crease in HIV diagnoses from 2014 to 2023,indicating a gradual decline in overall cases.However,when previously diagnosed cases are excluded,the rate of new HIV diagnoses in 2023 shows an increase from 2022.Epidemiological profiles of new and previous positive diagnoses differ in EU/EEA countries.Newly diagnosed HIV cases in EU/EEA countries are mostly seen in middle-aged men,but women now make up 28%of all cases.A significant portion of new diagnoses(47.9%)are among migrants,although 38%of newly diagnosed people were born in the reporting country.Sexual transmission between men remains a leading mode of transmission in the EU/EEA,but heterosexual transmission also accounts for a substantial number of new diagnoses.In contrast,previous positive diagnoses show a higher proportion of women,older individuals and people mainly from central and eastern Europe,Sub-Saharan Africa,Latin America and the Caribbean,with heterosexual transmission being the most common mode of transmission for those individuals.Although the reported transmission through sex between men remains low in absolute terms in the east,it has increased more than two-fold during the decade the largest increase in any transmission category and any subregion of the Region.Heterosexual transmission remains a main transmission route in the east.However,there is some evidence to suggest that a proportion of men reported as heterosexually infected may,in fact,be MSM or people with a history of drug injection,which may have been misclassified as heterosexually infected(24).The proportion of people infected through heterosexual transmission originating outside the reporting countries of the centre has increased in recent years,from 13%in 2021 to 23%in 2023.Forty percent and above of cases infected through heterosexual transmission from Croatia,Montenegro,Poland and Slovenia,and 70%and above from Cyprus,Czechia and Slovakia were reported among migrants.Despite the increasing trend in heterosexual transmission,seven of the fifteen countries in the centre reported sex between men as the predominant mode of transmission.In the European Region,more than half of HIV diagnoses have a CD4 cell count 350 cells per mm3,including almost a third of cases with advanced HIV infection(CD4 cell count 200 per mm3)at the time of diagnosis.xivSURVEILLANCE REPORTHIV/AIDS surveillance in Europe 2024 2023 dataAs in previous years,data from 2023 indicate that late HIV diagnosis is highest among people infected heterosexually(particularly men),among those infected as a result of injecting drug use,and among those in older age groups.Data from this report also indicate that the gap between HIV diagnoses and infections is widening in the Region,indicating that it will not reach the 2025 target of 95%of those living with HIV diagnosed.Interventions to control the epidemic should be based on evidence and adapted to national and local epidemiology.This report provides an extensive overview of the epidemiology of HIV,indicating that the following response efforts should be prioritized:In all countries in the Region:rapid scale-up of HIV testing is of the utmost importance to improve progress towards the 95%target by 2025.WHO has issued a policy brief on moving away from the use of western blotting and line immunoassays in HIV testing strategies and algorithms and towards the support of decentralized testing and rapid linkage to treatment(5).Guidance from WHO and the European Centre for Disease Prevention and Control(ECDC)recommends innovative approaches,including self-testing and community testing by lay providers using rapid tests as part of overall HIV testing services,including easily accessible services for migrant populations(68).While the provision of HIV testing services has improved over time,and self-testing and community-based HIV testing have increased substantially in recent years,policy monitoring in the Region indicates that some testing modes remain limited or non-existent in many European countries(9).HIV testing services and strategies should be based on available data describing the local epidemiology,identifying key populations to target.These strategies should be tailored to meet the specific needs of these populations,supporting timely linkage to HIV prevention,treatment and care.This will ensure earlier diagnoses and treatment initiation,resulting in improved treatment outcomes and reduced HIV incidence,morbidity and mortality in support of the 959595 goals and other regional and global targets(1012).A robust body of evidence shows that early initiation of antiretroviral treatment(ART)is beneficial to the health of the person receiving the treatment and in preventing onward HIV transmission(1318).Nearly 90%of countries in the WHO European Region have a policy to initiate ART upon HIV diagnosis,irrespective of CD4 cell count(19).In the EU/EEA and countries in the west of the Region:the rise in new HIV diagnoses may be linked to increased HIV diagnoses in migrants and expanded testing services,reflecting shifts in demographics and improvements in detection and reporting across the EU/EEA and the west of the Region.To strengthen HIV prevention among migrant populations,countries should expand primary prevention services such as condom distribution,sexual education for youth and pre-exposure prophylaxis(PrEP)to ensure accessibility for migrants.Providing testing and treatment irrespective of residency or migration status supports effective prevention and care.Addressing broader barriers to HIV care and improving guidance on health-care access is also essential.Over the past decade,sexual contact between men has been the primary transmission mode in the EU/EEA and the west of the Region.Prevention efforts for MSM should include comprehensive programmes that expand PrEP access,remove eligibility barriers and broaden PrEP availability across diverse settings.Integrating PrEP with regular testing and timely linkage to care can reduce HIV incidence among MSM(2021).For effective monitoring,robust surveillance systems are essential.Community-based,culturally tailored interventions,self-testing kits and targeted social marketing can further enhance testing access for migrant MSM.Heterosexual transmission is increasing in the west,becoming a significant mode of transmission,with a notable prevalence of late diagnoses among heterosexual people.Expanding targeted testing including indicator condition-guided testing,emergency department testing and raising awareness among health-care workers to carry out risk-based targeted screening can all improve early HIV detection in this population.In countries in the centre of the Region:following an unprecedentedly high number of HIV diagnoses recorded in 2022,the number of HIV diagnoses at the centre decreased in 2023,mainly due to a reduction in the number of previous positive diagnoses in large EU/EEA countries.However,six out of 15 countries in the centre still reported an increase in 2023 compared to 2022.Despite the increasing trend in heterosexual transmission due to the factors described earlier,seven of the 15 countries in the centre reported sex between men as the predominant mode of transmission.Interventions to address this situation are needed,such as condom and lubricant programming;diversified HIV testing services;assisted voluntary partner notification,PrEP;prevention and management of co-infections(particularly sexually transmitted infections);and rapid HIV treatment initiation.Services should be patient-centred and provided in a friendly environment,preferably with the involvement of civil society throughout the entire HIV continuum of services,ranging from HIV prevention to adherence to ART.Drug-injection-related transmission remains low,but past outbreaks(2226)suggest that HIV prevention services for people who inject drugs continue to be important and these must be maintained with sufficient coverage to prevent such outbreaks.The percentage of young people among HIV diagnoses is also higher in this part of the Region than elsewhere.Some countries have undergone a transition to domestic financing of the HIV response after the withdrawal of funding from the Global Fund to Fight AIDS,Tuberculosis and Malaria.This has xvHIV/AIDS surveillance in Europe 2024 2023 dataSURVEILLANCE REPORTposed sustainability challenges,particularly regarding the financing of HIV prevention programmes and surveys among key populations designed and delivered by communities.In addition,ensuring access to health services for refugees and migrant populations,including HIV services,and promoting cross-border collaboration and data sharing,remains essential to a robust and people-centred public health response,especially in countries heavily affected by the influx of these populations.Increased political will and attention and the intensified involvement of civil society are needed to mitigate some of these challenges and prevent the epidemic from accelerating(27).In countries in the east of the Region:several countries in the east of the Region also recorded the highest number of HIV diagnoses reported in a single year.While these countries have reported a rebound in HIV testing and case detection since the pandemic subsided due to the introduction of new testing policies to increase case detection,this is still not enough to close the gap to ensure that people know their HIV status,and more people need to be diagnosed.For the countries in the east,there is an urgent need to continue the scale-up of bold,evidence-based interventions and deliver more effective,integrated services through health systems that better address the social determinants of health.Comprehensive combination-prevention and innovative HIV testing strategies are needed,with a particular focus on reaching key populations.This can be achieved through user-friendly prevention and testing services,including assisted partner notification,PrEP,HIV testing performed by trained lay providers and self-testing in line with WHO recommendations.All of these services should be integrated into national policies and programmes and then implemented(6,7,12).Community involvement in the design and delivery of services is essential for reducing the rate of HIV infections and increasing the number of people linked to care and initiated and retained on ART.The ultimate aim is to reduce HIV incidence and AIDS-related deaths.Innovative HIV prevention interventions should address the risk of heterosexual transmission,particularly in couples where one partner engages in high-risk behaviour(such as injecting drug use)or is spending longer periods of time working abroad.A substantial number of diagnoses in people infected through injecting drug use emphasizes the fact that evidence-based policies focused on key populations,including high coverage of harm-reduction programmes for people who inject drugs,remain critical to the HIV response in the eastern part of the Region.The HIV data for 2023 revealed significant issues with data quality;completeness and lack of standardization for the variable;differentiating new HIV diagnoses from previous positives;as well as variables looking at the country of birth and region of origin of cases.This,in combination with the increase in migration made 2022 and 2023 data interpretation very challenging.Achieving consensus among countries in the Region on the collection,recording and reporting of previous positive cases is paramount.This is critical due to the different epidemiological profiles and health-care needs of refugees,migrants and previously diagnosed individuals.Improving data recording and reporting standards within surveillance systems for previous positive cases will ensure accuracy and help plan tailored prevention strategies.Due to limited data availability among the transgender population,a more comprehensive understanding of their epidemiological profile remains elusive.Conducting enhanced HIV surveillance increases the possibility for longer-term monitoring of HIV continuum-of-care outcomes,such as modelling the undiagnosed fraction,and measurement of linkage to care,treatment and viral suppression following diagnosis.It can also support national and global efforts to monitor progress towards the 959595 goals and other global and regional targets.WHO and ECDC are working with Member States to operationalize the Regional action plans for ending AIDS and the epidemics of viral hepatitis and sexually transmitted infections 20222030(12)and to measure progress toward the Sustainable Development Goal target 3.3 on ending AIDS by 2030.Key efforts from both WHO and ECDC focus on supporting countries to increase the uptake of HIV testing and treatment guidance and innovative combination HIV prevention approaches in key populations.WHO and ECDC are also working to eliminate MTCT of HIV,viral hepatitis B and syphilis and to strengthen HIV surveillance and reporting and other key priorities,as highlighted in the action plans(12).WHO and ECDC,together with partners,will continue to support Member States in their efforts to accelerate progress towards achieving the Sustainable Development Goals for HIV through dedicated guidance,workshops,training,webinars and other technical support focused on high-impact surveillance,monitoring,treatment and prevention activities.References51.Massmann 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cross-sectional analysis.Lancet HIV.2019;6(5):e31524(https:/doi.org/10.1016/S2352-3018(19)30036-0).26.Des Jarlais DC,Sypsa V,Feelemyer J,Abagiu AO,Arendt V,Broz D,et al.HIV outbreaks among people who inject drugs in Europe,North America,and Israel.Lancet HIV.2020;7(6):e43442(https:/doi.org/10.1016/S2352-3018(20)30082-5).27.Lost in transition.Three case studies of Global Fund withdrawal in south-eastern Europe.New York:Open Society Foundations;2017(www.opensocietyfoundations.org/publications/lost-transition).xviiHIV/AIDS surveillance in Europe 2024 2023 dataSURVEILLANCE REPORT -/-/2023.,.2023.47 53 112 883 -,24 731 /(/):,12,7 -100 000 ,(2,4%),2022.(12,4 100 000).,2023.19,6 19.(15,8 100 000),.,(COVID-19)(A;.A).21 47,2023.-2022.,-,./-2023.5,3 100 000,15,9 14.,6,3 100 000.,2023,2022.,-,-11,8%(c 3,4 3,8 100 000).1 -,-,1 -,-,.-,.A.-,/,2023./-,/-a47/5320/2314/1513/1530/30 -112 88327 0438 23977 60124 731 -100 000 12,76,24,230,65,3(%)1524 5,8%9,0,2%4,0,1%(%)50 18,7!,1,6,2 ,5%1,82,13,91,62,7(%)b 38,1i,90,5%3,2G,9,73,3,1%3,4F,7%()33,1,9,2,5!,2%(30,7#,7%8,35,6$,8,6%3,3%2,3,4%4,1%0,5%1,3%0,4%0,3%0,9,3!,1T,7%1,8,6%-(%)-CD4 350/3 c52,445,957,059,552,7 d 7 878 2 168 874 4 836 2 690 100 000 1,20,60,44,90,7a :,-,b ,-,.c :,-,.,.,-(.)./:-.-2023.2 COVID-19 -,-./-,-,-.:-2023.2022.,-.,6 15 ,2023.-2022.-,-.2023./-;-.,13%-,74%,40%-.,/7 15 .,.-,.18,4%.-:2023.(CD4 350/3).A.-/,20142023.:.:,-,.050 000100 000150 000200 0002023202220212020201920182017201620152014 -/-/-xviiixixHIV/AIDS surveillance in Europe 2024 2023 dataSURVEILLANCE REPORT (52,4%)-.2 ,(),(.).2023.41 7 878 ().2014.2023.2 50%,2,4 100 000 (17 363)1,2 100 000.,/./2023.30 /24 371 -:,5,3 100 000.2014.15,9%(6,3 100 000).-,2023.,16,3%(4 020).B.(%)(CD4 350/3),2023.010203040506070 ()()()50 40493039252920241519 :,.,.2 .A1.1 1 ,.-2023.3,8 100 000,11,8 22.(3,4 100 000).,-2023.(17 793)(6 688),2,7.8,0 100 000 2,9 100 000 .,0,8%(206),0,2%(44).2023./-:33,8%(8367),46,7%.2014.2023.-,52,1F,9%.2023.-,()51,5%(4 306),44,4%(3 712).-37,7%,2 659 2014.3 661 2023./-:xxSURVEILLANCE REPORTHIV/AIDS surveillance in Europe 2024 2023 data33,4%(8 254)-46,1%.33,7%(2 779),62,4%(5 153),.2014.2023.-,41,4F,2%.(20,6!,3%),20,7$,9%.2023.,2022.,-2,1%,4,5%.2023.4,1%(1 012)-5,7%.(47,6%)-2023.-(),0,9%(217)-1,2%.78,8%(171),41,5%.2023./(,)47,9%-,31,6%,30,1%,22,8%,5,1%,5,1%-,5,3%.-/,47,3 14.55,8 23.,17,9%.32,5%,20,4%,.CD4-59,8%(14 795)27.15,-,CD4-11 961.(52,7%)-,CD4-350/3.31,6%-(CD4-200/3).(CD4-350/3)(58,2%),(68,5%),(63,8X,2%),(52,7%),-(61,1%)(58,6%).2023.-:-.2023./206 -(0,8%).86,4%,.,CD4-,27,1%,29,2%(CD4-15,0)(37,9),(31,7),(27,0),(21,0),(20,6),(18,0),(17,6),(17,3),(16,4),(15,6)(15,4).(3,0)(2,9),(2,6),(2,5),(2,4),(2,4),(2,2),(2,1)(2,1).16,7 100 000,8,9 100 000.1,8;(1,6),(2,1),(3,9).-(36%)30-39,6-24 19P .,-(63,8%),(13,6%),(11,7%)1%.10,3%.,13,-76,1%,18,4%,3,4%.(24,5%)(18,1%),54,7%-.7 15 .-(40,1%);,13%-,74%,40%.(33,3%).21,1%-,2023.20142023.-39 .120%.-,39%,18,4%-.,7 15 .-,.,-,.14,-CD4-,(52,4%),CD4-350/3,31,6%-(CD4-200/3).,3 30,0%-,CD4-350/3 15,14-200/3.-.(CD4-350/3),(56%;61Q%),(52,0%),(43,0%)(.B).37,719 65,9P .53,4%3 CD4-.xxiiSURVEILLANCE REPORTHIV/AIDS surveillance in Europe 2024 2023 data 50,6%:.2023.7 878 41 ,1,2 100 000.,61%,100 000 (4,9),28%(0,6 100 000)12%(0,4 100 000).12%,-(11%,12%).2014.2023.50%.-.-2,6 ,650 000 /.-,2019.32%.,21 47 -2023.2022.,-,.-2023.-2023.2022.-COVID-19,-.-;,-2023.2023.-,60,3 22.66,1 23.,(19,4%)(2,0).,-,.,12,9%,2023.,-.,-,2023.48,6%.,-,(1).:-2023.2022.,-.,6 15 ,2023.-2022.30 /20142023.-15,9%,.,2023.,2022.,-.-/.-/,28%.-(47,9%),38%,./-,.:xxiiiHIV/AIDS surveillance in Europe 2024 2023 dataSURVEILLANCE REPORT ,;.-,.-.,(2-4).,13 21.23 23.,40%,70%.,7 15 -.-CD4-350/3,(CD4-200/3 ).,2023.,-,(),.,-,2025.,95%,-.-,:-2025.95%,.,-(5).,(68).,-(9).-.,-.,-95-95-95 (1012).,(),-(1318).90%,CD4-(19)./:-,-/.-,xxivSURVEILLANCE REPORTHIV/AIDS surveillance in Europe 2024 2023 data (),.,.-/.-(20-21).,.:,.,-.:,2022.-,2023.,-/.,2023.6 15 2022.,7 15 .,-,-,()-.,-,-.-,(2226),-,.,-,-.,-.-.,(,-).,(27).:-,.,-COVID-19 ,-:.xxvHIV/AIDS surveillance in Europe 2024 2023 dataSURVEILLANCE REPORT ,.-,.,-,-,.,(6,7,12).-,.-,.-,(,).-,-.-2023.,-,.,2022.2023.,-,-.-.-,.959595 .-,2022-2030.(12),3.3,2030.-.,-,-,.-,-,.xxviSURVEILLANCE REPORTHIV/AIDS surveillance in Europe 2021 2020 data41.Massmann R,Groh T,Jilich D,Bartkov D,Bartovsk Z,Chmela J,et al.HIV-positive Ukrainian refugees in the Czech Republic.AIDS.2023 Oct 1;37(12):1811-1818(https:/doi.org/10.1097/QAD.0000000000003633).2.Dumchev K,Kornilova M,Kulchynska R,Azarskova M,Vitek C.Improved ascertainment of modes of HIV transmission in Ukraine indicates importance of drug injecting and homosexual risk.BMC Public Health 2020;20(1):1288(https:/doi.org/10.1186/s12889-020-09373-2).3.akalo JI,Boievi I,Vitek C,Mandel JS,Salyuk T,Rutherford GW.Misclassification of men with reported HIV infection in Ukraine.AIDS Behav.2015;19(10):193840(https:/doi.org/10.1007/s10461-015-1112-0).4.Dumchev K,Stepanovich-Falke A,Lunchenkov N,Rohde A,Danshyna A,Bekbolotov A,et al.Comparison of Registered and Survey-based Modes of HIV Transmission in 2021-2023:cross-sectional study in the Kyrgyz Republic.2024;PREPRINT(Version 1)(https:/doi.org/10.21203/rs.3.rs-4592674/v1).5.WHO recommends countries move away from the use of western blotting and line immunoassays in HIV testing strategies and algorithms:policy brief.Geneva:World Health Organization;2019(WHO/CDS/HIV/19.30;https:/iris.who.int/handle/10665/329915).License:CC BY-NC-SA 3.0 IGO.6.Guidelines on HIV self-testing and partner notification:supplement to consolidated guidelines on HIV testing services.Copenhagen:World Health Organization;2016(https:/iris.who.int/handle/10665/251655).7.,2019.:;2020 https:/iris.who.int/bitstream/handle/10665/329966/WHO-CDS-HIV-19.31-rus.pdf).:CC BY-NC-SA 3.0 IGO8.Public health guidance on HIV,hepatitis B and C testing in the EU/EEA.Stockholm:ECDC;2018(www.ecdc.europa.eu/en/publications-data/public-health-guidance-hiv-hepatitis-b-and-c-testing-eueea).9.HIV testing.Monitoring implementation of the Dublin Declaration on Partnership to fight HIV/AIDS in Europe and Central Asia:2017 progress report.Stockholm:ECDC;2017(https:/ecdc.europa.eu/sites/portal/files/documents/HIV testing.pdf).10.,20222030.:;2022(https:/iris.who.int/bitstream/handle/10665/361970/9789240053878-rus.pdf).:CC BY-NC-SA 3.0 IGO.11.2021-2026.:;2021(https:/www.unaids.org/sites/default/files/media_asset/global-AIDS-strategy-2021-2026_ru.pdf).12.,20222030.(2023).https:/iris.who.int/bitstream/handle/10665/372674/9789289060264-rus.pdf.:CC BY-NC-SA 3.0 IGO.13.-:,.:-;2016(https:/iris.who.int/bitstream/handle/10665/112474/9789244505724_rus.pdf?sequence=1&isAllowed=y).14.-.:;2015 4 18 2024.(https:/iris.who.int/bitstream/handle/10665/343785/9789289051415-rus.pdf?sequence=3&isAllowed=y).15.INSIGHT START Study Group,Lundgren JD,Babiker AG,Gordin F,Emery S,Grund B,et al.Initiation of Antiretroviral Therapy in Early Asymptomatic HIV Infection.N Engl J Med.2015;373(9):795807(https:/doi.org/10.1056/NEJMoa1506816).16.Cohen MS,Chen YQ,McCauley M,Gamble T,Hosseinipour MC,Kumarasamy N,et al.Prevention of HIV-1 infection with early antiretroviral therapy.N Engl J Med.2011;365(6):493505(https:/doi.org/10.1056/NEJMoa1105243).17.EACS Guidelines website.European AIDS Clinical Society;2024(https:/www.eacsociety.org/guidelines/eacs-guidelines/).18.Rodger A,Cambiano V,Bruun T,Vernazza P,Collins S,Degan O et al.Risk of HIV transmission through condomless sex in serodifferent gay couples with HIV-positive partner taking suppressive antiretroviral therapy(PARTNER):final results of a multicentre,prospective,observational study.Lancet.2019;393(10189):242838(https:/doi.org/10.1016/S0140-6736(19)30418-0).19.Continuum of HIV care-Monitoring implementation of the Dublin Declaration on partnership to fight HIV/AIDS in Europe and Central Asia:2021 progress report.Stockholm:ECDC;2022(https:/www.ecdc.europa.eu/en/publications-data/continuum-hiv-care-monitoring-implementation-dublin-declaration-partnership-fight).20.HIV Transmission Elimination Amsterdam(H-TEAM)Initiative,Van Sighem A,Hendriks S,Deug F,Zantkuijl P,van Bergen JE,et al.A 95cline in estimated newly acquired HIV infections,Amsterdam,2010 to 2022.Euro Surveillance.2023;28(40):2300515(https:/doi.org/10.2807/1560-7917.ES.2023.28.40.2300515).21.Cambiano V,Miners A,Lampe FC,McCormack S,Gill ON,Hart G,et al.The effect of combination prevention strategies on HIV incidence among gay and bisexual men who have sex with men in the UK:a model-based analysis.Lancet HIV.2023;10(11):e71322(https:/doi.org/10.1016/S2352-3018(23)00204-7).22.Hedrich D,Kalamara E,Sfetcu O,Pharris A,Noor A,Wiessing L et al.Human immunodeficiency virus among people who inject drugs:is risk increasing in Europe?Euro Surveill.2013;18(48)(https:/doi.org/10.2807/1560-7917.ES2013.18.48.20648).23.Giese C,Igoe D,Gibbons Z,Hurley C,Stokes S,McNamara S et al.Injection of new psychoactive substance snow blow associated with recently acquired HIV infections among homeless people who inject drugs in Dublin,Ireland,2016.Euro Surveill.2016;20(40)(https:/doi.org/10.2807/1560-7917).24.HIV in people who inject drugs joint technical mission to Luxembourg.Stockholm:ECDC/European Monitoring Centre for Drugs and Drug Addiction;2018(https:/sante.public.lu/fr/publications/h/hiv-joint-technical-mission.html).25.McAuley A,Palmateer NE,Goldberg DJ,Trayner KMA,Shepherd SJ,Gunson RN,et al.Re-emergence of HIV related to injecting drug use despite a comprehensive harm reduction environment:a cross-sectional analysis.Lancet HIV.2019;6(5):e31524(https:/doi.org/10.1016/S2352-3018(19)30036-0).26.Des Jarlais DC,Sypsa V,Feelemyer J,Abagiu AO,Arendt V,Broz D,et al.HIV outbreaks among people who inject drugs in Europe,North America,and Israel.Lancet HIV.2020;7(6):e43442(https:/doi.org/10.1016/S2352-3018(20)30082-5).27.Lost in transition.Three case studies of Global Fund withdrawal in south-eastern Europe.New York:Open Society Foundations;2017(www.opensocietyfoundations.org/publications/lost-transition).1HIV/AIDS surveillance in Europe 20242023 dataSURVEILLANCE REPORT1.1 HIV diagnosesIn 2023,24 731 HIV diagnoses were reported in 30 countries of the EU/EEA,resulting in a rate of 5.3 per 100 000 population(Table 1).The highest rates were reported by Malta(21.0;114 cases)and Cyprus(17.6;162 cases),and the lowest by Slovenia(2.1;44 cases)and Austria(2.1;194 cases)(Table 1;Map 1).Of the HIV diagnoses reported in 2023,6 16.3%(4020 diagnoses)were among individuals with a previous positive HIV diagnosis.7 Section 1.2 will describe previous positive diagnoses in more detail.Unless otherwise specified,data presented in this section includes all HIV diagnoses reported,including both individuals with a previous positive HIV diagnosis and those diagnosed for the first time.6 Reported HIV diagnoses refer to all HIV diagnoses made and reported by a country within a specific year,encompassing both previous positive diagnoses and individuals who were diagnosed with HIV for the first time.7 Previous positive diagnoses are defined as HIV diagnoses made either abroad or in another setting within the reporting country,on any occasion before the current year of reporting.Some countries report previous positive HIV cases as they enter,re-enter or re-engage with the care system in the reporting country.As in previous years,more men than women were diagnosed with HIV in 2023(17 793 and 6688,respectively),resulting in an overall male-to-female ratio of 2.7(Fig.1.1.;Table 2,Table 3).This ratio was highest in Malta(21.6),Slovenia(13.6)and Spain(6.2)(Fig.1.1).The overall rate of diagnoses in men was 8.0 per 100 000 population(Table 2;Map 3)and for women 2.9 per 100 000 population(Table 3;Map 4).In addition to the 24 481 cases identified as either men or women,206 people(0.8%)identifying as transgender and 44 people(0.2%)with an unknown gender were reported in 2023.1.HIV and AIDS in the EU/EEAFig.1.1.Male-to-female ratio in HIV diagnoses,by country,EU/EEA,2023(n=24 481)0510152025FinlandEstoniaNorwayFranceSwedenIrelandLithuaniaCzechiaDenmarkBelgiumLatviaGermanyPortugalLuxembourgTotal EU/EEAPolandIcelandSlovakiaCyprusItalyGreeceRomaniaAustriaNetherlandsBulgariaHungaryCroatiaSpainSloveniaMaltaMale-to-female ratioNote:Liechtenstein reported only one case in 2023 and is excluded from the figure.2SURVEILLANCE REPORTHIV/AIDS surveillance in Europe 2024 2023 dataCountries reporting HIV diagnoses among transgender people include Belgium(1.9%;21 cases),France(2.6%;130 cases),Germany(0.3%;11 cases),Greece(0.4%;three cases),Ireland(0.9%;eight cases),Netherlands(3.5%;30 cases)and Portugal(0.3%;three cases).Age-specific rates were lowest among children under 15 years(0.2 per 100 000 population for both male and female)(Fig.1.2).In all other age groups,men had higher age-specific HIV diagnosis rates than women.The highest overall age-specific rate was observed in the age group 3039 years(13.1 per 100 000 population).Among men,the highest rate was in the age group 2529 years(19.6 per 100 000),while for women,it was in the age group 3039 years(7.2 per 100 000)(Fig.1.2).The overall mean age at diagnosis was 39.1 years;the mean age at diagnosis was lower for men who have sex with men(MSM)(36.6 years)than for cases attributed to injecting drug use(42.1 years overall,and similar in both women and men)or heterosexual transmission(41.2 years overall,39.4 in women and 42.1 in men).For transgender people,the mean age at diagnosis was 33.4 years.The highest proportion of transgender people(39.8%)were diagnosed between the ages of 30 and 39 years,followed by 24.3%in the age group 2529 years,15.5%in the age group 2024 years,13.6%aged between 40 and 49 years,5.3%among those aged over 50 years,and 1.5%in the age group 1519 years.The age group 3039 years accounted for the largest proportion of HIV diagnoses overall(32.3%),with 33.0%among MSM and 31.6%among those reporting heterosexual contact.In contrast,among people who inject drugs(PWID),most diagnoses(38.9%)were reported in the age group 4049 years(Fig.1.3).Fig.1.3.HIV diagnoses,by age group and transmission mode,EU/EEA,2023(n=18 003)020406080100Sex between menInjecting drug useHeterosexual contact1519 years2024 years2529 years3039 years4049 years50 yearsn=8 463n=1 112n=8 428PercentageTransmission modeNote:Estonia,Latvia and Poland were excluded from the figure as more than 50%of their reported cases did not include information on the mode of transmission.Fig.1.2.Age-and gender-specific rates of HIV diagnoses per 100 000 population,EU/EEA,2023(n=24 393)0510152050 40493039252920241519 15MenWomenHIV diagnoses per 100 000 populationAge category(years)Note:A total of 206 transgender people and 44 people with an unknown gender category reported in 2023 have been excluded from the calculations.3HIV/AIDS surveillance in Europe 2024 2023 dataSURVEILLANCE REPORTData on transmission mode provide information on the groups in the EU/EEA who are most affected by HIV(Fig.1.5;Tables 48):Sex between men is the most reported mode of transmission in the EU/EEA,accounting for 33.8%(8367)of all reported HIV diagnoses in 2023.Sex between men was one of the predominant modes of transmission(46.7%)where mode of transmission was known(Fig.1.5;Table 4,Table 8;Map 5)and accounted for more than 50%of reported HIV diagnoses in eight countries(Austria,Croatia,Greece,Hungary,Malta,Netherlands,Slovenia and Spain)(Fig.1.5).The majority(51.5%;4306)of people diagnosed with HIV attributed to sex between men were born in the reporting country.Among the 44.4%(3712)of MSM diagnosed with HIV who were migrants,46.9%(1740)originated from Latin America and the Caribbean,17.08%(634)from central or eastern Europe,10.6%(392)from Sub-Saharan Africa,9.6%(358)from western Europe,7.5%(279)from south and south-east Asia,and 8.3%(309)from other regions(Table 11).Sex between men and women remains one of the most common modes of HIV transmission reported in the EU/EEA,accounting for 33.4%(8254)of all HIV diagnoses and 46.0%of diagnoses where the route of transmission was known(Fig.1.5;Table 6,Table 8;Map 6).Among those with reported heterosexual transmission there are more women(53.8%;4437);than men(46.0%;3796).Heterosexual transmission accounts for more than 50%of all reported HIV cases in 13 EU/EEA countries(Bulgaria,Cyprus,Czechia,Denmark,Finland,France,Italy,Lithuania,Luxembourg,Norway,Portugal,Romania and Slovakia).Fig.1.4.Percentage of HIV diagnoses,by country and age group,EU/EEA,2023(n=24 617)Note:Liechtenstein reported one case for 2023.Unknown age is excluded from the proportions presented here.The figure is organized in descending order,from the highest to the lowest percentage of diagnoses among individuals younger than 30 years.020406080100LatviaFinlandDenmarkEstoniaLithuaniaNorwayItalySwedenSloveniaIrelandCzechiaNetherlandsGermanyAustriaEU/EEAPolandGreeceBelgiumLuxembourgMaltaCroatiaHungarySpainBulgariaFranceSlovakiaPortugalIcelandRomaniaCyprus1519 years 15 years2024 years2529 years3039 years4049 years50 yearsPercentageOne third(33.0%)of diagnoses attributed to sex between men were made before the age of 30,while over half(52.1%and 57.6%)of the HIV infections reported among men and women who had heterosexual contact and among people who were infected through injecting drug use,respectively,were diagnosed at 40 years or above.The age distribution of HIV diagnoses varied across countries.In Cyprus(37.3%),Romania(34.6%),Iceland(34.1%),and Portugal(32.6%),approximately one third of reported HIV diagnoses were among people under 30 years old.In contrast,in Latvia(61.7%),Italy(54.4%),Estonia(53.3%),Norway(52.4%),Finland(51.4%),and Lithuania(50.2%),over half of the HIV diagnoses were reported in people over 40 years of age(Fig.1.4;Table 9).4SURVEILLANCE REPORTHIV/AIDS surveillance in Europe 2024 2023 data One third(33.7%;2779)of reported diagnoses attributed to heterosexual transmission were among people born in the reporting country.More than half of the reported diagnoses(62.4%;5153)were among migrants.Half of these were among people born in Sub-Saharan Africa(50.0%;2738),followed by people from central and eastern Europe(26.6%;1454)and people from Latin America and the Caribbean(9.5%,521)(Table 11).Around four per cent(4.1%;1012 cases)of all reported HIV diagnoses and 5.7%of those with a known mode of HIV transmission were attributed to injecting drug use(Fig.1.5;Table 5,Table 8).Injecting drug use was the probable mode of transmission for 19.3%of cases diagnosed in Lithuania,18.6%in Greece,13.7%in Austria,12.4%in Finland,11.4 in Germany,and 11.3%in Norway(Fig.1.5;Map 7).Almost half of those with a reported diagnosis attributed to injecting drug use were born outside of the reporting country(47.6%;482 cases).Of these,83.8%(404 cases)were from other countries in central and eastern Europe.Mother-to-child transmission(MTCT)during pregnancy,childbirth or breastfeeding accounted for 0.9%of all reported HIV diagnoses and 1.2%of cases with a known mode of HIV transmission(Table 7,Table 11).Most of these cases were reported by France(28.1%),Germany(18.0%),Poland(6.9%)and Ireland(6.9%).Most of the people diagnosed with HIV due to MTCT were born outside of the reporting country(78.8%;171 cases),with 41.5%(90)coming from Sub-Saharan Africa.Forty-three diagnoses(0.2%)were reported to be due to contaminated transfusion of blood and its products,and 14 cases due to hospital-acquired infections(Table 8).Most of the transfusion-related cases(44.2%;19)and nosocomial acquired infections(50.0%;seven)were reported in people originating from central and eastern Europe(Table 11).Transmission mode was reported as unknown for 27.6%(6824)of diagnoses,with a wide variation among countries:less than 5%of diagnoses were reported with unknown transmission mode in Bulgaria,Cyprus,Iceland and Romania and over 50%in Estonia,Latvia and Poland(Table 8).In 2023,28 EU/EEA countries provided data on the country of birth,nationality or region of origin for 85.8%(21 230)of HIV diagnoses(Table 10).Among these,47.9%of total HIV diagnoses and 55.8%of those with known origin information(11 837 cases)were reported among migrants(Fig.1.6).Of these,31.8%(3770)were from Sub-Saharan Africa,30.0%(3548)(from central and eastern Europe,and 22.8%(2703)from Latin America and the Caribbean.In addition,5.1%(605)Fig.1.5.Percentage by transmission mode and country,HIV diagnoses with known mode of transmission,EU/EEA,2023(n=17 757)020406080100SloveniaCroatiaMaltaHungarySpainNetherlandsGreecePolandAustriaIcelandBelgiumEU/EEAIrelandPortugalGermanyItalySwedenLuxembourgCzechiaFranceCyprusBulgariaSlovakiaDenmarkRomaniaNorwayFinlandLithuaniaHeterosexual transmission(men)Heterosexual transmission(women)Injecting drug useOtherPercentageSex between menNote:Liechtenstein reported one case for 2023 and is excluded from the figure.Estonia,Latvia and Poland were excluded from the figure as more than 50%of their reported cases did not include information on the mode of transmission.A total of 6824 people with an unknown mode of transmission have been excluded from the proportions presented for the countries included in the figure.This figure is organized by proportion of diagnoses due to sex between men in descending order.5HIV/AIDS surveillance in Europe 2024 2023 dataSURVEILLANCE REPORToriginated from another western European country,5.0%(587)from south and south-east Asia,and 5.3%(624)(from other regions(Fig.1.6;Table 10).The countries with more than half of their HIV diagnoses among people originating from outside of the reporting country were Austria,Belgium,Cyprus,Czechia,Denmark,Estonia,Finland,France,Germany,Ireland,Luxembourg,Netherlands,Norway,Portugal,Slovakia,Spain and Sweden.For HIV diagnoses reported among transgender people in 2023,86.4%(178)originated from a country outside of the reporting country,12.1%(25)were born in the reporting country,and in 1.5%of cases(three),the region of origin was unknown.Among those whose regions of origin were known and who were born abroad,74.7%(133)came from Latin America and the Caribbean,11.8%(21)from Sub-Saharan Africa,7.9%(14)from central and eastern Europe,2.8%(five)from south and south-east Asia,1.7%(three)from other regions,and 1.1%(two)from other western European countries.Information on CD4 cell count at the time of HIV diagnosis was available for 59.8%(14 795)of adults and adolescents diagnosed across 27 countries.Twenty-one countries were able to provide CD4 cell counts for 50%or more of their reported cases,however Germany,Greece,Iceland,Ireland,Latvia and Slovakia were unable to do so.Hungary,Malta and Poland did not provide CD4 cell counts for 2023.To calculate late diagnoses,children under 15 years of age,acute cases and previously positive diagnoses were excluded from calculations(Table 12),resulting in a final total of 11 961 cases.More than half of these cases(52.7%)were considered to have been diagnosed several years after infection,with a CD4 cell count 350 cells per mm3.This included 31.6%of cases considered to have advanced HIV infection(CD4 cell count 200 cells per mm3)(Table 12).The proportion diagnosed late(CD4 cell count 350 cells per mm3)was above 60%in Slovenia(68.8%),Denmark(67.8%),Latvia(64.5%),Greece(64.2%),Bulgaria(61.7%),Croatia(60.9%),Czechia(60.1%)and Italy(60.1%).Among all cases diagnosed in 2023 with available information on CD4 cell count(11 961)and excluding previous positive cases,10.8%were diagnosed during acute infection8 and 24.0%were identified as recent infections(with a CD4 cell count of 500 cells per mm3 at diagnosis).More specifically,among MSM diagnosed in 2023,15.6%were reported as acute infections,and 26.4%had a CD4 cell count of 500 cells per mm3 at diagnosis(Fig.1.7).8 Acute infection status was reported by countries using one or more criteria for acute infection,including HIV negative test in the last six months,evidence of seroconversion illness,p24 antigen or an indication based on any other clinical or laboratory criteria.Fig.1.6.Percentage of HIV diagnoses among migrants out of all reported cases with known information on the region of origin,by country of report,EU/EEA,2023(n=21 230)020406080100RomaniaBulgariaHungaryItalyPolandLithuaniaGreeceCroatiaSloveniaSpainAustriaPortugalEU/EEAGermanyEstoniaFranceSlovakiaCyprusCzechiaFinlandLuxembourgBelgiumNetherlandsDenmarkSwedenNorwayIrelandIcelandSub-Saharan AfricaCentral and eastern EuropeWestern EuropeLatin America and the CaribbeanSouth and south-east AsiaOtherPercentageNote:Latvia and Malta were excluded from the figure as more than 50%of their reported cases did not include information on the mode of transmission.Liechtenstein is not included in the figure,as its single case was reported as being from the reporting country.A total of 3501 cases were reported with unknown region of origin.The figure is organized from countries with the highest proportion of migrants to those with the lowest.6SURVEILLANCE REPORTHIV/AIDS surveillance in Europe 2024 2023 dataWhen analysing CD4 cell count,the highest proportions of people presenting at a later stage of HIV infection(CD4 cell count 350 cells per mm3,excluding those previously diagnosed or with evidence of acute infection)were among women(58.2%),older adults(68.5%in those over 50 years,59.7%in the 4049 age group),men or women infected through heterosexual sex(63.8%and 58.2%,respectively),people who acquired HIV through injecting drug use(47.0%),and people coming from south and south-east Asia(61.1%)and Sub-Saharan Africa(58.6%)(Fig.1.8).The lowest proportions of late diagnosis(CD4 cell count 350 cells per mm3)were observed among younger age groups(40.8%of those aged 1519 years),men who acquired HIV through sex with another man(43.2%)and people coming from countries in western Europe(48.7%)(Fig.1.8).Fig.1.8.Percentage of people diagnosed late(CD4 cell count 350 per mm3)by demographic,EU/EEA,2023(n=11 961)010203040506070Western EuropeSub-Saharan AfricaSouth and south-east AsiaLatin America and the CaribbeanCentral and eastern EuropeNative to reporting countrySex between menInjecting drug useHeterosexual womenHeterosexual men50 40493039252920241519WomenMenTotalPercentageGenderAge group(years)Transmission modeRegion of originNote:This figure excludes cases with an unknown CD4 cell count,people with acute infection,those classified as previous positives cases,children younger than 15 years old and cases reported by countries that did not report CD4 cell counts.Fig.1.7.CD4 cell count cells per mm3 at HIV diagnosis and acute infection,by transmission mode,EU/EEA,2023 (n=11 961)020406080100Sex between menInjecting drug useHeterosexual contactPercentageTransmission mode350 to 500 200200 to 350500 AcuteNotes:This graph excludes cases with unknown CD4 cell count per mm3 and those defined as previous positive diagnosis.Hungary,Liechtenstein,Malta and Poland did not provide CD4 cell count per mm3 for 2023,therefore are not included in the figure.7HIV/AIDS surveillance in Europe 2024 2023 dataSURVEILLANCE REPORTInformation regarding CD4 cell count was available for 46.6%(96)of all transgender people reported(206).Of these,27.1%(26)were diagnosed at the stage of acute infection,33.3%(32)were identified as recent infections(with a CD4 cell count of 500 cells per mm3)and 29.2%(28)presented at a late stage of HIV infection(CD4 cell count 350cells per mm3),with 13.5%(13)(considered to have advanced HIV infection at diagnosis(CD4 cell count 91 daysPercentageTransmission modeNote:cases with no data or missing data on CD4 cell count or date of diagnosis,previous positive cases and those who died within 91 days of diagnosis are excluded from this figure.1.2 Previous positive diagnosesIn 2023,previous positive diagnoses accounted for 16.3%(4020)of the 24 731 reported HIV diagnoses,reflecting a 18.2crease from 2022,when the proportion was 19.5%(4912 out of 25 124).However,these figures are probably underestimated,as the variable identifying the HIV status as a previous positive or first-time diagnosis had a completeness of 57.1%.Bulgaria,Finland,Hungary,Italy,Lithuania,Malta,Poland,Romania and Spain were excluded from this analysis,as more than half of their HIV diagnoses reported in 2023 did not have data on this variable (Fig.1.10).When only considering the data from the 21 countries with sufficient reporting on this variable,the proportion of previous positive diagnoses increased to 22.9%(3463)of all HIV diagnoses reported by these countries in 2023(Fig.1.10).In five countries,more than 50%of the HIV diagnoses reported in 2023 were previous positives:Norway(65.7%),Iceland(61.4%),Ireland(55.9%),Sweden(52.6%)and Denmark(51.5%).When comparing people with previous positive HIV diagnoses to those newly diagnosed,a higher proportion are women(34.8%versus 28.3%),and a higher proportion are over 30 years of age(80.4%versus 73.2%).In addition,among those reported as previously positive compared to newly diagnosed there is a larger percentage of people born outside the reporting country(86.1%versus 52.3%)and a higher proportion coming from central and eastern Europe(27.3%versus 15.2%)and Sub-Saharan Africa(28.6%versus 20.8%)(Fig.1.11).In terms of transmission mode,among people with previous positive diagnoses,heterosexual contact was the primary route(39.2%),with a higher prevalence in women(25.5%)than in men(13.6%).Transmission through sexual contact between men is less common among those with previous positive diagnoses(33.0%).In addition,MTCT was reported at a higher rate among those with previous positive diagnoses(2.7%)compared to newly diagnosed people(0.7%).1.3 Trends in HIV diagnosesBetween 2014 and 2023,the trend in reported HIV diagnoses showed a decline,with the rate in consistently reporting EU/EEA countries dropping from 6.3 to 5.3 per 100 000 population,representing a 15.8crease.In 2023,24 731 HIV diagnoses were reported in 30 EU/EEA countries,9 corresponding to a rate of 5.3 per 100 000 population(Table 1).When compared to 2022,the rate remained unchanged at 5.3 per 100 000 population.As outlined in Section 1.2,a key factor contributing to the stabilization of reported cases in 2023,compared to 2022 HIV diagnoses,is the inclusion of previously diagnosed positive cases.9 All EU/EEA countries reported data for 2023.8SURVEILLANCE REPORTHIV/AIDS surveillance in Europe 2024 2023 dataWhen considering only new HIV diagnoses reported between 2014 and 2023(and excluding previously reported positive cases from countries with sufficient data)the rate for 2023 is 3.8 per 100 000.This marks an 11.3%increase on the 2022 rate of 3.4 per 100 000,but a 19.2crease on the 2014 rate of 4.1 per 100 000(Fig.1.12,Fig.1.13).In addition,as noted in Section 1.2,the number of previously positive cases decreased by 18.2%in 2023,which may account for the stabilization of the overall rate in 2023,at 5.3 per 100 000(see Fig.1.13),when previously positive cases are included in the trend analysis.The number of AIDS diagnoses has remained stable and unchanged in recent years,with the rate consistently between 1.0 and 1.1 per 100 000 since 2019.The only change in morbidity is related to AIDS-related deaths.The death rate in 2023,at 0.14 per 100 000 population,reflects a decrease of 14.3%on the 2022 rate of 0.16 per 100 000 population.Trends vary by gender and age group.Age-specific rates declined from 2014 to 2020,followed by a plateau between 2020 and 2021,and a sudden increase in 2022 across most age groups for both women and men.The only group that continued to see an increase from 2022 to 2023 was women aged 15 to 24 years,with a rise of 15.8%.Among men,the increase was most notable in those aged 15 to 19 years,where the rate rose by 20.6%,from 1.9 in 2022 to 2.3 in 2023(Fig.1.14a,Fig.1.14b).HIV diagnoses among people born outside of the reporting country,excluding Finland,Latvia,Malta and Slovakia(where more than 50%of reported cases have an unknown region of origin),accounted for 44.6%of all diagnoses in 2014.This proportion increased over time to 50.1%in 2020,then slightly decreased to 46.3%in 2021,before rising again to 53.6%in 2022 and declining to 47.9%in 2023.When analysing data excluding cases with an unknown region of origin,the proportion of migrants among HIV diagnoses increased from 47.3%in 2014 to 55.8%in 2023,representing a 17.9%rise over the period.However,compared to 2022,there was a decrease of 19.0%,down from 68.9%.In particular,there was a 20.4%increase in diagnoses among people coming from Sub-Saharan Africa,rising from 2566 reported diagnoses in 2022 to 3090 in 2023.In contrast,there was a 32.5crease in diagnoses among people coming from central and eastern Europe,with cases dropping from 4131 in 2022 to 2789 in 2023(Fig.1.15).Fig.1.10.Percentage of previous positive diagnoses and new HIV diagnoses by country of report,21 EU/EEA countries,2023(n=15 150)020406080100LiechtensteinLatviaAustriaGermanyGreecePortugalLuxembourgAverage EU/EEAEstoniaCzechiaBelgiumCyprusFranceNetherlandsDenmarkSwedenIcelandSloveniaCroatiaNorwaySlovakiaIrelandNew HIV diagnosesPrevious positive diagnoses Unknown PercentageNote:Countries with more than 50%unknown for the variable identifying the HIV status as a previous positive or first-time diagnosis are excluded from the figure.Countries included in the figure:Austria,Belgium,Croatia,Cyprus,Czechia,Denmark,Estonia,France,Germany,Greece,Iceland,Ireland,Latvia,Liechtenstein,Luxembourg,Netherlands,Norway,Portugal,Slovakia,Slovenia and Sweden.9HIV/AIDS surveillance in Europe 2024 2023 dataSURVEILLANCE REPORTFig.1.11.Demographic and epidemiological characteristics of previous positive diagnoses and new HIV diagnoses by 21 EU/EEA countries,2023(n=15 150)01020304050607080UnknownMTCTSex between menInjecting drug useHeterosexual contact(females)Heterosexual contact(males)50 40493039252920241519 15 yearsTrangender Male Female PercentageNew HIV diagnosesPrevious positive diagnosesGenderAge group(years)Transmission modeRegion of originWestern EuropeUnknownSub-Saharan AfricaSouth and south-east AsiaReporting country OtherLatin America and the CaribbeanCentral and eastern EuropeNote:Countries with more than 50%unknown for the variable identifying the HIV status as a previous positive or first-time diagnosis are excluded from the figure.Countries included in the figure:Austria,Belgium,Croatia,Cyprus,Czechia,Denmark,Estonia,France,Germany,Greece,Iceland,Ireland,Latvia,Liechtenstein,Luxembourg,Netherlands,Norway,Portugal,Slovakia,Slovenia and Sweden.10SURVEILLANCE REPORTHIV/AIDS surveillance in Europe 2024 2023 dataFig.1.14a.Age-specific trends in HIV diagnoses in women,20142023024681020232022202120202019201820172016201520143039 years2529 years4049 years2024 years1519 years50 years 15 yearsDiagnoses per 100 000 populationYear of diagnosisFig.1.12.Temporal trends in HIV diagnoses reported by 21 EU/EEA countries:comparison of trends including and excluding previous positive diagnoses,20142023(n=152 157)0200040006000800010 00012 00014 00016 0002023202220212020201920182017201620152014New HIV and previous positive diagnosesNew HIV diagnosesPrevious positive diagnosesUnknown HIV status Number of casesYear of diagnosisNote:Countries with more than 50%unknown for the variable identifying the HIV status as a previous positive or first-time diagnosis are excluded from the figure.Countries included in the figure:Austria,Belgium,Croatia,Cyprus,Czechia,Denmark,Estonia,France,Germany,Greece,Iceland,Ireland,Latvia,Liechtenstein,Luxembourg,Netherlands,Norway,Portugal,Slovakia,Slovenia and Sweden.Fig.1.13.People diagnosed with HIV,AIDS and AIDS-related deaths reported per 100 000 population,EU/EEA,20142023012345672023202220212020201920182017201620152014HIV diagnoses(including previous positive diagnoses)New HIV diagnoses AIDS AIDS-related deaths Rate per 100 000 populationYear of diagnosisNote:rates exclude countries not reporting consistently over the period:Germany and Sweden(AIDS diagnosis and AIDS deaths).The newly diagnosed cases rate was calculated by removing previous positive cases from the 21 EU/EEA countries with sufficient reporting on this variable to exclude these cases(see Chapter 1.2 for more details).AIDS diagnosis and AIDS-related death rates were not impacted by previous positive cases and these rates are not adjusted.11HIV/AIDS surveillance in Europe 2024 2023 dataSURVEILLANCE REPORTSince 2014,most of the EU/EEA countries have maintained consistent reporting on transmission routes.However,for the transmission analysis,HIV diagnoses reported by Estonia,Latvia and Poland were excluded due to incomplete reporting on transmission mode during some years of the previous decade.When focusing on data from those countries that have consistently reported over the past decade(20142023)and analysing data with known routes of transmission,the following trends become evident:The proportion of HIV diagnoses with a known route of transmission attributed to sex between men decreased from 52.1%in 2014 to 46.9%in 2023.A slight decrease in reported HIV diagnoses among MSM was observed in 2021(7575 diagnoses),followed by an increase in 2022(8207 diagnoses),with the number remaining relatively stable in 2023(8078 diagnoses)(Fig.1.16a,Fig.1.16b).Among MSM who were migrants,there was a 37.7%increase in HIV diagnoses,rising from 2659 in 2014 to 3661 in 2023(Fig.1.17).The proportion of HIV diagnoses with a known mode of transmission attributed to heterosexual transmission in both women and men increased from 41.4%in 2014 to 46.2%in 2023.Among men,this proportion showed a slight increase,from 20.6%to 21.3%over the period.In contrast,the increase among women was more pronounced,rising from 20.7%to 24.9%of HIV diagnoses with known transmission information(Fig.1.16b).A smaller increase was also observed among heterosexual migrants,with diagnoses rising from 4889 in 2014 to 4990 in 2023,representing a 2.1%increase.It is also worth noting that there was a 4.5%increase in the number of reported diagnoses among heterosexual people born in the reporting country from 2022(2560 cases)to 2023(2676 cases)(Fig.1.17).The overall number of HIV diagnoses reported among PWID slightly decreased,from 1401 cases in 2014 to 1212 cases in 2023(see Fig.1.16a,Fig.1.17;Table 5),010203040506070802023202220212020201920182017201620152014PercentageYear of diagnosisWestern EuropeSub-Saharan AfricaCentral and eastern EuropeLatin America and the CaribbeanSouth and south-east AsiaOtherFig.1.15.Percentage of diagnoses among people born outside of the reporting country by year of diagnosis and region of origin,EU/EEA,20142023Note:HIV reported diagnoses from Finland,Latvia,Malta and Slovakia have been excluded from this figure as more than 50%of reported cases in these countries have an unknown region of origin.From 2014 to 2023,a total of 122 293 reported HIV diagnoses were excluded from the countries included in the figure due to an unknown region of origin.The proportions are calculated based on the total number of cases reported with a known region of origin for the entire period (n=118 786).Fig.1.14b.Age-specific trends in HIV diagnoses in men,2014202305101520252023202220212020201920182017201620152014Diagnoses per 100 000 populationYear of diagnosis1519 years 15 years2024 years2529 years3039 years4049 years50 years12SURVEILLANCE REPORTHIV/AIDS surveillance in Europe 2024 2023 dataFig.1.17.HIV diagnoses,by year of diagnosis,transmission mode and migration status,EU/EEA,20142023200040006000800010 0002023202220212020201920182017201620152014Heterosexual(foreign-born)Sex between men(born in reporting country)Sex between men(foreign-born)HIV diagnosesYear of diagnosisInjecting drug use(born in reporting country)Injecting drug use(foreign-born)Heterosexual(born in reporting country)Note:data from Estonia,Finland,Latvia,Malta,Poland and Slovakia were excluded from the figure due to over 50%of their reported cases having either an unknown region of origin or an unknown mode of transmission during some years of the previous decade.Fig.1.16b.Percentage of HIV diagnoses,by year of diagnosis and transmission mode,EU/EEA,201420230204060801002023202220212020201920182017201620152014PercentagesYear of diagnosis Sex between men Heterosexual transmission(men)Heterosexual transmission(women)Injecting drug useMother to child transmissionNote:cases where transmission route was“Unknown”or“Other”are not presented here.HIV diagnoses reported by Estonia,Latvia and Poland were excluded due to incomplete reporting on transmission mode during some years of the previous decade.Fig.1.16a.HIV diagnoses,by year of diagnosis and transmission mode,EU/EEA,201420230200040006000800010 00012 0002023202220212020201920182017201620152014Number of casesYear of diagnosisSex between menHeterosexual transmission(women)Heterosexual transmission(men)Injecting drug useMother to child transmissionNote:HIV diagnoses reported by Estonia,Latvia and Poland were excluded due to incomplete reporting on transmission mode during a portion of the previous decade.13HIV/AIDS surveillance in Europe 2024 2023 dataSURVEILLANCE REPORT1.4 AIDS cases,morbidity and mortalityAlthough there have been improvements in the early diagnosis of HIV,2690 diagnoses of AIDS were reported by 26 EU/EEA countries in 2023 a crude rate of 0.7 AIDS diagnoses per 100 000 population(Table 13;Map 8).The highest rate was reported by Latvia(2.4 per 100 000 population;45 cases)followed by Romania(1.4 per 100 000;267 cases).The rate of reported AIDS cases has decreased by 36.4%over the past decade(excluding Cyprus,Germany,Liechtenstein and Sweden which did not report consistently over the period),a reduction from the 1.1 per 100 000 reported in 2014(Table 13).This decline is noted in both men and women;however,it is more pronounced in men.Among men,the rate decreased from 1.7 per 100 000 population in 2014 to 1.1 per 100 000 population in 2023,while among women,the decline was from 0.6 per 100 000 population in 2014 to 0.3 per 100 000 in 2023(Tables 1415).When considering different transmission modes,a decrease is observed across all cases with a known mode of transmission,except for those where heterosexual transmission may be the mode of transmission.Among women,there was a 6.3%increase in reported cases,rising from 505 in 2022 to 537 in 2023.Similarly,among men there was an 11.2%increase,with cases rising from 694 in 2022 to 772 in 2023(Fig.1.19).The most common AIDS-indicative conditions diagnosed in 2023 in the EU/EEA were Pneumocystis jirovecii pneumonia(22.1%of all AIDS-indicative diseases),wasting syndrome due to HIV(11.4%)and oesophageal candidiasis(11.0%)(Table 16).Combined pulmonary and/or extrapulmonary tuberculosis made up 13.6%of AIDS-indicative diseases.Twenty-six EU/EEA countries(all but Cyprus,Germany,Liechtenstein and Sweden)reported data on deaths of those diagnosed with AIDS.Overall,663 people were reported to have died due to AIDS-related causes during 2023(Table 17),although these data are affected by under-reporting due to the challenges in many countries in linking to death registries.AIDS-related death reports have declined by 63.0%since 2014,when there were 1792 deaths.Howe
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RARE DISEASESImpact,landscape,and possibilitiesCAS INSIGHTSTMRare diseases,or orphan diseases,are a group of disorders that,despite affecting relatively few patients at the individual disease level,collectively affect many worldwide.The World Health Organization(WHO)defines a rare disease as one that affects fewer than 65 per 100,000 people;1 however,when combined,would represent approximately 46%of the total worldwide population.13 Due to the rarity of the individual diseases,their complex presentation,and lack of clinician awareness,these conditions are often misdiagnosed or underdiagnosed.4,5 Rare disease treatment and research,such as clinical trial recruitment,is further complicated by small patient populations and underfunding,and as a result,research does not advance as quickly relative to common diseases.1 The term“orphan disease”stems from this unmet need and the perception that rare diseases have been left“orphaned”by the pharmaceutical industry,with access to specialized healthcare and support made difficult for people living with such conditions.In recent years,awareness of rare diseases has grown,and there have been increased efforts in research to address unmet needs in the field.Most rare diseases are genetic in etiology;consequently,research to identify genetic variants should provide the first steps toward a better understanding of the causes of these conditions.For example,advances in genomic sequencing and precision medicine could improve the diagnosis and targeted treatment of patients with rare diseases.Initiatives and incentives such as the orphan drug legislation have also encouraged pharmaceutical companies to invest more resources in rare disease research.611 This is important because research investment in rare diseases can have positive impacts beyond their small patient populations.Research in rare diseases can lead to breakthroughs in the understanding of more common diseases,such as uncovering shared mechanisms in disease pathophysiology and opening up new treatment pathways for patients.12 An example of this is research around progerin in Hutchinson-Gilford Progeria syndrome(HGPS).HGPS is a rare disease that causes premature aging,and HGPS research may offer insights into common cardiovascular diseases such as heart attacks and strokes.13 This CAS Insights report describes how the CAS Content Collection,the largest human-curated collection of published scientific information,was instrumental in capturing an overview of the changing landscape of rare diseases.14 Through analysis of the research and publications landscape,we have captured insights into the progress of rare disease medicine,including challenges and potential opportunities for growth.IntroductionRARE DISEASES REPORT|3Publication and patent landscape:what is on the horizon for rare diseases?Figure 1.Numbers of publications relating to rare diseases from the CAS Content Collection for the period 20032023.Number of publications30,00025,00040,00035,00020,00015,00010,0005,0000202320222021202020192018201720162015201420132012201120102009200820072006200520042003JournalPatentPublication yearThe CAS Content collection currently houses over 530,000 publications about rare diseases,comprised of both journal articles and patents.Analysis of this collection helped identify key trends around prominent research institutions,leading journals,and rare diseases currently of high commercial interest.This report will focus on three rare diseases:amyotrophic lateral sclerosis(ALS),Huntingtons disease(HD),and myasthenia gravis(MG).Over the last decade,both journal and patent publications have been on the rise(Figure 1),with rapid growth in the number of journal publications,particularly between 20192021,whereas the increase in patent publications has been steadier.To identify leading research organizations actively publishing rare disease scientific content,institutions were ranked by publication volume and impact,which was calculated using the average number of citations per publication.Of the leading 15 institutions,67%originated from the United States(including Harvard Medical School),20%from Canada(including the University of British Columbia),and 13%from Great Britain(including the University of Oxford).Leading scientific journals for rare diseases were identified using similar methodology,including the New England Journal of Medicine(New Engl J Med),Journal of Clinical Oncology(J Clin Oncol),and Proceedings of the National Academy of Sciences(Pro Natl Acad Sci USA).Analysis of rare diseases revealed that the highest interest in journal articles was found in HD,15,16 MG,17 ALS,1820 rare tumors and cancers,2127 and systemic lupus erythematosus(SLE).2830 The continual scientific interest stemming from rare diseases means research can lead to high-impact publications,such as“Targeting huntingtin expression in patients with Huntingtons disease”,31 published in 2019 by researchers in the UK in the New England Journal of Medicine.The article described the results of a Phase I/IIa trial for an oligonucleotide designed by Ionis Pharmaceuticals and F.HoffmannLa Roche to inhibit messenger ribonucleic acid(mRNA)of HTT,the main gene responsible for HD,and has since been cited over 400 times.Capturing the fieldPatent publication trends also indicate areas of research interest and were analyzed by country/region.The results showed that the list of top ten patent assignee countries/regions included seven common to both commercial and non-commercial entities(Figure 2).The US is the highest by countries/regions,contributing 31%and 40%to non-commercial and commercial patents,respectively.Figure 2.Leading organizations in the field of rare diseases from assessment of patent publication data from the CAS Content Collection for the period 2003 to 2023.(A)Donut and(B)bar charts showing geographical distribution and leading organizations,respectively.Regions and institutions were separated into non-commercial and commercial categories.Bar colors in the bar charts correspond to countries or regions shown in the donut charts.Countries or regions represented by their standard three-letter codes United States(USA),China(CHN),South Korea(KOR),France(FRA),Germany(DEU),Japan(JPN),Spain(ESP),Denmark(DEN),Italy(ITA),Belgium(BEL),Switzerland(CHE),Israel(ISR),and United Kingdom(GBR).OthersBELITADENESPJPNDEUFRAKORCHNUSA18%21%9%9%4%3%3%3%3%Number of patent publications6005008009007004003002001000University of CaliforniaINSERMJohns Hopkins UniversityKISTUnited States Dept.of HealthUniversity of PennysylvaniaChina Pharmaceutical UniversityUniversity of TexasYale UniversityHarvard UniversityDuke UniversityColumbia UniversityStanford UniversityZhejiang UniversityKRIBBANon-commercial patent assignees(20032023)Commercial patent assignees(20032023)OthersISRDENFRAKORGBRJPNCHEDEUCHNUSA18%2%2%6%4%4%4%4%3%Number of patent publications600100012008004002000MerckNovartisBristol-Myers SquibbJanssenF.Hoffman-La RocheGenentechBoehringer IngelheimPfizerVertex Pharmaceuti-calsAstraZenecaBiogenAmgenSchering-PloughGlaxoSmithKlineNeiroSearchBPatent filing can be a key indicator of the commercialization of promising research.The University of California is the top non-commercial patent assignee in the rare diseases space and,since 2015,has filed patents for treatments in ALS(WO2023086603,32 WO2022104148),33 HD(WO2022165538A1),34 and MG(WO2018236955,35 WO2018049053).36 Analysis of the patents from the top six commercial companies helped shed further light on the spread of commercial interest across rare diseases.The following diseases were subsequently found to be of high commercial interest to the top six companies:multiple sclerosis,37 SLE,38 scleroderma,39 and HD,as seen by the higher publication volume versus other diseases.Additionally,kidney cancer,40 thyroid cancer,41 melanoma42 and multiple myeloma,43 all had relevant patents filed by all six commercial companies.However,the number of patent publications indicates that not all rare diseases are being explored to the same extent.Examples of rare diseases with apparent low commercial interest include iridocyclitis,44 familial Mediterranean fever,45 Rett syndrome46 and pseudoaldosteronism.47 Commercially underexplored rare cancers include nasopharyngeal carcinoma,48 blastic plasmacytoid dendritic cell cancer49 and B-cell prolymphocytic leukemia.50,51 To identify the leading rare diseases in terms of published research,analysis of the CAS Content Collection dataset investigated trends in both journal articles and patents categorized by condition.ALS,HD,and MG publication volumes identified them as leading research areas.The evolution of interest in these and other rare diseases over the last five years is shown below(Figure 3);HD,ALS,and MG show a clear,steady,and consistent increase in publications.This increase is most evident for MG,with publications nearly doubling in this 5-year period.The patent-to-journal ratio of rare diseases was analyzed;7 out of 14 scored 1,indicating greater commercial than general research interest.Of the leading rare diseases covered in this report,HD and MG had a patent-to-journal ratio of 1,whereas ALS had a patent-to-journal ratio of 0.7,indicating greater interest from the noncommercial community.The increased interest in ALS could be attributable to the viral“ice bucket”phenomenon,which may translate to greater commercial interest a few years down the line.Similarly,interest in rare cancers is generally rising,with a broad increase in publications and all selected rare cancers showing clear,consistent,and rapid increases in publication numbers.Of special note are Kaposis sarcoma52(cancer affecting the lining of blood vessels and lymph nodes),glioblastoma53(cancer of the brain and/or spinal cord),and thyroid cancer41 with publications more than doubling between 2019 and 2022.Rare cancers generally are of high commercial interest,with 70%having patent-to-journal ratios 1.Commercial interest in rare diseasesARARE DISEASES REPORT|5Our analysis of the metrics of rare disease publications has shown that despite small patient populations,the research community has not forgotten the impact of rare diseases and continues to focus on these conditions.The trends identified in this report suggest that interest in rare diseases is increasing and will offer more opportunities in the future.Relative growth(%)20405030100Multiple sclerosisSystemic lupus erythematosusSclerodermaHuntingtons diseaseCystic fbrosisAmyotrophic lateral sclerosisSarcoidosisCreutzfeldt-Jakob diseaseProgressive supranuclear palsyGuillain-Barre syndromeSjgren syndromeMyasthenia gravisGraves diseaseJuvenile rheumatoid arthritis201820192020202120222023Figure 3.Number of publications(journal and patent)for selected leading rare diseases from the CAS Content Collection.HD,ALS,and MG are highlighted in dashed boxes.Data includes patent and journal publications sourced for the period 20182023 in the field of rare diseases.ARARE DISEASES REPORT|7Research efforts continue to improve our understanding of rare diseases,from their root causes and mechanisms,to their application in novel treatment pathways.Myasthenia gravisMG is a rare,chronic,autoimmune neuromuscular disorder characterized by weakness and rapid fatigue of voluntary muscles,5457 In MG,self-production of antibodies against acetylcholine(ACh)receptor(AChR)or muscle-specific kinase are believed to be the main causes of this condition,57,58 triggering the immune system to mistakenly attack receptors on muscle cells,particularly at the neuromuscular junction,and subsequently hindering muscle contraction (Figure 4).5961Behind the scenes:from genetics to the pathogenesis of rare diseasesFigure 4.Pathogenesis of MG schematic,detailing the three effects of antibodies at the neuromuscular junction and their consequent damaging effects.6264 ACh,acetylcholine;AChR,acetylcholine receptor;NMJ,neuromuscular junction.Anti-AChR antibodiesComplement systemAChC)binding of antibodies to AChR can also activate the complement system that leads to damage and dysfunction of the NMJImpaired signal transmission Endplate and postsynaptic membrane destruction,as well as alterations to AChR distributionB)antibodies may cross-link adjacent AChR molecules,internalizing and degrading the AChR complex(A)antibodies block the binding sites on the AChRNeuronMuscleAutoantibodies are thought to be produced by the thymus,which may also contribute to the maturation of autoreactive T cells involved in the autoimmune response in MG.Symptoms caused by the autoimmune effects of MG can vary widely and complicate diagnosis over time.However,the hallmark symptom of MG is muscle weakness,typically worsening with activity and improving with rest.6569Despite not being considered a purely genetic disorder,MG has a complex genetic background.As such,MG is regarded as an autoimmune disease with genetic predispositions.Certain genetic variations or polymorphisms may predispose an individual to develop MG.Often,these variations are observed in immune system function genes,such as those encoding human leukocyte antigens(HLAs),specifically the HLA-B8 and HLA-DR3 alleles,7076 and HLA alleles within the major histocompatibility complex(MHC)region.77 Environmental triggers likely interact with genetic susceptibility factors to influence individual development of MG.75 Through the analysis of the CAS Content Collection,we have collated four genes that are associated with MG(Figure 5).Treatments for MG,such as acetylcholinesterase inhibitors,immunosuppressants,and corticosteroids,aim to manage symptoms and improve quality of life.However,no cure is currently available.7981Figure 5.Genes associated with MG based on data from the CAS Content Collection.Only genes with an association score78 of greater than 0.4 and at least ten records are shown.The majority of records were obtained from text mining.Myasthenia gravisGeneAGRN 0.4LRP4 0.4MUSK 0.4TTN 0.4ACHE 0.7ProteinAgrinLow-density lipoprotein(LDL)receptor related protein 4Muscle associated receptor tyrosine kinase(MuSK)TitinAcetylcholinesterase(AChE)RoleAgrin is a protein involved in development of the NMJ;autoantibodies against agrin have been detected in patients with MG.The LRP4 protein is involved in NMJ signaling;autoantibodies against LRP4 have been detected in individuals with MG.MuSK plays a role in NMJ signaling,and can be used to categorize the MuSK-MG disease subtype,which may be associated with worse patient outcome than other subtypes.Titin plays a key role in muscle contraction,and autoantibodies against titin have been reported in MG patients with thymoma.AChE is an enzyme that helps in breakdown and recycling of acetylcholine as a way to terminate cholinergic signaling.AchE has been studied in the context of a number of diseases including Alzheimers and Parkinsons.RARE DISEASES REPORT|9Amyotrophic lateral sclerosisALS(also known as motor neuron disease or Lou Gehrigs disease)is a rare,progressive,neurodegenerative disorder.ALS affects motor neurons in the brain and spinal cord that control voluntary muscle movement,and the resulting dysfunction leads to muscle weakness,atrophy,and paralysis(Figure 6).8287Figure 6.Pathogenesis of ALS schematic,detailing the effects of the condition on motor neurons and their cellular structure.Glutamate,8890 protein aggregation,9194 mitochondrial dysfunction,9597 and non neuronal cells all play key roles in ALS pathology.98103Illustration courtesy of https:/ molecules324ROS?ROSEnergyProtein aggregatesMotor neuron1 GlutamateOligodendrocyteMicrogliaAstrocyteEnergyNucleusMutationsSOD1,TARDBP,FUS,and C9orf721 Excessive levels of glutamate are observed in the synaptic cleft.This can damage motor neurons,contributing to their degeneration and death.2 Mutations in SOD1,TARDBP(encoding TDP-43),FUS,and C9orF72 may lead proteins to aggregate and accumulate within motor neurons and surrounding cells.3 In the mitochondria,impaired energy metabolism and increased production of reactive oxygen species impacts motor neuron degeneration.4 Non-neuronal cells such as astrocytes,microglia,and oligodendrocytes play important roles in ALS pathogenesis.ALS,like MG,also has roots in genetics;however,the condition has been hypothesized not to be a single-gene disease but a plethora of overlapping conditions with common characteristics and genetic factors.104,105 As a result,diagnosis is complex,and treating physicians need to consider each individuals medical history,neurological examinations,imaging,electromyography,and nerve conduction study results,as well as the possibility of a differential diagnosis against other plausible causes of muscle weakness and motor dysfunction.106,107 The genetic background of ALS is multifaceted,involving both familial and sporadic forms.While most ALS cases occur without a clear family history,possibly due to a combination of genetic susceptibility and environmental factors,approximately 510%of cases have a known genetic component(Figure 7).108113 Significant genetic heterogeneity of ALS leads to distinct clinical phenotypes that are associated with disease progression.108,114,115RoleMutations in SOD1 are believed to induce protein misfolding,leading to ALS.Mutations in senataxin are thought to affect its function,leading to juvenile ALS-4,which develops in patients before the age of 25 years.Mutations in TDP-43 may affect gene expression,resulting in some pathologies seen in ALS,such as fibril formation and RNA regulation.Mutations may alter optineurins ability to interact with and consequently remove damaged mitochondria.Mutations in Sequestosome 1 may impair removal of misfolded or aggregated protein,and reduce autophagy.ProteinSuperoxide dismutase 1SenataxinTDP-43Optineurinp62 protein/Sequestosome 1GeneSOD1 1.0SETC 1.0TARDBP 0.9OPTN 0.9SQSTM1 0.9ANG 0.9VAPB 0.9PRPH 0.9CHCHD10 0.9TBK1 0.9NEFH 0.9Amyotrophic lateral sclerosis(ALS)GeneFUS 0.9PRN1 0.9MATR3 0.9UBQLN2 0.9ALS2 0.8ProteinFused in sarcoma(FUS)RNA binding proteinProfilin 1Matrin 3Ubiquilin 2AlsinRoleMutant FUS has reduced ability to bind to a nuclear import receptor,resulting in accumulation of mutant FUS in the cytoplasm.Mutations in profilin 1 may result in its aggregation alongside TDP-43,which may contribute to ALS-related dysfunctions.Matrin 3 is a DNA/RNA-binding nuclear protein that interacts with TDP-43 and FUS,and may have a role in ALS.Mutant ubiqilin may have reduced capacity for protein degradation through affected interactions with binding partners and other proteins.Some alsin mutations associated with ALS result in expression of forms without crucial domains,reducing the functionality of alsin as a guanine nucleotide exchange factor.RARE DISEASES REPORT|11Figure 7.Genes associated with ALS based on data from the CAS Content Collection.Only genes with an association score greater than 0.6 and at least 10 records are shown here.Color corresponds to association score:yellow(1.0),light green(0.9),orange(0.8),purple(0.7)and aqua(0.6).The nature of the line indicates the association source,with dashed lines indicating a majority of records resulting from text mining.RoleMutations in SOD1 are believed to induce protein misfolding,leading to ALS.Mutations in senataxin are thought to affect its function,leading to juvenile ALS-4,which develops in patients before the age of 25 years.Mutations in TDP-43 may affect gene expression,resulting in some pathologies seen in ALS,such as fibril formation and RNA regulation.Mutations may alter optineurins ability to interact with and consequently remove damaged mitochondria.Mutations in Sequestosome 1 may impair removal of misfolded or aggregated protein,and reduce autophagy.Angiogen is known for participating in blood vessel formation and other pathways,and research is ongoing to uncover its complex role in ALS.VAPB interacts with a number of partners;one extensively studied mutation has several proposed mechanisms in ALS.Upregulation of peripherin(thought to be involved in neuronal growth)has been reported to have neurotoxicity in mouse models.CHCHD10 mutation and overexpression are associated with mitochondrial abnormalities.Mutations are thought to affect the autophagy function of TBK1.Neurofilaments have a role in the regulation of axon diameter and growth,and mutations have been reported in ALS.angiogeninVesicle-associated membrane protein(VAMP)-associated protein B and C(VAPB)PeripherinCoiled-coil-helix-coiled-coil-helix domain containing protein 10TANK binding kinase 1Neurofilament heavy chainANG 0.9VAPB 0.9PRPH 0.9CHCHD10 0.9TBK1 0.9NEFH 0.9Amyotrophic lateral sclerosis(ALS)GeneFUS 0.9PRN1 0.9MATR3 0.9UBQLN2 0.9ALS2 0.8FIG4 0.8KIF5A 0.8ERBB4 0.8CCNF 0.7ANXA11 0.7NEK1 0.6Polyphosphoinositide phosphataseKinesin family member 5AErb-b2 receptor tyrosine kinase 4(ErbB4)Cyclin FAnnexin A11NIMA-related kinase 1There is evidence FIG4 mutations could disrupt intracellular trafficking due to excessive vacuoles,though this mutation is still being investigated.It has been demonstrated that a KIF5A mutation disrupts the autoinhibition of kinesin family member 5A,leading to increased mitochondrial transport.ErbB4 interacts with a number of partners;one reported ALS mutation results in reduced autophosphorylation.Mutant CCNF causes abnormal ubiquitination and is believed to contribute to ALS.Mutant annexin A11 has been reported to increase formation of insoluble aggregates,disrupt Ca2 homeostasis,and interfere with RNA transport.NIMA-related kinase 1 has a large role in cellular processes,and two main mutations(a loss of function and missense variant)are thought to be associated with ALS.Figure 8.Potential pathogenesis of HD schematic.The CAG repeat in HTT encodes for mHTT,causing aggregation and inclusion bodies.mHTT causes mitochondrial dysfunction,excitotoxicity,dysregulation of axonal transport and synaptic processes,and neuroinflammation.132143 Illustration courtesy of https:/HD is a rare,hereditary,neurodegenerative disorder causing progressive motor impairment,cognitive decline,and psychiatric symptoms.The associated motor symptoms include jerky and unpredictable movements in the face,arms,and legs.116118The pathogenesis of HD involves a complex interplay of genetic,molecular,and cellular mechanisms that ultimately lead to neurodegeneration in specific regions of the brain(Figure 8).119122 HD is caused by a mutation in the HTT gene,which encodes for a mutant huntingtin protein(mHTT).The mHTT causes disturbances to normal cellular and neuronal functions and exacerbates neurodegeneration,including altered gene expression patterns and impaired neuronal function,survival,and plasticity,123125 eventually leading to cell death.126129 Synaptic dysfunction is also an early feature of HD that contributes to cognitive and motor impairments.130,131Huntingtons diseaseHuntingtons disease pathogenesis3Motor neuronNucleusmHTT aggregates4mHTT impaired delivery to synapsesAxonal transport5Neuroinflammation leads to neurodegenerationExcess glutamate?Fragmentation?Oxidative stress?EnergyMutationsThe main mutation in HD is a CAG repeat in HTT,which encodes for mHTT121 mHTT causes misfolding and aggregation of the protein,creating the so-called inclusion bodies and accumulating within neurons.2 Mitochondrial function is affected,impairing energy production,increasing oxidative stress,and mitochondrial fragmentation.3 Dysregulation of glutamate signaling and excitotoxicity from astrocyte dysfunction may occur.4 Axonal transport and synaptic processes are affected,with mHTT impairing the delivery of essential proteins and organelles to synapses.5 Neuroinflammation contributes to HD pathogenesis.RARE DISEASES REPORT|13Figure 9.Genes associated with HD,based on data from the CAS Content Collection.Only genes with an association score greater than 0.8 and at least ten records are included.Color corresponds to association score:yellow(1.0),green(0.9)and orange(0.8).The majority of records were gathered from text mining.Currently,no cure is available for HD,with treatments focusing on managing symptoms and improving quality of life.Disease-modifying treatments are the goal of ongoing research efforts,and an increased understanding of the underlying mechanisms of HD is important to achieve this.Current clinical trials focus on therapies that target the mutant huntingtin protein,neuroinflammation,and other factors of HD pathogenesis.144,145HD is an“autosomal dominant”disease,meaning affected individuals may have only inherited one expanded CAG repeat from one of their parents.The age of onset and severity of symptoms can vary widely among individuals,146 but often,the longer the CAG repeats,the earlier the onset and the higher the severity of the disease.119,126,147,148 Other genetic factors may also influence the onset and progression pattern of HD,and predictive genetic testing is available to help inform individuals at risk of HD.Those invited for testing are advised to attend genetic counseling to discuss their results with a genetic counselor and any potential repercussions.149,150Despite the established role of HTT in HD pathogenesis,151 this analysis also investigated other potential genetic contributors to the development of HD,with additional genes identified(Figure 9).RoleMutations to the HTT gene and resulting mHTT are well-established causes of HD.Mutations may affect synaptic plasticity and reduced levels are observed in HD.ProteinHuntingtinBrain-derived neurotrophic factorGeneHTT 1.0BDNF 0.9Huntingtons diseaseGeneSIRT1 0.8HAP1 0.8PPAR GC1A 0.8CNTF 0.8IGF1 0.8ProteinSirtuin 1Huntingtin associated protein 1Peroxisome proliferator-activated receptor(PPAR)-coactivator 1 (PGC-1)Ciliary neurotrophic factorInsulin-like growth factor 1RoleSirtuin 1 is a type of deacetylase that appears to have a neuroprotective effect in HD.There is evidence that HAP1 protein interacts with mHTT,which impairs cellular trafficking.mHTT has been shown to inhibit PGC-1 expression,which plays a role in mitochondrial energy metabolism.The ciliary neurotrophic factor is a cytokine with possible positive effects on demyelination,which may have a neuroprotective role in HD.The IGF1 protein acts as a mediator of growth hormone,is critical,in somatic growth,and has been associated with declining social cognition in HD.Landscape analysisPublication growth and geographical trendsPatent and journal publications in ALS have steadily increased over the last two decades,with a similar trend for MG which has had a steeper rise since 2018.Patents in HD have also been growing consistently since 2018,and journal publications also displayed an upward trend(Figure 10).All three rare diseases have a greater journal-to-patent publication ratio throughout the window of analysis.Although growth is evident in all three diseases,MG exhibited the fastest growth in the years 20032006,following which ALS took the lead since 2014,with nearly 8%relative growth between 20032023.Number of documents2,0001,5003,0002,5001,0005000202320212019201720152013201120092007200520032004200620082010201220142016201820202022JournalsPatentsYearANumber of documents4008006002000202320212019201720152013201120092007200520032004200620082010201220142016201820202022JournalsPatentsYearCNumber of documents1,0008001,4001,2006002004000202320212019201720152013201120092007200520032004200620082010201220142016201820202022JournalsPatentsYearBFigure 10.Publications for specific rare diseases:(A)ALS,(B)HD and(C)MG.Data includes journal and patent publications sourced from the CAS Content Collection for 20032023.RARE DISEASES REPORT|15Reports of comorbidities were assessed in publications available from the CAS Content Collection.In ALS,hypertension and dyslipidemia are the most commonly reported comorbidities.152 This is notable,as there are ongoing debates about the potential protective role of hypertension and other cardiovascular disorders towards the prognosis and survival of patients with ALS.153,154 As well as cardiovascular-related disease,autoimmune diseases are frequently reported in this patient population,although little is known about the related clinical presentation.155 Finally,despite research in this area,the association of ALS with the risk of cancer(both generally and for specific cancers)is ambiguous and inconsistent.156,157HD has frequently been associated with depression,affecting nearly 43%of all patients,the majority of whom are female.158 Individuals with HD have also been known to have a higher prevalence of comorbidities(musculoskeletal,cardiovascular,and psychiatric)than healthy individuals.159 Conditions more commonly observed in patients with adult-onset HD versus healthy individuals include obsessive-compulsive disorder,psychosis,communication disorders,depression,anxiety,dementia,and others.160Both autoimmune and non-autoimmune comorbidities are observed in patients with MG,161,162 with autoimmune thyroiditis,SLE,and rheumatoid arthritis being the most frequent.163 Comorbidity onset may be related to MG disease onset,as patients with early-onset MG are more likely to develop an autoimmune disease than their late-onset counterparts.163 A known non autoimmune comorbidity of MG is cardiovascular disease.164Using the CAS Content Collection,we examined the co-occurrences of ALS,HD,and MG with other rare and non-rare diseases(Figure 11).ComorbiditiesARare diseasesDiseasesHD:7,897MS:15,081FTD:3,984PSP:3,501CJD:3,457SLE:5,238Spinocerebellar ataxia:2,566MG:1,200ALS:7,024Fredreich ataxia:962Sjgrens syndrome:2,457Scleroderma:2,325Autoimmune thyroiditis:2,292Graves disease:2,075GBS:1,857Ankylosing spondylitis:1,600ALSHDMGAD:23,016Parkinsons disease:22,532Stroke:8,382Neoplasm:6,536Dementia:6,712Epilepsy:5,542Schizophrenia:5,727Rheumatoid arthritis:6,271Depression:2,900Autoimmune disease:3,348Psoriasis:2,295Crohns disease:2,680Type 1 diabetes:2,500Ulcerative colitis:2,411Inflammatory bowel disease:2,176Asthma:2,171CCellsProteinsTDP-43:2,121-Amyloid:2,224Tau proteins:1,756Soluble tumor necrosis factors:1,750Interleukin 6:1,735FUS:654Interleukin 1:972Glial fibrillary acidic protein:894Cytokines:1,464BDNF:1,200TNF:323Type II interferons:664IgG:634Interleukin 2:542Interleukin 10:481Chimeric fusion protein:412Interleukin 4:353ALSHDMGAstrocyte:2,062Microglia:1,767Neuroglia:1,184Stem cells:1,171Induced pluripotent stem cells:840T cells:1,788Macrophage:1,138Oligodendrocytes:488Fibroblasts:809Neural stem cells:797Embryonic stem cell:268B cell:673CD4-positive T cell:468Dendritic cell:341CD8-positive T cell:261NK cells:228p53:305IgG1:446Regulatory T cell:396Lymphocyte:285Mononuclear leukocyte:253BDrugsTypes of therapyALSHDMGAnti-alzheimer:12,376Anti-parkinson:11,068Neuroprotective:8,115Anti-tumor:8,328Anti-inflammatory:7,833Nervous system agents:5,390Anti-diabetic:5,695Anti-convulsants:3,790Anti-psychotics:4,198Anti-depressants:4,144Anti-rheumatic:1,888Immunosuppressants:1,564Anti-asthmatics:1,419Anti-arthritis:1,395Immunomodulators:1,255Anti-psoriatic:850Combination chemotherapy:4,448Gene therapy:1,707Chemotherapy:844Immunotherapy:1,173Radiotherapy:739Cellular therapy:457Hormone replacement therapy:127Physiotherapy:78Photodynamic therapy:53Electrotherapy:51Enzyme replacement therapy:24Psychotherapy:27Phototherapy:50Figure 11.Co-occurrences of ALS,HD,and MG with medical topics such as(A)other rare and non-rare diseases,(B)types of therapy and drugs used to treat symptoms and(C)cells and proteins.Data include patent and journal publications sourced from the CAS Content Collection for the period 20032023 in the field of rare diseases.Types of therapyCombination therapies are the most common type of treatment for all three rare diseases.This is perhaps no surprise given that ALS and HD are multifactorial diseases,meaning single-target drugs are likely to be insufficient when compared with combination drug therapy,which involves multifunctional and biologically diverse agents.165Certain topic combinations are more likely to occur than other combinations in rare disease publications.MG occurs most frequently with combination therapy and secondly with the topic of immunotherapy,whereas ALS and HD often co-occur with gene therapy.Over 50 gene mutations have been identified with a potential causative role in ALS,and efforts are being made to understand the role of these genes in ALS pathogenesis.Due to the potential of gene therapy,suppressing the toxic impact of etiologic genes has been widely investigated.Major strategies include:removal or inhibition of abnormally transcribed ribonucleic acid(RNA)using micro RNA or antisense oligonucleotides(ASOs);degradation of abnormal messenger RNA using RNA interference;a decrease in or inhibition of mutant proteins by using,for example,antibodies against misfolded proteins;and/or deoxyribose nucleic acid(DNA)genome editing with methods such as Clustered Regularly Interspaced Short Palindromic Repeats(CRISPR)or CRISPR/Cas.166 As some studies have shown positive results,ALS clinical trials have incorporated these strategies for C9orf72 and SOD1.166169HD is a good candidate for gene therapy as a monogenic disease with mHTT as a known cause.Genetic therapies may,therefore,help to enhance the function of affected genes throughout the disease course and slow progression.170 Removing,known as“knocking out”the HTT gene has recently been tested,with promising results.171Immunotherapeutic biologics also show some promise as therapeutic agents for MG,including two monoclonal antibodies known as eculizumab and rituximab.Eculizumab has been approved by the US Food and Drug Administration for the treatment of MG that does not respond to other therapies,172 and rituximab is in the advanced stages Promising areas of therapy,drug,and target researchof clinical trials.As new biologics become available,targeted immunotherapies with higher specificity for MG may be developed.Repurposed drugsAs the pharmaceutical development process is both time-consuming and costly,drug repurposing provides a chance to accelerate therapy discovery and development.During drug repurposing,approved agents with established safety profiles,pharmacokinetics,formulations,dosages,and manufacturing procedures are explored as treatment options for new conditions.Within the CAS Content Collection,ALS and HD most frequently co-occurred with mention of anti-Alzheimer and anti-Parkinson drugs.Ropinirole,a treatment for Parkinsons disease,has been found to delay the progression of ALS,173 while allopurinol and carvedilol,treatments for gout and high blood pressure,respectively,show evidence of reducing the risk of developing ALS.174,175 The brain-permeable iron chelator M30 has also been associated with neuroprotection across neurodegenerative diseases.176,177 Other drug classes have been explored for the treatment of ALS,such as anti-cancer,antiretroviral,anti-inflammatory,anticonvulsant,and antiestrogen drugs.178 Antipsychotic therapies have also been studied for use in ALS and HD.178181 Other repurposed drugs used to treat HD include tetrabenazine(an antipsychotic also used for diseases involving abnormal,involuntary movements),179 tiapride,180 olanzapine,182 risperidone,181 and quetiapine.183Contrastingly,MG frequently co-occurred with immunosuppressive and anti-rheumatic drugs within the CAS Content Collection,as they may act by helping to dampen the immune systems response and prevent it from attacking the NMJ.Such therapies include prednisone,azathioprine,cyclophosphamide,methotrexate,tacrolimus,mycophenolate,and mofetil.184187 Two drugs used for treating rheumatoid arthritis,abatacept and rituximab,are also reported to help prevent MG and reduce the risk of deterioration,respectively.187,188RARE DISEASES REPORT|17Small moleculesProtein/peptide sequencesNucleic acids sequencesOthersALS59%9%Relative growth(%)in substancesassociated with journal publicationsPublication year40353025201510502012 2013 2014 2015 2016 2017 2018 2019 2020 2021 2022 2023Small moleculesProtein/peptide sequencesNucleic acids sequencesOthersRelative growth(%)in substancesassociated with patent publicationsPublication year3025201510502012 2013 2014 2015 2016 2017 2018 2019 2020 2021 2022 2023Small moleculesProtein/peptide sequencesNucleic acids sequencesOthersAmyotrophic lateral sclerosis(ALS)AProteinsPatterns of co-occurrences of rare diseases with proteins were also analyzed;for example,transactive response DNA binding protein 43(TDP-43)had the highest co-occurrence with ALS.In 97%of cases,ALS is characterized by loss of TDP-43 from the nucleus and abnormal accumulation in the cytoplasm of affected neurons,189191 and has been related to disease severity and progression.192While huntingtin is the key protein in HD etiology,recent research has revealed the presence of-amyloid deposits and elevated levels of phosphorylated tau in the brains of patients despite these being typically associated with Alzheimers disease.193195 CellsThe CAS Content collection determined astrocytes and microglial cells as the most frequently co-occurring cells associated with ALS and HD publications,whereas T-and B-cells are commonly associated with MG.Astrocytes have roles in ALS and HD throughout the disease course through various mechanisms.196 Microglia are immune cells initially recruited to respond to neuronal injury and promote tissue repair but may become chronically activated in ALS and HD,leading to further motor neuron degeneration.196198 Other cell types including oligodendrocytes and NG2 glia,may also play a part in ALS and HD pathology.16,199,200Substance dataThe CAS Registry contains over 250 million substances of diverse classes.Between 20122023,the number of patent publications related to small molecules,protein/peptide sequences,and nucleic acid sequences increased(Figure 12),with no similar trend observed in journal publications.This is indicative of a commercial interest in developing these therapeutics.For ALS,HD,and MG,small molecules represented the largest fraction of explored substances(Figure 12).RARE DISEASES REPORT|19Small moleculesProtein/peptide sequencesNucleic acids sequencesOthersHD70%7%Relative growth(%)in substancesassociated with journal publicationsPublication year10090807060504030201002012 2013 2014 2015 2016 2017 2018 2019 2020 2021 2022 2023Small moleculesProtein/peptide sequencesNucleic acids sequencesOthersRelative growth(%)in substancesassociated with patent publicationsPublication year353025201510502012013 2014 2015 2016 2017 2018 2019 2020 2021 2022 2023Small moleculesProtein/peptide sequencesNucleic acids sequencesOthersHuntingtons disease(HD)BSmall moleculesProtein/peptide sequencesNucleic acids sequencesOthersMG13g%6%Relative growth(%)in substancesassociated with journal publicationsPublication year35302520151050201 2013 2014 2015 2016 2017 2018 2019 2020 2021 2022 2023Small moleculesOthersRelative growth(%)in substancesassociated with patent publicationsPublication year353025201510502012 2013 2014 2015 2016 2017 2018 2019 2020 2021 2022 2023Small moleculesProtein/peptide sequencesNucleic acids sequencesOthersMyasthenia gravis(MG)CFigure 12.Substance data from the CAS Registry is associated with(A)ALS,(B)HD and(C)MG.Data includes substances associated with patent and journal publications sourced from the CAS Registry and the CAS Content Collection for the period 20122023.Figure 13.Commercial interest in rare diseases(data sourced from PitchBook,an online platform for investment data).Capital invested and deals related to rare diseases(HD,ALS,MG)for the past decade(20122023).Rare diseases such as ALS,HD,and MG have been the subject of intense research and investment over the past decade,as confirmed by data from Pitchbook,an online platform for investment data.However,a mild decline has been observed in the amount of money invested in this field over the last three years(20212023),which could indicate a slight decrease in commercial interest(Figure 13).Between 20132023,the greatest amount of financial investment came from the US,followed by Belgium,the Netherlands,and the UK.The top industry investors in rare diseases are life sciences based,followed by oncology and healthtech.Vaccinex,a US-based biotech company,has the highest number of deals in this field.Its lead drug candidate,pepinemab,has been identified as a potential disease-modifying treatment for HD,Alzheimers,and other neurodegenerative diseases and is currently being investigated in Phase II clinical trials.201,202 Another biotech company,Cytokinetics,is investing in diseases linked to the NMJ,such as ALS.203 These trends confirm a solid commercial interest in rare diseases,including ALS,HD,and MG.What story does the financial data tell?Capital investment(Log scale)Deal count$1.00B$100.00M$100.00B$10.00B$10.00M$1.00M60508070403020100202320222021202020192018201720162015201420132012Capital investmentDeal countPublication yearRARE DISEASES REPORT|21What is in the pipeline?Nearly 250 substances are being researched and in preclinical development for treating ALS,HD,and MG(Tables 1,2,and 3).The vast majority(74%)of these substances are for the treatment of ALS,but therapies for the treatment of HD(18%)and MG(8%)are also in the development pipeline.Small molecule drugs dominate the total number of drug candidates,followed by gene,antibody,RNA,ASO,and stem cell therapies(Figure 14).Rare disease therapeutic drug candidates in commercial preclinical development (Source:https:/ candidatesAmyotrophic lateral sclerosis(ALS)ForalumabMonoclonal antibody,humanizedCD3 antagonistTiziana Life Sciences,UKMecobalaminNeuroprotectantVitamin B12 agonistEisai,JapanMitometinCognition enhancer,neuroprotectantCarnitine palmitoyltransferase 1 inhibitor2N Pharma,DenmarkPimicotinibNeuroprotectantColony stimulating factor 1 receptor antagonist;immuno-oncology therapySperogenix Therapeutics,ChinaRifampicinCognition enhancer,neuroprotectantDNA-directed RNA polymerase inhibitorMedilabo RFP,JapanRiluzoleNeuroprotectantDopamine receptor agonist;glutamate antagonist;voltage-gated sodium channel antagonistBrain Trust Bio,USATable 1.Examples of therapeutic drug candidates in ALS.Huntingtons disease(HD)Debamestrocel Stem cell therapyGlial-cell-derived neurotrophic growth factor agonistBrainStorm Cell Therapeutics,USAHD therapy PROTACHTT inhibitor;E3 ubiquitin ligase stimulant,protein degraderArvinas,USAHD therapy Cognition enhancer,neuroprotectantReverses mitochondrial dysfunctionMitoRx Therapeutics,UKHD therapy RNA interferenceUtilizing a small hairpin RNA or short hairpin RNA for gene expression inhibitionNovartis,Switzerland;Voyager Therapeutics,USATable 2.Examples of therapeutic drug candidates in HD.Myasthenia gravis(MG)Equecabtagene autoleucelCAR T-cell therapyImmuno-oncology therapy;T-cell stimulantNanjing IASO Biotechnology,ChinaPozelimabMonoclonal antibody,humanizedC5a inhibitorRegeneron,USAPrednisoneMusculoskeletal therapyGlucocorticoid agonistSarcomed ABTable 3.Examples of therapeutic drug candidates in MG.RARE DISEASES REPORT|23Small moleculeExosome therapyHuntingtons diseaseAmyotrophic lateral sclerosisMyasthenia gravisGene therapyAntisense oligonucleotide therapyStem cell therapyRNA interferenceAntibody therapyFusion protein therapyProtein degraderPeptide therapyRNA therapyCAR T-cell therapyFigure 14.Preclinical drug therapy candidates and their respective rare disease indications that are currently in the development pipeline.Figure 15.Number of clinical trials by rare disease indications for the years 20032023.As part of the exploration of these new rare disease therapies,over 1 thousand clinical trials have been registered on the US National Institutes of Health clinical trial website over the last 20 years.ALS has the highest number of registered trials,followed by HD and MG(Figure 15).Number of clinical trials806012010040200202320222021202020192018201720162015201420132012201120102009200820072006200520042003Myasthenia gravisHuntingtons diseaseAmyotrophic lateral sclerosisYearNearly half of all rare disease clinical trials are not phased;for those that are,Phase II and Phase III studies are the most common phase of trial for ALS/HD and MG,respectively.While almost half of all trials for these three diseases have a status of“completed”,”recruiting”is the second-most common status,suggesting a continued interest in this space.In ALS,therapy types in clinical development include cell and gene therapies,and small-molecule drugs.RAPA Therapeutics is developing a candidate for autologous T-cell therapy,RAPA-501,to address the limited options for the treatment of neuroinflammation.They are currently recruiting for a Phase II/II clinical trial(NCT04220190)to assess its safety and efficacy in standard-risk patients.204 Additionally,a gene therapy agent,AMT-162 from UniQure Biopharma,will soon be evaluated in patients with SOD1 mutations and rapidly progressive disease(NCT06100276).Rare disease research is also no exception to the application of artificial intelligence(AI),which helped to discover the small molecule FB1006 for the potential treatment of ALS.205 Two more small molecules,ibudilast(CAS RN:50847-11-5)and pridopidine(CAS RN:346688-38-8),discovered by MediciNova and Prilenia respectively,are being investigated as part of the HEALEY ALS Platform trial(NCT04297683).The latter was granted orphan drug designation in 2021 from the US Food and Drug Administration(FDA).206In HD,therapies under development include ASO,cell,and monoclonal antibody therapies,computer-based cognitive stimulation,and small-molecule agents.One such ASO is WVE-003 from Wave Life Sciences,a gene-silencing therapeutic.Further biological-based therapies include NestaCell,a stem cell therapy discovered by Cellavita,which is currently being evaluated in Phase I and Phase II/III clinical trials(NCT02728115 and NCT04219241).A pioneering study by Santa Cre Hospital(Spain)is investigating computer-based cognitive rehabilitation(NCT05769972)in patients with movement disorders.Sage Therapeutics is currently recruiting for Phase II/III clinical trials(NCT05107128,NCT05358821,and NCT05655520)for their small molecule drug SAGE 718(CAS RN:1629853-48-0).SAGE 718 was granted FDA Fast Track designation207 in 2022 and Orphan Drug Designation in 2023,an indication of its promise towards HD.208Therapies under development for MG include biologics such as antigen,cell,and fusion proteins,as well as small molecule-based treatments.COUR Pharmaceutical is developing CNP-106,an antigen-specific therapeutic that prevents immune-mediated NMJ destruction and aims to reprogram the immune system to address the immunological root cause of MG(NCT06106672).An mRNA CAR-T cell therapy currently under investigation is Descartes 08,by Cartesian Therapeutics.Preliminary results for Descartes 08 indicate it is well tolerated,with meaningful improvement in MG disease scorings(NCT04146051),209 and the FDA has granted it Orphan Drug Designation in 2024.210 Another biological therapy is telitacicept,a fusion protein constructed of a domain of an extracellular protein from B cells and immunoglobulin G,from RemeGene.211 RemeGene is currently recruiting for a Phase III clinical trial(NCT05737160).212(Figure 16).Finally,Alexion Pharmaceuticals is currently investigating their candidate ALXN2050(CAS RN:2086178-00-7),a small molecule factor D inhibitor,in a Phase II clinical trial(NCT05218096).Targets B-cell development key molecules:B-cell lymphocyte stimulator and a proliferation-inducing ligandB-cell mediated autoimmune responsesMG-related symptomsTolerable safety profileAnti-AChR antibodiesAChAChRNeuronMuscleFigure 16.Mode of action of telitacicept,a fusion protein-based therapy.Telitacicept interacts with B cells to decrease the resulting mediated immune response and anti-AChR antibodies,and thus,decreases MG symptoms.TelitaciceptRARE DISEASES REPORT|25FDA approved small molecule and biological drugs for rare diseasesStructure/therapy typeCAS Registry NumberMechanism and notesCompany,locationExservan (riluzole)for ALS FFFONNHHS1744-22-5Glutamate signaling blocker/oral film formulationMitsubishi Tanabe Pharma America,USANuedexta(dextromethorphan hydrobromide and quinidien sulfate)for ALSNHHO 2445595-41-3Sigma-1 receptor agonist,NMDA receptor antagonistOtsukac America Pharmaceutical,USAONOHOOOOHSHNHHRadicava (edaravone)for ALSONN89-25-8Free radical scavengerMitsubishi Tanabe Pharma America,USARelyvrio(sodium phenylbutyrate and taurursodiol)for ALSOONa 2436469-04-2Small molecule chaperone and Bax inhibitor/withdrawn 2024Amylyx,USAHHHHHHHHOOOOOSOHHRilutek(riluzole)for ALSFOFFSNNHH1744-22-5Glutamate signaling blocker/oral tablet formulationSanofi,USACurrently,there are no cures for ALS,HD,or MG,but there are treatments to slow disease progression and treat symptoms.There are 13 drugs currently approved by the FDA for treating these rare diseases,of which three have multiple approved formulations(Table 4).Several of the approved drugs for ALS and HD are small molecules.In contrast,biologic therapies such as monoclonal antibodies,antibody fragments,and peptide therapy make up most of the approved treatments for MG.Patents pertaining to ALS,HD,and MG were identified from the CAS Content Collection(Table 5).What could the future hold?FDA approved small molecule and biological drugs for rare diseasesStructure/therapy typeCAS Registry NumberMechanism and notesCompany,locationTiglutik(riluzole)for ALSFOFFSNNHH1744-22-5Glutamate signaling blocker/oral thickened suspensionITF Pharma,USAAustedo(deutetrabenazine)for HDNOOHDDDDDDOO1392826-25-3 VMAT2 inhibitorTeva Pharmaceutical,IsraelAustedo XR(deutetrabenazine)for HDOOHDDDDDDOO1392826-25-3VMAT2 inhibitor/extended-release formulationTeva Pharmaceutical,IsraelIngrezza(valbenazine)for HDOOHHHNNOO1025504-45-3VMAT2 inhibitorNeurocrine Biosciences,USAXenazine(tetrabenazine)for HDOONO58-46-8VMAT2 inhibitorLundbeck Pharmaceuticals,DenmarkRARE DISEASES REPORT|27FDA approved small molecule and biological drugs for rare diseasesStructure/therapy typeCAS Registry NumberMechanism and notesCompany,locationQalsody(tofersen)for ALSGene therapy2088232-70-4Targets SOD1 mRNA to reduce SOD1 protein productionBiogen,USARystiggo(rozanolixizumab-noli)for MGMonoclonal antibody 1584645-37-3 Targets FcRn to prevent IgG recyclingUCB,USASoliris (eculizumab)for MGMonoclonal antibody 219685-50-4Complement factor C5 inhibitorAlexion,UKUltomiris(ravulizumab-cwvz)for MGMonoclonal antibody 1803171-55-2Complement factor C5 inhibitorAlexion,UKVyvgart(efgartigimod alfa-fcab)for MGAntibody fragment1821402-21-4Fc receptor blocker,intravenous injection Argenx,NetherlandsVyvgart Hytrulo(efgartigimod alfa and hyaluronidase-qvfc)for MGAntibody fragment 1821402-21-4Fc receptor blocker,subcutaneous injectionArgenx,NetherlandsZilbrysq (zilucoplan)for MGPeptide therapy1841136-73-9Complement factor C5 inhibitorUCB,USATable 4.FDA-approved drugs for the treatment of specified rare diseases(Source:The CAS Content Collection).Each drug is listed with the disease indication,therapy type,CAS identifier,mechanism,company,location,and any extra information.Tile colors are defined by therapy type:small molecule(yellow),gene therapy(orange),monoclonal antibody(blue),antibody fragment(light green),and peptide therapy(purple).Patent numberYearPatent assignee,locationDescriptionALSUS202000027232020Deutsches Krebsforschungszentrum,GermanyEarly markers for development:nucleotide sequences called Multiple Sclerosis Brain Isolate(MSBI),as well as probes,primers,and antibodies against polypeptides encoded by MSBI sequencesWO20200100492020The General Hospital Corporation,AZTherapies,Inc.,United StatesTreatment:composition of micronized cromolyn sodium,-lactose,and salt of fatty acid(preferably magnesium stearate)CN1170501342023Shanghai Institute of Organic Chemistry,Chinese Academy of Sciences,ChinaTreatment and prevention:novel oleanamide derivative for activating a KEAP/NRF2/ARE signaling pathwayEP4255406A12020Massey Ventures Ltd.,United StatesTreatment:(2S)-2-Aminopentanethioic S-acid or a pharmaceutically acceptable saltWO20221387072022Eisai R&D Management Co.,Ltd.,JapanTreatment:pharmaceutical composition of anti-EphA4 antibodies that promote the cleavage of EphA4HDWO20230996482023AstraZeneca AB,SwedenTreatment:pyrazolo-and triazolo-azinone compounds that inhibit receptor-interacting protein kinase 1US20240076310A12023Sage Therapeutics Inc.,United StatesTreatment:neuroactive steroids(or their combinations),that target GABA receptor complex(GRC)WO2022235329A12022University of South Carolina,United StatesTreatment:hydrophilic nanogels based on polyethylene glycol(PEG)copolymers to encapsulate an antibody for delivery to the brain.May include ligands for blood-brain barrier receptorsWO2022132894A12022Rush University Medical Center,United StatesTreatment:pharmaceutical composition of glycerol tribenzoate and glycerol phenylbutyrateWO2020068913A12020Chase Therapeutics Corporation,United StatesTreatment:combination 5HT3-antagonist and/or a NK-l antagonist with 6-propylamino-4,5,6,7-tetrahydro-l,3-benzothiazole-2-amine and with fluoxetine,zonisamide,or a statinMGWO2020106724A12020Alexion Pharmaceuticals,Inc.,United StatesTreatment(pediatric population):formulation that binds complement component 5WO2020014072A12020GT Biopharma,Inc.,United StatesTreatment:NK1-antagonist(e.g.,aprepitant)in combination with neostigmine.WO2023236967A12023RemeGene Co.,Ltd.,ChinaTreatment:development of the drug,a dosage regimen,an administration interval,and a mode for treating MG using TACI-Fc fusion protein,showing good clinical efficacy and safetyWO2020086506A12020Ra Pharmaceuticals,Inc.,United StatesTreatment:methods of treating MG with zilucoplan(complement inhibitor),including devices and kits available for administrationCN112048565A2020Shijiazhuang Peoples Hospital,ChinaDiagnosis:microbial marker(comprising Megamonas hypermegale and/or Fusobacterium mortiferum)with good specificity and high sensitivityTable 5.List of notable patents pertaining to ALS,HD,and MG identified from the CAS Content Collection.SummaryCurrent landscape,challenges,and possible future perspectivesIn the vast landscape of medical conditions,rare diseases occupy a unique and often overlooked niche.Despite their low prevalence,these disorders collectively affect millions worldwide.2,3 Each rare disease represents a unique manifestation of genetic,environmental,and/or infectious factors,often with distinct clinical presentations.This variation means initial diagnosis and ongoing treatment may be challenging.Research into rare diseases has uncovered many novel disease mechanisms,with advances in genomics,molecular biology,and precision medicine holding promise for improved diagnosis and targeted therapies.Insights gained from studying underlying mechanisms of rare diseases have broad implications for understanding more prevalent disorders,such as progerin in HGPS and possible links to cardiovascular disease.Future research into rare diseases will hopefully continue to identify druggable targets and novel therapeutic strategies.Despite these advances,significant roadblocks remain to progress in rare disease research and care.The small size of patient populations limits the potential for robust clinical trials,leading to fewer evidence-based treatment options.Even once research is underway,the confidentiality associated with scientific research(including rare diseases)can impede collaboration and knowledge sharing among the scientific community.Historically,there has been a lack of commercial incentives for developing treatments for rare diseases,accounting for a lack of interest from the pharmaceutical industry.However,new incentives are beginning to change this.Collaborative and regulatory incentives and patient-centered trial designs are accelerating the translation of scientific discoveries into clinically meaningful interventions.Furthermore,sharing data and resources through collaborative platforms and consortia has become a cornerstone of rare disease research.Continued investment in rare disease research,infrastructure,and policy initiatives is critical for overcoming existing challenges and maximizing the potential of scientific advancements to improve the lives of people living with rare diseases.RARE DISEASES REPORT|291.Abozaid,G.M.;Kerr,K.;McKnight,A.;Al-Omar,H.A.Criteria to Define Rare Diseases and Orphan Drugs:A Systematic Review Protocol.BMJ Open 2022,12(7),e062126.https:/doi.org/10.1136/bmjopen-2022-062126.2.Nguengang Wakap,S.;Lambert,D.M.;Olry,A.;Rodwell,C.;Gueydan,C.;Lanneau,V.;Murphy,D.;Le 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The Impact of Chronic Underfunding on Americas Public Health System:TRENDS,RISKS,AND RECOMMENDATIONSAUGUST 20242024ISSUE REPORT2TFAH tfah.orgTFAH BOARD OF DIRECTORSStephanie K.Mayfield Gibson,M.D.,FCAPChair of the TFAH Board of DirectorsFormer DirectorU.S.COVID-19 Response Initiative Resolve to Save LivesDavid Fleming,M.D.Vice Chair of the TFAH Board of DirectorsClinical Associate ProfessorUniversity of Washington School of Public HealthRobert T.Harris,M.D.,FACPTreasurer of the TFAH Board of DirectorsSenior Medical DirectorGeneral Dynamics Information Technology Theodore Spencer,M.J.Secretary of the TFAH Board of DirectorsCo-FounderTrust for Americas HealthCynthia M.Harris,Ph.D.,DABTAssociate Dean for Public Health and Director and ProfessorInstitute of Public Health Florida A&M UniversityDavid Lakey,M.D.Chief Medical Officer and Vice Chancellor for Health Affairs The University of Texas SystemOctavio Martinez Jr.,M.D.,MPH,MBA,FAPAExecutive Director Hogg Foundation for Mental Health The University of Texas at Austin John A.Rich,M.D.,MPHDirectorRUSH BMO Institute for Health EquityRush University System for HealthEduardo J.Sanchez,M.D.,MPHChief Medical Officer for Prevention American Heart Association Umair A.Shah,M.D.,MPHSecretary of HealthWashington StateVince Ventimiglia,J.D.PresidentCollaborative Advocates Leavitt PartnersTRUST FOR AMERICAS HEALTH LEADERSHIP STAFFJ.Nadine Gracia,M.D.,MSCEPresident and CEOTekisha Dwan Everette,Ph.D.,MPA,MPH,CPHExecutive Vice PresidentStacy MolanderChief Operating OfficerAcknowledgementsTrust for Americas Health(TFAH)is a nonprofit,nonpartisan public health policy,research,and advocacy organization that promotes optimal health for every person and community,and works to make the prevention of illness and injury a national priority.Any opinions,findings,conclusions,or recommendations expressed in this report are those of the authors and do not necessarily reflect the views of TFAHs funders.Learn more about TFAH at www.tfah.org.REPORT CONTRIBUTORSKevin McIntyreGovernment Relations ManagerBrandon Reavis,J.D.Senior Government Relations ManagerCecelia Thomas,J.D.*Senior Government Relations ManagerMadison WestGovernment Relations ManagerREPORT AUTHORSMatt McKillop,MPPSenior Health Policy Researcher and AnalystDara Alpert Lieberman,MPPDirector of Government RelationsEXTERNAL REVIEWERThis report has benefited from the insights and expertise of the following external reviewer.Their review does not necessarily constitute an endorsement of the reports findings or recommendations by the reviewer or their organization.TFAH thanks the reviewer for their time and assistance.Erin Will MortonExecutive DirectorCoalition for Health Funding*Ms.Thomas was a member of the TFAH staff through July 2024.3TABLE OF CONTENTSAUGUST 20243Table of ContentsACKNOWLEDGEMENTS.2EXECUTIVE SUMMARY.4SECTION 1:PUBLIC HEALTH FUNDING TRENDS.10Federal Funding.10State and Local Funding.29SECTION 2:RECOMMENDED POLICY ACTIONS.34Modernize and Strengthen Public Health in Every Community.34Invest in the Nations Health Security.35Address Health Disparities and Root Causes of Disease.36Promote Health and Prevent Chronic Diseases Across the Lifespan.37Invest in Primary Prevention of Behavioral Health Concerns and Deaths of Despair.38Prepare for and Prevent the Health Impacts of Environmental Threats.39CLOSING THOUGHTS.41ENDNOTES.42table of contents4EXECUTIVE SUMMARYAUGUST 2024Executive SummaryThe U.S.public health system is a critical driver of progress in improving the nations health,from reducing infant mortality and controlling infectious diseases to increasing life expectancy and promoting healthier lifestyles.However,for decades,chronic underfunding has limited the systems capacity to fully address the complex health challenges facing the nation today.Despite recent progress in improving data and disease detection systems and bolstering the public health workforce through temporary funding measuressuch as those implemented during the COVID-19 pandemicincreased,sustained,and flexible investment is urgently needed to modernize public health infrastructure,strengthen emergency preparedness,promote health equity,and prevent the growing burden of chronic diseases and mental health conditions.By investing in public health,policymakers can build on past successes,ensure the systems continued effectiveness,and create a healthier,more resilient future for all U.S.residents.Core federal public health funding,primarily allocated through the Centers for Disease Control and Prevention(CDC),has remained relatively flat over the past decade when adjusted for inflation.In addition,the siloed,disease-specific nature of public health funding streams has enabled little investment in cross-cutting capabilities.This has significantly limited CDCs ability to support critical programs and initiatives at the state,local,tribal,and territorial levels.Key areas impacted by insufficient funding include chronic disease prevention,infectious disease control,environmental health,and public health emergency preparedness.Many evidence-based programs have yet to reach all 50 states and U.S.territories due to resource constraints,hindering efforts to address the leading causes of death and drivers of healthcare costs.The Prevention and Public Health Fund,established by the Affordable Care Act to provide a dedicated funding stream for prevention and public health activities,has been repeatedly cut and diverted to other purposes.This fund has supported crucial investments in every state,such as expanding vaccine access,building laboratory capacity,and preventing chronic diseases.Restoring and protecting this fund is essential for supporting evidence-based interventions that promote health,reduce health disparities,and control healthcare costs.State and local health departments face significant challenges in maintaining and strengthening public health infrastructure due to chronic underfunding.Workforce shortages,outdated technology and data systems,and limited surge capacity during crises are among the major issues confronting these agencies.The COVID-19 pandemic exacerbated these challenges,leading to high levels of burnout,turnover,and even threats and harassment against public health officials.Recent initiatives,such as CDCs Public Health Data Modernization and Public Health Infrastructure Grant program,represent important steps forward in addressing these infrastructure gaps.These efforts aim to upgrade public health data and technology systems,enhance data analytics and visualization capabilities,and strengthen the foundational capabilities of health departments.However,these initiatives require sustained funding and long-term commitment to fully realize their potential in improving public health decision-making,outcomes,and equity.4executive summary5 TFAH tfah.orgFor too long,people have taken public health for granted.At its core,public health ensures our air and water are clean;our roads are safe;our schools,businesses,and restaurants are hygienic;and harmful substances and infectious diseases are kept out of communities.Public health enables us to be physically active,eat nutritious food,and prevent substance misuse.Everyone wants their community to be strong,healthy,and safethis is what public health does for us each and every day.For all of these reasons,increased and sustained funding for the nations public health system is critical.Anand Parekh,M.D.Chief Medical Advisor Bipartisan Policy CenterCOMPREHENSIVE AND FLEXIBLE INVESTMENT:ESSENTIAL FOR EFFECTIVE PUBLIC HEALTH PREVENTION AND RESPONSE Chronic diseases,which are largely preventable,are a major driver of the nations$4.5 trillion annual healthcare expenditure.1 They not only escalate healthcare costs but also impact economic growth,with conditions like heart disease and stroke costing more than$100 billion in lost job productivity annually,according to the American Heart Association.2Investment in a broad range of prevention activities is critical for maintaining public health,including community preparedness and resilience.This includes programs across CDC,other federal agencies,and at the state,local,tribal,and territorial levels.With six in 10 U.S.adults living with a chronic disease3 and the increasing frequency and severity of public health emergencies,such as extreme weather events and infectious disease outbreaks,the connection between a populations underlying health and a communitys resilience during and after a public health emergency becomes evident.People with chronic diseases or behavioral health conditions are at heightened risk of severe illness,complications,or mortality during infectious disease outbreaks4 or natural disasters.5 This emphasizes the importance of preventing chronic diseases and improving the overall health of communities to mitigate severe health impacts during emergencies.An effective public health response requires experts from various disciplines,including maternal health,childrens health,older adult health,behavioral health,environmental health,and health equity.Investing in programs that address health disparities and prevent chronic disease,alongside flexible funding streams that enable health departments to meet the specific needs of the communities they serve,forms a critical foundation for the nations emergency preparedness and overall well-being.6TFAH tfah.orgTo improve the health and well-being of all U.S.residents,reduce healthcare costs and health disparities,and protect the nations health security,this report recommends several key policy actions:1.Strengthen the nations public health infrastructure:Increase and sustain funding to modernize public health data systems,support local and state public health laboratories and epidemiology,and grow and diversify the public health workforce.2.Enhance health security:Boost funding for programs that fortify defenses against a wide range of threats,from infectious diseases to weather-related events.Support vaccine infrastructure and ensure healthcare system readiness.3.Address health inequities and the social determinants of health:Invest in programs and policies that target the root causes of health disparities,including the social and structural drivers of health.4.Promote health and prevent chronic disease across the lifespan:Allocate resources for evidence-based interventions that promote healthy behaviors and prevent chronic diseases at every stage of life.5.Prioritize primary prevention of behavioral health concerns and deaths of despair:Invest in comprehensive suicide and substance use disorder prevention programs,emphasizing early interventions and timely identification of individuals at risk.6.Prepare for and mitigate the health impacts of climate change and environmental threats:Increase funding to address the health consequences of climate change,extreme weather events,and other environmental health hazards.TABLE 1:Summary of Public Health Funding RecommendationsThis chart summarizes current funding(FY 2024)and TFAH-recommended funding levels for FY 2025 for CDC and the Administration for Strategic Preparedness and Response(ASPR)programs associated with the reports recommendations.Program/DivisionFY 2024FY 2025(TFAH recommendation)CDCPublic Health Infrastructure and Capacity$350 million$1 billion Public Health Data Modernization$175 million$340 million Public Health Emergency Preparedness Cooperative Agreement$735 million$1 billion Immunization Program$682 million$1.1 billion Climate and Health Program$10 million$110 million National Environmental Public Health Tracking Network$34 million$65 million Social Determinants of Health$6 million$100 million Division of Nutrition,Physical Activity,and Obesity$58 million$130 million Racial and Ethnic Approaches to Community Health and Healthy Tribes$69 million$103 million Division of Adolescent and School Health$57 million$100 million Suicide Prevention$30 million$80 million Adverse Childhood Experiences$9 million$33 million Age-Friendly Public Health SystemsN/A$50 million Total CDC Program Level$9.2 billion$11.5 billion Agency for Toxic Substances and Disease Registry$82 million$100 million ASPRHealth Care Readiness&Recovery$305 million$500 million 7 TFAH tfah.orgImplementing these recommendations will require a paradigm shift in public health financing,moving away from reactive,crisis-driven funding and toward sustained,predictable investments in core infrastructure,programs,and capabilities.This shift is essential for building a public health system that is agile,resilient,and capable of addressing both ongoing and emerging health threats.Moreover,rebuilding public trust and support for public health institutions and expertise will be critical for the success of these efforts.The politicization of public health measures during the COVID-19 pandemic,coupled with the spread of misinformation and disinformation,has led to increased skepticism and hostility toward public health officials and agencies.Addressing this erosion of trust will require investment in public health communications capacities,transparent and inclusive decision-making processes,effective communication with diverse audiences,and a commitment to advancing health equity.By prioritizing stable,adequate funding for public health and engaging in meaningful partnerships with communities,policymakers can help build a public health system that is better equipped to promote health,prevent disease,and protect the well-being of all people in the United States.Investing in public health is not only a moral imperative but also a sound economic strategy,as it can reduce healthcare costs,increase productivity,and strengthen the nations resilience to future health crises.As the nation continues to grapple with the far-reaching consequences of the COVID-19 pandemic and faces a growing array of complex health challenges,the time for bold action and transformative change in public health is now.By heeding the recommendations outlined in this report and committing to a vision of a robust,equitable,and adequately resourced public health system,the United States can chart a path toward a healthier,more prosperous future for all its residents.8TFAH tfah.orgPROGRESS IN STRENGTHENING PUBLIC HEALTH INFRASTRUCTURE:SOME ADVANCES MADE,MORE INVESTMENT NEEDEDA modern and robust infrastructure,including data and disease surveillance systems and a highly skilled workforce,is the underpinning of an effective public health system.Progress toward that goal has been made,but decades of underfunding have left too many health departments dependent on antiquated systems and insufficient staffing levels.Additional,sustained,and flexible investment is urgently needed.Government investment in public health infrastructure typically follows a boom-and-bust cycle,funneling money into the public health system in response to emergencies but failing to do so on a consistent basis.Additionally,this emergency funding is often congressionally mandated to focus on specific response actions,rather than investing in the foundations of effective public health systems.Recent federal actions that invest in programs to protect public health include the 2021 Infrastructure Investment and Jobs Act(also known as the Bipartisan Infrastructure Law,or“BIL”)and the 2022 Inflation Reduction Act(IRA).The Bipartisan Infrastructure Law provides hundreds of billions of dollars in new and critical funding sources to strengthen transportation infrastructure,including public transit,and to support programs aimed at reducing greenhouse gas emissions.It also supports programs to improve access to clean drinking water,replace lead service pipes,expand high-speed internet access,invest in clean energy and environmental remediation,and create communities that are more climate resilient.6The Inflation Reduction Act includes a number of actions to make healthcare more accessible and more affordable,including giving Medicare the authority to negotiate the price of some prescription drugs and creating an annual$2,000 cap on out-of-pocket prescription costs for Part D enrollees starting in 2025.The act also extended subsidies to lower Affordable Care Act premiums,which were expanded under the American Rescue Plan Act and were due to expire at the end of 2022,through the end of 2025.7Sustained Progress Requires Increased Investment CDC is the primary driver of public health infrastructure funding to states,local,tribal,and territorial health departments.By allocating funds across these different levels of government,CDC aims to ensure that public health systems are well-equipped to manage both routine needs and emergent health crises.These investments help to build and maintain a skilled public health workforce,enhance data collection and analysis capabilities,and strengthen the overall resilience of public health systems against future public health threats.Through these strategic allocations,CDC not only bolsters public health capacities locally but also enhances the nations ability to respond to public health challenges effectively and efficiently.Through its various grant programs and cooperative agreements,CDC provides critical financial support to strengthen the foundation of the nations public health system.One such initiative is the Public Health Infrastructure Grant program,launched in 2022,which aims to enhance key capabilities across three crucial areas:workforce development,9 TFAH tfah.orgfoundational capabilities,and data modernization.8,9 This program equips health departments of all sizes with the resources needed to attract,train,and retain skilled professionals;improve essential public health services;and upgrade data systems for better decision-making and response.By investing in these core components of public health infrastructure,CDC helps to build a more robust,resilient,and responsive network of public health agencies nationwide,ultimately improving the health and well-being of communities across the United States.Through its Public Health Infrastructure Center and the Public Health Infrastructure Grant program,CDC awards 70 percent of the Public Health Infrastructure and Capacity appropriation to health departments to help them build their foundational capabilities,including information technology,communications,performance management,and accreditation.In fiscal year(FY)2024,all 50 states,the District of Columbia,47 large cities or counties,and eight territories or freely associated states received a combined total of$245 million to support their unique infrastructure needs.Sixty-four recipients also received$80 million in data modernization funding in FY 2024.As of January 2024,CDC had awarded a total of$4.35 billion in grants,with$4.01 billion going to health departments and$340 million to national public health organizations for training,technical assistance,evaluation,and communications support.CDC expects to award approximately$5 billion in public health infrastructure grants over the five-year program window,through November 2027.10 Public health infrastructure funding now appears to be entering the austere phase of a boom-and-bust cycle.COVID-19 response funds were a significant but short-term source of public health investment over the past four years,including funding through the Coronavirus Aid,Relief,and Economic Security(CARES)Act of 2020 and the American Rescue Plan Act(ARPA)of 2021,which provided the largest single investment in public health infrastructure in recent years.However,such funding was temporary and has now been largely obligated,or,in some cases,rescinded by Congress.11 The result is a serious financial cliff for CDC and many health departments,where federal assistance for specific programs or personnel is no longer available and program cuts have been made or are on the horizon.While the Fiscal Responsibility Act(FRA),adopted in June 2023,was critically important because it prevented the United States from defaulting on its debt,it had two significant impacts on federal public health agencies.First,it rescinded pandemic response appropriations and funding from the American Rescue Plan Act that had been allocated to CDC,the Administration for Strategic Preparedness and Response,the Health Resources and Services Administration,the Defense Production Act Medical Supplies Enhancement,the National Institutes of Health,and the Food and Drug Administration.In total,the FRA rescinded approximately$13.2 billion in emergency response funding,according to estimates from the Congressional Budget Office.Second,the FRA introduced new discretionary spending limits for two years,which affect the amount of appropriations made available for public health through regular appropriations.These funding cuts underscore the ongoing challenges faced by public health agencies in maintaining essential services and preparedness in the face of variable funding streams and competing priorities.12101SECTION 1:Public Health Funding Trends10AUGUST 2024Public Health Funding TrendsPublic health in the United States is a collaborative effort involving federal,state,local,tribal,and territorial agencies working together with the healthcare sector,community-based organizations,businesses,and other sectors to promote and protect the health of communities nationwide.Funding for public health programs and services flows from various sources,with the federal government providing significant support through agencies such as the Centers for Disease Control and Prevention(CDC).CDC awards more than 80 percent of its funds to states,tribes,territories,and local health departments,among other external partners,to support a wide array of programs.Other federal agencies,such as the Health Resources and Services Administration(HRSA),the Substance Abuse and Mental Health Services Administration(SAMHSA),and departments outside of the U.S.Department of Health and Human Services(HHS),such as the U.S.Department of Agriculture(USDA),are also a part of the public health funding landscape.However,federal funding tells only part of the story.State and local funding for public health plays an important role in enabling health departments to meet the unique needs of the communities they serve.When state and local funding is robust and consistent,health departments can maintain vital services,retain skilled staff,and nimbly respond to emerging health threats.Conversely,when state and local budgets are strained,it can lead to program reductions,staffing shortages,and diminished capacityleaving communities more vulnerable.Throughout the COVID-19 pandemic,the critical importance of sustained,stable funding for public health preparedness and infrastructure was starkly illuminated.Chronic underfunding at all levels has contributed to long-standing challenges like workforce shortages,outdated data systems,and limited surge capacity during emergencies.Moving forward,strengthening the public health system will require strategic investments and long-term commitments from federal,state,and local partners.The following sections take a closer look at public health funding trends at the federal and state levels,including allocations to CDC and its key initiatives,the role of the Prevention and Public Health Fund,and the funding landscape for state and local health departments.By examining these funding streams and the programs they support,policymakers can better understand the current state of public health financing and identify opportunities to build a more resilient,equitable public health system for the future.Federal public health fundingThe federal government allocates investments in public health programs across numerous agencies and initiatives.These programs,which represent core elements of the nations public health system,aim to enhance health,prevent diseases and injuries,and prepare for potential disasters and major health emergencies.The majority of these funds are awarded to states,tribal nations,territories,and local health departments through CDC,which supports a wide range of activities,including immunization programs,infectious disease control,chronic disease prevention,environmental health,and public health emergency preparedness.In addition to CDC,other agencies within HHS play critical roles in funding public health programs.For example,HRSA supports community health centers,maternal and child health programs,and health workforce development,while SAMHSA funds mental health and substance use prevention and treatment services.The Indian Health Service 11 TFAH tfah.orgprovides healthcare services and public health programs for American Indian and Alaska Native populations.Beyond HHS,several other federal departments contribute to public health funding.The USDA administers nutrition assistance programs,such as the Supplemental Nutrition Assistance Program(SNAP)and the Special Supplemental Nutrition Program for Women,Infants,and Children(WIC),which play a vital role in promoting food security and healthy eating.The U.S.Department of Housing and Urban Development(HUD)supports programs that address the social determinants of health,such as housing stability and lead abatement.The U.S.Department of Transportation funds initiatives to improve road safety and promote active transportation,while the U.S.Environmental Protection Agency(EPA)works to ensure clean air,water,and land,which are essential for public health.These diverse federal funding streams reflect the complex and multifaceted nature of public health,which requires collaboration across sectors and levels of government.By investing in a broad range of programs and initiatives,the federal government aims to create the conditions for optimal health and well-being for all U.S.residents,particularly those in underserved and marginalized communities.However,ensuring adequate and sustained funding for these critical public health programs remains an ongoing challenge,particularly in light of competing budget priorities and the boom-and-bust cycle of crisis-driven investments.Stable,predictable funding is essential for building and maintaining a robust public health infrastructure that can effectively prevent disease,promote health equity,and protect the nations health over the long term.SAFEGUARDING PUBLIC HEALTH:THE CRITICAL ROLE OF THE PREVENTION FUNDAs a nation,the United States spent$4.5 trillion on health in 2022,but only 4.7 percent of that spending funded public health and prevention initiatives to promote health and prevent illness.13 In this era of rising rates of chronic disease and increasing healthcare costs,investments in prevention are critical.The Prevention and Public Health Fund(Prevention Fund)is one of the nations most significant sustained investments in disease prevention.Since its inception in 2010 as a part of the Affordable Care Act,states and territories have received over$12.3 billion from the Prevention Fund to address public health priorities,including immunizations,epidemiology,and laboratory capacity.14 The Prevention Fund also supports the Preventive Health and Health Services Block Grant,which allows states to address their most relevant health concerns and backfill underfunded priorities.The Prevention Fund represented 13 percent of CDCs budget in FY 2024.15 While the majority of its investments fund CDC initiatives,the Prevention Fund also supports programs at the Administration for Community Living and SAMHSA.The Administration for Community Living receives Prevention Fund support for programs related to Alzheimers disease prevention,falls prevention,and chronic disease self-management.SAMHSA uses Prevention Fund resources to support suicide prevention initiatives.CDCs Tips from Former Smokers campaign is supported by the Prevention Fund.In 2024,the campaign released a new set of advertisements featuring individuals sharing their stories about how cigarette smoking and smoking-related diseases have negatively impacted their lives.It is estimated that between 2012 and 2018,this campaign helped prevent about 129,000 early deaths and saved roughly$7.3 billion in smoking-related healthcare costs.16The Prevention Fund also works to prevent chronic disease.All 50 states receive funding for heart disease and chronic disease prevention.Another notable success is the Diabetes Prevention Program,which saves an estimated$1,146 per participant in diabetes-related healthcare costs.17Unfortunately,the Prevention Funds history has been limited by its use as a funding offset.As first established by the Affordable Care Act,the Prevention Fund should have risen to$2 billion by FY 2015.After multiple cuts,the Prevention Fund will not reach that number until FY 2030,a full 15 years later than intended.In total,the Prevention Fund has been cut by$12.95 billion between FY 20132029(see pages 16-17).Threats to the Prevention Fund are still active.Legislation recently passed by the House of Representatives would cut an additional$1.19 billion from the Prevention Fund over FY 20242029.Over 100 organizations joined a recent sign-on letter to U.S.House of Representatives leadership opposing these cuts.18This content is based on work originally published as a Coalition for Health Funding blog post in April 2024,authored by Kevin McIntyre,TFAH Government Relations Manager.12TFAH tfah.orgCDC funding CDC stands as the nations foremost public health agency.Its mission encompasses safeguarding U.S.residents from disease outbreaks,disasters,and contaminated food and water,as well as preventing and mitigating the leading causes of injury and death.To facilitate the achievement of its objectives,CDC collaborates with states,localities,tribes,and territories,as well as researchers,nonprofits,and other entities,in addressing threats and enhancing health within communities.In fact,CDC channels a significant portion of its program funding to these jurisdictions,recognizing the critical role they play in implementing public health programs and services.However,the agencys budget has not kept pace with the nations growing public health needs and emerging threats,including the rise in chronic diseases,weather-related emergencies,substance use disorders,and suicide.Years of eroding resources for public health emergency preparedness contributed to the countrys flat-footed response to the COVID-19 pandemic.19 Funding for effective community prevention programs,such as obesity prevention,is insufficient to support every state adequately.20 Despite the rapid growth in the older adult population,21 funding to support the overall health and well-being of older adults remains scarce.Moreover,CDC,and by extension its state,local,tribal,and territorial partners,lack the flexible funding needed to respond to the underlying drivers of poor health and to adequately grow and support the cross-cutting,foundational capabilities that bolster comprehensive public health systems at all levels of government.22The FY 2024 budget for CDC is$9.2 billion,reflecting a$4.5 million(less than 1 percent)increase from FY 2023 funding,or a 3 percent decrease in inflation-adjusted dollars.23 Looking further back,CDCs budget increased by just 4 percent over the past decade(FY 20152024),after adjusting for inflation.(See Figure 1.)This modest growth has not been commensurate with the increasing demands placed on the public health system,the rising costs of public health interventions,and the need to modernize public health infrastructure and data systems.The chronic underfunding of CDC and the public health system has severe consequences for the nations health and preparedness.It limits the ability of public health agencies to invest in disease surveillance,laboratory capacity,workforce development,and innovative programs to address the root causes of poor health.It also hinders efforts to reduce health disparities and promote health equity,as underserved communities are often the most impacted by public health budget cuts and resource limitations.To build a more resilient and equitable public health system,it is essential to provide CDC and its partners with sustained,predictable funding that allows for long-term planning and investment in core capabilities.This includes not only increasing funding for specific programs and initiatives but also providing more flexible funding streams that enable public health agencies to respond to emerging threats,address the social determinants of health,and support cross-cutting functions such as data modernization and community engagement.By prioritizing stable,adequate funding for CDC and the broader public health system,policymakers can help ensure that all communities have access to the resources and services they need to protect and promote health.Note:To accurately compare funding levels from FY 20152018 with those from FY 2019 onward,it is necessary to consider the transfer of funding for the Strategic National Stockpile from CDC to the Office of the Assistant Secretary for Preparedness and Response in FY 2019.Funding levels are presented in FY 2024 dollars.TFAH has adjusted the data for inflation using the Bureau of Economic Analysiss Gross Domestic Product price index.Source:CDC Annual Operating Plans24$0$1$2$3$4$5$6$7$8$9$10$11$12FY 2024FY 2023FY 2022FY 2021FY 2020FY 2019FY 2018FY 2017FY 2016FY 2015 Prevention and Public Health Fund Other program funding Total program fundingFunding,FY 2024 dollars(billions)Fiscal Year$7.66$1.13$8.13$1.13$7.80$1.11$9.09$0.98$7.74$0.96$8.33$1.01$8.05$8.19$8.48$8.79$9.26$8.92$10.07$8.71$9.34$9.04$9.18$9.40$0.99$0.99$0.93$7.98$9.17$1.19FIGURE 1:CDC Program Funding,Adjusted for Inflation,FY 2015202413 TFAH tfah.orgCDCs FY 2024 Operating Plan outlines the agencys funding allocations for the fiscal year.It is largely based on the congressionally mandated budget and reflects the priorities set by Congress and the President,with minor adjustments to address specific public health needs.25 The total CDC program level budget for FY 2024 is$9.2 billion,which includes budget authority,Prevention and Public Health Fund(Prevention Fund)transfers,and Public Health Service(PHS)evaluation transfers.The FY 2024 plan maintains stable funding for public health functions such as HIV/AIDS,viral hepatitis,sexually transmitted infections,and tuberculosis prevention,as well as steady support for global health programs.There was a slight increase in funding($9.5 million,1 percent)for emerging and zoonotic infectious diseases.Funding for injury prevention and control remained unchanged,maintaining but not growing support for various programs,including opioid overdose prevention,domestic violence,and firearm injury prevention research.Similarly,occupational safety and health funding remained stable,continuing support for research and health programs for workers.Public health scientific services saw a decrease in budget authority funding but an increase in PHS evaluation transfer,suggesting a shift in how funds are categorized rather than a reduction in services.The PHS evaluation transfer is a mechanism that allows a portion of funds appropriated to certain programs within HHS to be used for evaluation purposes.26 The use of it allows CDC to conduct critical evaluations and assessments of its programs and activities,without relying solely on its regular budget authority or other funding sources.This helps to ensure that the agency can continue to monitor and improve the effectiveness and impact of its work,even in the face of budget constraints or changing priorities.The public health preparedness and response budget received a small increase($5 million,less than 1 percent),with$55 million allocated to the combined Response Ready Enterprise Data Integration(RREDI)platform and Center for Forecasting and Outbreak Analytics.This represents a consolidation of these two programs under a single budget line,potentially constraining the resources available for each programs full functionality.RREDI is a comprehensive data-integration and decision-making platform initially created for COVID-19 response,now expanded to address outbreaks like mpox,integrating data from more than 300 sources for use by over 4,500 users from federal,state,and local entities,as well as the private sector.27 The Center for Forecasting and Outbreak Analytics,established in 2021,uses data,modeling,and analytics to forecast and track disease outbreaks,providing crucial insights to guide public health decision-making and improve outbreak response at federal,state,and local levels.There was a$10 million reduction in the Infectious Diseases Rapid Response Reserve Fund,a dedicated funding source that allows the agency to quickly respond to emerging infectious disease threats and outbreaks,which could potentially impact rapid deployment capabilities for emerging health threats.Overall,the FY 2024 Operating Plan reflects the funding levels and allocations set by Congress,which aim to support CDCs core public health functions while also directing resources to specific health threats through targeted increases in certain areas.The slight increase in overall program-level funding( $4.5 million),despite the decrease in direct budget authority(-$321.3 million),indicates a reliance on transferred funds from other sources like the Prevention Fund and PHS evaluation transfer to maintain or slightly expand operations.14TFAH tfah.orgTHE LOOMING PUBLIC HEALTH FUNDING CLIFF:A CRISIS IN THE MAKINGAs the United States emerges from the acute phase of the COVID-19 pandemic,a new crisis looms on the horizon for public health:a severe funding cliff that threatens to undo much of the progress made in strengthening the nations public health infrastructure.The combination of expiring emergency funds and rescissions(i.e.,cancellations or reductions of previously approved but unspent funding)mandated by the Fiscal Responsibility Act of 2023 poses a significant threat to critical public health programs and capabilities built up during the pandemic response.Below are the programs within CDC that face significant funding cliffs and rescissions.KEY AREAS FACING FUNDING CLIFFS:1.Advanced Molecular Detection(AMD):The AMD program,crucial for identifying and tracking infectious disease threats,received a one-time supplemental appropriation of over$1.7 billion in 2021.This funding dramatically expanded the nations capacity for genomic sequencing and analysis.However,this supplemental funding ends in 2024,leaving the program with only its annual base appropriation of$40 million28a staggering reduction.This cliff threatens to reverse critical gains in pathogen detection and surveillance capabilities.2.Public Health Workforce:CDC awarded$3 billion to health departments nationwide to address chronic workforce shortages exacerbated by the pandemic.29 This funding supported hundreds of new positions across state and local health departments.However,these are one-time funds,potentially leading to widespread layoffs and a return to pre-pandemic workforce levels that left the nation unprepared for COVID-19.In addition,$176 million in fundingabout half of its original budgetfor the Public Health AmeriCorps program was rescinded as a result of the Fiscal Responsibility Act.The program has created pathways to public health careers for more than 4,700 future public health leaders,with a focus on service in underserved communities in rural,urban,and tribal areas.30,313.Public Health Infrastructure:As of January 2024,CDC had awarded$4.35 billion in grants to strengthen public health infrastructure across 107 state,territorial,and local health departments.32 Over$3.8 billion of these funds,critical for modernizing public health systems and capabilities,are set to expire in FY 2027.Without sustained funding,health departments may struggle to maintain the improvements made in data systems,laboratory capacity,and community partnerships.4.Center for Forecasting and Outbreak Analytics(CFA):Established with one-time funding during the pandemic to enhance the nations ability to use advanced data,models,and analytics to support public health decision-making,CFA is the only federal entity with the primary mission of providing infectious disease forecasts during a response.Congress provided base funding of$50 million in FY 2023 and$41 million in FY 2024,with a rescission of$8.8 million.33 These continued decreases will require CFA to pull back on investments in establishing capabilities at the state and local levels,particularly within Insight Net,a collaborative network of more than 100 partners established to enhance modeling and analytic capabilities across U.S.health departments.Experts estimate$100 million per year would allow CFA to continue operating at its current levels.5.National Wastewater Surveillance System:Over$500 million in supplemental funding has been invested to build a nationwide wastewater surveillance system capable of detecting COVID-19 and other pathogens.34 This funding expires soon,with only$20 million proposed in the FY 2025 budget to maintain a much scaled-down version of the program.This represents a massive reduction in funding,threatening to dismantle much of the surveillance network built during the pandemic.6.Bridge Access Program:CDCs Bridge Access Program,launched to ensure continued access to COVID-19 vaccines as they transitioned to the commercial market,is set to expire in August 2024.35 This program provides 15 TFAH tfah.orgfree COVID-19 vaccines to 2530 million adults without health insurance and those whose insurance does not fully cover vaccine costs.It utilizes a network of local health providers,HRSA-supported health centers,select pharmacies,and community events to distribute vaccines.The programs expiration could leave millions of adults without access to free COVID-19 vaccines,potentially widening health disparities and reducing overall vaccination rates.This comes at a time when COVID-19 continues to circulate,and updated vaccines may be needed to address new variants.The administration has proposed a broader Vaccines for Adults program to enable uninsured adults to have access to recommended vaccines.Rescissions from the Fiscal Responsibility Act:Compounding the problem of expiring funds,the Fiscal Responsibility Act of 2023 mandated significant rescissions of unspent COVID-19 emergency funds,many of which officials had planned to use to shore up underlying public health capacity.Some of these rescissions included:l Vaccine Programs:Over$945 million was cut from programs that help get vaccines to people,build vaccine equity,and encourage vaccination.l Disease Tracking:About$430 million was taken away from efforts to track how diseases emerge and change over time.l Global Health:More than$300 million was removed from CDCs work on health issues around the world.l Data and Forecasting:Nearly$18 million was cut from programs that help predict and understand disease outbreaks.The combination of expiring supplemental funds and mandated rescissions threatens to recreate the cycle of boom-and-bust crisis funding that left the United States vulnerable to COVID-19.Key consequences include:1.Workforce Reductions:Many health departments may be forced to lay off staff hired with emergency funds,losing valuable expertise and capacity.2.Technology Setbacks:Investments in data modernization and surveillance systems may be difficult to maintain without sustained funding.3.Reduced Preparedness:The ability to quickly detect and respond to new disease threats may be compromised as programs like AMD and wastewater surveillance are scaled back.4.Widening Health Disparities:Many of the programs facing cuts were instrumental in addressing health inequities exposed by the pandemic.Their reduction may disproportionately impact under-resourced and marginalized communities.Allowing these funding cliffs to occur without providing long-term funding alternatives risks undoing years of progress.Consistent,adequate funding is necessary to maintain a robust public health system capable of protecting the nation from future health threats.We must translate the lessons learned from the pandemic into sustained support for public health infrastructure,workforce,and programsbreaking the cycle of crisis-driven funding once and for all.16TFAH tfah.orgPrevention and Public Health FundOf CDCs$9.2 billion FY 2024 budget,$1.2 billion(13 percent)came from the Prevention Fund,36 a dedicated federal funding stream for public health and prevention activities established by the Affordable Care Act in 2010.Statutorily intended to“improve health and help restrain the rate of growth in private and public sector health care costs,”37 the Prevention Fund supports“expanded and sustained national investment in prevention and public health programs.”38 Over the past decade,the Prevention Fund has supported a variety of programs and initiatives,covering disease prevention,early detection,management of health conditions,and promotion of healthy lifestyles.It has also strengthened the nations public health infrastructure,including workforce development,community transformation,and public health research.In the context of CDCs FY 2024 budget,the Prevention Fund played a significant role in offsetting some of the cuts in the agencys budget authority.While CDCs direct budget authority decreased by$321.3 million,the agencys Prevention Fund transfer increased by$282.9 million,helping to mitigate the impact of the budget authority reduction on the agencys overall program-level funding.By providing a dedicated funding stream for prevention and public health activities,the Prevention Fund helps to ensure that critical programs can continue even in the face of budget constraints or shifts in funding sources.Allocations from the Prevention Fund are directed to specific programs within CDCs budget,supplementing or replacing funds that would otherwise come from the agencys regular budget authority.In the agencys FY 2024 Operating Plan,several programs received substantial funding from the Prevention Fund.The Immunization Program,which promotes immunization efforts across the country,relied heavily on the Prevention Fund in FY 2024,receiving$681.9 million,which accounted for all of its funding.Similarly,tobacco-related programming received$125.9 million from the Prevention Fund,representing more than half of its total funding.This dedicated funding stream supports CDCs ongoing efforts to prevent and reduce tobacco use,which remains the leading cause of preventable disease,disability,and death in the United States.39 The Prevention Fund also provides critical support for programs addressing chronic diseases and environmental health issues.In FY 2024,heart disease and stroke programs received$29.3 million from the Prevention Fund,fully offsetting a reduction in budget authority funding,while diabetes-related efforts received$66.4 million,more than a full offset.In FY 2024,childhood lead-poisoning prevention efforts,a critical component of environmental health programming,were allocated$51 million from the Prevention Fund.This amount represented a$34 million increase from the previous year,which effectively offset an equivalent reduction in the programs regular budget authority.This funding is vital for CDCs efforts in identifying and preventing lead exposure,crucial to protecting childrens health and development.Finally,in FY 2024,the Preventive Health and Health Services Block Grant,which provides flexible funding to state and local health departments for a broad range of public health activities,40 received$160 million exclusively from the Prevention Fund.This block grant allows states and localities to tailor public health interventions to meet the unique needs of their communities,thereby strengthening the infrastructure of the nations public health system.Since its establishment in 2010,the Prevention Fund has significantly contributed to public health in the United States.Overall,it has been a key enabler in strengthening public health systems and enhancing health outcomes across the country,demonstrating the value of sustained investment in health prevention and public health infrastructure.As a dedicated source of funding for prevention and public health activities,the Prevention Fund has supported CDC and its partners in implementing and expanding a range of programs and initiatives based on evidence.These efforts have sought to improve health outcomes through increased vaccination rates,decreased smoking prevalence,and better chronic disease management,among other public health advancements.41 The Prevention Fund has also been instrumental in enhancing the U.S.public health infrastructure by supporting 17 TFAH tfah.orgFIGURE 2:Historical Reductions in Prevention Fund Allocations,FY 20102030Yearly Funding Trends for the Prevention and Public Health FundNote:The Affordable Care Act initially set the allocations(represented by blue,red,and gold bars),whereas the Bipartisan Budget Act of 2018(current law)introduced subsequent reductions(illustrated by blue bars).While CDC receives the majority of distributions from the Prevention Fund,remaining funds are allocated to SAMHSA and the Administration for Community Living.Source:CDC Annual Operating Plans42$0.00$250$500$750$1,000$1,250$1,500$1,750$2,000 Dollars Cut Actual or scheduled funding Sequestered201020112012201320142015201620172018201920202021202220232024202520262027203020282029$1,000$500$750$928$72$1,500$475$475$275$275$2,000$700$700$943$1,050$1,000$1,050$1,100$1,100$1,000$1,000$1,000$894$848$841$932$68$67$927$73$59$52$56$57$54$69$896$1,000$1,300$1,300$1,525$1,525$1,725$1,725$933$931$949$250$500$1,250$51$2,000investments in surveillance systems,epidemiology and laboratory capacity,and the public health workforce.This funding has helped to modernize critical health systems and improve the nations readiness and response to health crises.Additionally,by providing flexible funding through the Preventive Health and Health Services Block Grant,the Prevention Fund has empowered state and local health departments to address their unique public health needs.This flexibility has enabled tailored responses to local health challenges,helping communities build resilience against emerging threats and better manage their public health programs.While the Prevention Fund has demonstrated its value in supporting critical public health programs,it has nevertheless faced challenges since its inception.Efforts to divert Prevention Fund funds to other purposes and budget cuts have threatened the stability and effectiveness of this dedicated funding stream.To the detriment of the nations health,starting in FY 2013,the Prevention Fund has been repeatedly used for other purposes.There is a growing gap between the funds that were originally enacted and actual or scheduled funding.(See Figure 2.)In all,the fund is on pace to lose$12.95 billionabout a thirdof its originally allocated$33 billion from FY 20132029.As policymakers and public health leaders work to strengthen the U.S.public health infrastructure and respond to ongoing and emerging challenges,the Prevention Fund will remain an indispensable tool for supporting effective,evidence-based public health interventions.CDCs FY 2024 Operating Plan provides a clear illustration of the tangible impact that the Prevention Fund can have on critical public health programs,emphasizing the importance of sustained investment in prevention and public health capacity.Maintaining strong support for the Prevention Fund is essential to enabling CDC and its partners to continue their vital work in promoting health,preventing disease,and protecting communities from emerging threats.18TFAH tfah.orgFunding for key CDC initiativesCDC plays a critical role in protecting and promoting the health of the nation by supporting a wide range of public health programs and initiatives.These efforts encompass both cross-cutting aspects of public health,such as public health laboratories and surveillance systems,as well as issue-specific priorities,including emergency preparedness and response,chronic and infectious disease prevention,and substance use disorder and suicide prevention.Central to CDCs mission is addressing the persistent health disparities that exist in communities across the country.One of CDCs top priorities is strengthening Americas capacity to prevent,detect,and respond to public health emergencies,such as infectious disease outbreaks,natural disasters,and bioterrorism threats.The agencys Public Health Emergency Preparedness(PHEP)cooperative agreement provides critical funding and technical assistance to state,local,and territorial health departments to enhance their preparedness capabilities and build resilience against emerging threats.However,despite the increasing frequency and complexity of public health emergencies,funding for the PHEP program has fallen over the past two decades,limiting the ability of health departments to maintain and expand their preparedness efforts.CDCs chronic disease prevention programs support evidence-based interventions,public education campaigns,and partnerships with healthcare providers and community organizations to promote healthy behaviors and reduce the burden of chronic diseases.However,funding limitations have restricted the reach and impact of these programs,with many states and localities lacking the resources to fully implement comprehensive chronic disease prevention strategies.CDC also prioritizes efforts to address the crises of substance use disorders and suicide,which have devastating consequences for individuals,families,and communities nationwide.The agencys programs support a range of prevention services,as well as surveillance and research activities,to better understand and address these complex public health issues.However,the scale of the alcohol,drug,and suicide epidemics requires a significant expansion of these efforts,which is hindered by insufficient funding and competing public health priorities.Across all of these program areas,CDC places a strong emphasis on advancing health equity and reducing health disparities.The agency recognizes that social,economic,and environmental factors play a significant role in shaping health outcomes and that certain communities,including low-income,rural,and those predominantly comprising people of color,face disproportionate barriers to health and well-being.To address these disparities,CDC works to integrate equity considerations into all of its programs and initiatives,support targeted interventions for underserved populations,and build partnerships with diverse stakeholders to promote health for all.Despite the critical importance of these public health priorities,CDCs budgets for many of these initiatives have failed to keep pace with inflation,population growth,or the growing scope and complexity of public health challenges.This chronic underfunding has limited the agencys ability to fully support all states,territories,tribes,and localities in their efforts to prevent and control diseases,prepare for emergencies,and promote health equity.As the United States continues to grapple with the impacts of the COVID-19 pandemic and faces an array of ongoing and emerging public health threats,it is imperative that policymakers and public health leaders work to strengthen and sustain funding for these vital CDC programs and initiatives.Only by investing in a robust,responsive,and equitable public health system can the country ensure that all communities have the resources and support they need to achieve optimal health and well-being.Public health emergency preparedness and responseThe COVID-19 pandemic exposed significant vulnerabilities in Americas public health emergency preparedness and response capabilities,largely due to chronic underfunding and neglect of the nations public health infrastructure.The primary federal programs supporting state,local,tribal,and territorial public health emergency preparedness and responsethe PHEP cooperative agreement and the Health Care Readiness and Recovery program,which includes the Hospital Preparedness Program(HPP)have seen substantial funding cuts over the past two decades,limiting the ability of health departments and healthcare systems to effectively prevent,detect,and respond to emergencies.19 TFAH tfah.orgAdministered by CDC,the PHEP cooperative agreement was established in 2002 to enhance the preparedness and response capacity of state,local,tribal,and territorial public health departments in the aftermath of the September 11 terrorist attacks and subsequent anthrax attacks.43,44 The program provides funding and technical assistance to support the development and maintenance of emergency preparedness and response infrastructure,including surveillance systems,laboratory capacity,trained personnel,and partnerships between public health departments and emergency management agencies,healthcare organizations,and community-based organizations.Nearly 6,000 preparedness staff across state,local,and territorial health departments are supported in part or whole through PHEP funding,45 creating the backbone of the nations public health preparedness workforce.46 PHEP funding has been critical to building the Laboratory Response Networka system of labs that can quickly detect and respond to public health threats.It has also increased the countrys ability to track and understand how diseases spread.Additionally,this funding supports the distribution of vital medical supplies and treatments,such as vaccines and medications,during health emergencies.Despite its critical role,PHEP funding has been cut by hundreds of millions of dollars over the past two decades.(See Figure 3.)In FY 2024,PHEP received flat funding,following a$20 million increase in FY 2023.The current funding level($735 million)falls far short of the$1 billion recommended by TFAH and other public health groups to build nationwide readiness for health emergencies.$0$200,000$400,000$600,000$800,000$1,000,000$1,200,000FY 2024FY 2023FY 2022FY 2021FY 2020FY 2019FY 2018FY 2017FY 2016FY 2015FY 2014FY 2013FY 2012FY 2011FY 2010FY 2009FY 2008FY 2007FY 2006FY 2005FY 2004FY 2003Funding(thousands)FIGURE 3:PHEP Funding Slowly Recovers,Yet Requires Further InvestmentCDC funding for state and local preparedness and response,FY 20032024Note:Data from FY 20032015 represent“state and local preparedness and response capability,”including specific increases in FY 2003 for smallpox preparedness and in FY 2004 for the Cities Read-iness Initiative and U.S.Postal Service costs.Data from FY 20162024 combine funding totals from the PHEP cooperative agreement and the Academic Centers for Public Health Preparedness.A shift in the reporting practices within CDCs annual operating plans has necessitated these differences.Source:CDC Annual Operating Plans4720TFAH tfah.orgSimilarly,Health Care Readiness and Recovery programs,administered by the Administration for Strategic Preparedness and Response(ASPR)at HHS,have seen their funding cut from$515 million in FY 2003 to$305 million in FY 2024a nearly two-thirds reduction after adjusting for inflation.48 Within this line,the HPP serves as the foundation for nationwide healthcare readiness by providing funding,technical assistance,and guidance to healthcare organizations to enhance their preparedness and response capabilities and to encourage collaboration with public health departments and other community partners.49The HPP has been instrumental in strengthening the ability of healthcare systems to respond to public health emergencies and maintain essential services during crises.50,51 Through the HPP,healthcare coalitions have been established across the country,fostering collaboration and resource-sharing among hospitals,public health departments,and emergency management agencies.These coalitions have been crucial in coordinating medical surge capacity,managing and distributing medical supplies,and ensuring the continuity of care during emergencies.For example,Regional Medical Response System,the lead agency for one of Oklahomas six health care coalitions,coordinated a timely and successful response to the 18 tornadoes that hit central Oklahoma in April 2023,including relocating nursing home residents within hours after a tornado destroyed their facility.52 The erosion of PHEP and HPP funding over time increased the vulnerability of the United States ahead of the COVID-19 pandemic.Understaffed health departments were forced to respond to a 21st-century pandemic with outdated tools and limited resources,53,54 while healthcare systems struggled with insufficient surge capacity,inadequate supplies of personal protective equipment,and lack of training for high-consequence infectious diseases.55,56,57,58During public health emergencies that exceed existing capacity and countermeasures,supplemental funding may be required.The most common approach is for Congress to pass a supplemental appropriation,as it did during the initial stages of the COVID-19 pandemic.However,emergency supplemental funding can create additional challenges,such as restrictions on how funds can be used(e.g.,COVID-19-related supplemental funding could not easily be repurposed for mpox vaccination clinics,even when the two outbreaks overlapped),short-term funding that hinders workforce retention,and a boom-and-bust cycle that contributes to an unstable public health infrastructure.Other mechanisms,such as the Infectious Diseases Rapid Response Reserve Fund59 and the Public Health Emergency Rapid Response Fund,can potentially accelerate the availability of resources during emergencies.However,these funds are limited in size and scope and are not intended to replace adequate annual funding for public health agencies at all levels of government.The Biden-Harris Administrations FY 2025 budget request included mandatory funding for pandemic preparedness across federal agencies.Within that request,$6.1 billion in mandatory funds for CDC would go to modernize and build laboratory capacity,strengthen public health data systems,enhance disease surveillance,and support the evaluation of vaccine and medical countermeasure safety and effectiveness.60 If approved,this funding would represent a significant investment in bolstering the U.S.public health infrastructure and enhancing its capacity to respond to existing and emerging health threats.By prioritizing sustained investment in public health emergency preparedness and response,policymakers can help build a more resilient and agile public health system capable of protecting the health and well-being of all U.S residents in the face of future crises.Promoting health at the community levelThe conditions in which people are born,live,work,play,and age significantly impact their health and well-being.61,62,63 Social determinants of healthsuch as economic opportunity,accessible transportation,robust physical infrastructure,educational access,affordable and nutritious food,stable housing,and public safetyall contribute to wellness and life expectancy.64,65 Despite the profound influence of these factors on a communitys health outcomes,66 many places still struggle to make healthy options easily accessible for people.Moreover,funding specifically targeted at addressing social determinants of health by CDC remains limited compared with the large-scale need to alter these conditions.Improving social determinants of health and the overall health of population groups requires collaboration among governmental and nongovernmental organizations,as well as community members.Public health leaders play a critical role 21 TFAH tfah.orgby initiating and informing policy interventions,convening multisector stakeholders,and providing actionable data.For example,community partnerships have developed and advocated for increasing the number of healthy food retailers in low-income neighborhoods;engaged in Complete Streets planning to address the safety needs of pedestrians,bicyclists,and transit riders of all ages and abilities;67 and launched multimedia education campaigns to reduce tobacco use.The National Diabetes Prevention Program is another model for promoting health at the community level.This evidence-based lifestyle change program,led by CDC,aims to prevent or delay type 2 diabetes among adults with prediabetes.68 By partnering with public and private organizations to offer structured sessions that focus on healthy eating,physical activity,and stress management,the program has demonstrated significant success in improving health outcomes and reducing healthcare costs.Trained lifestyle coaches work with participants to set goals,track progress,and provide ongoing support,resulting in an estimated savings of$1,146 per participant in diabetes-related healthcare costs.69 Two complementary efforts include the Appalachian Diabetes Control and Translation Project70 and the Native Diabetes Wellness Program.71 Millions of people in Appalachia suffer from poor health outcomes,including elevated rates of type 2 diabetes,due to a complex interplay of socioeconomic,geographical,and cultural factors.72 Similarly,Native Americans exhibit the highest prevalence of type 2 diabetes among all racial groups in the United States,73 a phenomenon rooted in centuries of colonization,forced relocation,and cultural assimilation.Both projects utilize regional coalitions and community resources to deliver culturally appropriate education and lifestyle interventions to communities disproportionately impacted by diabetes.However,insufficient funding limits the reach of these programs.Health disparities account for an estimated$320 billion in annual healthcare spending,which could grow to$1 trillion or more by 2040 if not addressed.74 Two key CDC programs that specifically focus on racial and ethnic populations at elevated risk of preventable illness,injury,and deathRacial and Ethnic Approaches to Community Health(REACH)and Healthy Tribesare underfunded and depend on limited resources.Both programs have a solid track record of advancing culturally appropriate,evidence-informed,and effective interventions for populations that experience disproportionate burdens of chronic disease.Congress should appropriately fund both programs to match the scale of the problem.Community prevention efforts can effectively address a wide variety of negative health outcomes,such as chronic disease,substance misuse,injury,and violence.75,76 By extension,this investment can also help reduce preventable healthcare spending,producing a substantial return on investment.77 For example,school-based substance misuse screenings,brief interventions,and referrals to treatment programs have produced returns on investment as high as$20 for every$1 spent.78 Tobacco-control mass-media campaigns have demonstrated impressive returns,79 and CDCs Tips from Former Smokers campaign,funded by the Prevention Fund,resulted in hundreds of thousands of lifetime quits,preventing early deaths and smoking-related healthcare costs.80While CDCs existing programs have proved effective in addressing several nonmedical factors of health,it was not until FY 2021 that the agency specifically received funds($3 million)for strategies that focus on the social determinants of health.81 The$22 million that CDC received from FY 2022 to FY 2024 to address social determinants of health82 have continued to build momentum for innovative work,but that amount needs to grow to fully address the scope of the issue and allow CDC to fund the implementation of plans to address these issues in communities.To build the evidence base for future work in this area,CDC evaluated existing multisector coalitions that are working to advance health equity through solutions centered on the social determinants of health.In a first-year evaluation,CDC found that of 42 community partnerships evaluated,90 percent of them contributed to community changes that promote healthy living.83 By prioritizing investment in community-level health promotion and addressing the social determinants of health,policymakers can help create the conditions for all people to live healthier lives,reduce health disparities,build more equitable and resilient communities,and reduce future healthcare spending.This will require a sustained commitment to funding,a focus on community engagement and leadership,and a willingness to work across sectors and agencies to develop innovative solutions to complex challenges.22TFAH tfah.orgChronic disease preventionChronic diseases are a significant burden on the health and well-being of U.S.residents,with roughly 60 percent of adults living with one or more chronic conditions,such as heart disease,diabetes,cancer,obesity,and asthma.84 These conditions are responsible for seven in 10 deaths each year in the United States85 and,along with mental health conditions,account for the vast majority of the countrys health spending.86 Despite the enormous impact of chronic diseases,CDC is on track to spend only$1.4 billion on chronic disease prevention and health promotion in FY 2024,a level that has remained roughly the same in recent years and is below the FY 2015 level after adjusting for inflation.(See Figure 4.)Insufficient funding limits the reach and effectiveness of evidence-based programs designed to prevent and manage chronic diseases.For example,CDCs State Physical Activity and Nutrition(SPAN)programwhich provides strategies to improve nutrition and encourage physical activity in early care,education,and community settingsonly has enough funding to support programs in 17 states in FY 2024.88 Expanding SPAN to all 50 states would require an estimated additional$1.2 million per state,a relatively small investment compared with the$170 billion in obesity-related healthcare costs the United States spends annually.89While genetic risk factors contribute to the development and progression of chronic diseases,behavioral factors such as smoking,alcohol consumption,poor nutrition,and lack of physical activity play a significant role.90 Sedentary lifestyle alone contributes to an estimated 10 percent of premature deaths,91 is a major risk factor for severe COVID-19,92 and costs the healthcare system tens of billions of dollars annually.93 Importantly,these behavioral risk factors are tied to social,economic,and environmental conditions,highlighting the need for prevention efforts that address the underlying determinants of health and Funding,FY 2024 dollars(millions)Chronic disease prevention and health promotion Prevention Fund Other chronic disease and health promotion Total chronic disease prevention and health promotion$0$400$800$1200$1600FY 2024FY 2023FY 2022FY 2021FY 2020FY 2019FY 2018FY 2017FY 2016FY 2015$576$952$1,527$428$1,059$1,487$421$967$1,388$303$1,116$1,419$305$1,113$1,418$301$1,161$1,462$296$1,181$1,477$279$1,184$1,462$262$1,207$1,468$241$1,193$1,434FIGURE 4:CDCs Current Chronic Disease Funding Lags Behind FY 2015 LevelChronic disease funding,adjusted for inflation,FY 20152024Note:Funding levels are presented in FY 2024 dollars.Data have been adjusted for inflation using the Bureau of Economic Analysiss Gross Domestic Product price index.Source:CDC Annual Operating Plans8723 TFAH tfah.orgpromote healthful behaviors through improved access to healthy foods and physical-activity-friendly environments.The burden of chronic diseases is not distributed equally,with historically marginalized and under-resourced communities experiencing disproportionate impacts.Factors such as poverty,limited access to healthcare,discrimination,and environmental inequities,including disproportionate exposure to pollutants,lack of green spaces,and limited access to healthy food options,contribute to higher rates of chronic conditions like diabetes,heart disease,and obesity in these populations.For example,Black and Hispanic adults are more likely to have diabetes compared with their white counterparts,94,95 and low-income neighborhoods often lack access to healthy food options and safe spaces for physical activity.These disparities are rooted in systemic inequalities and social determinants of health,which have been perpetuated by a long history of discriminatory policies and practices.Addressing these underlying issues requires a concerted effort to dismantle structural barriers,invest in community-led solutions,and prioritize health equity in all aspects of decision-making.Public health agencies play a critical role in this work by collecting and analyzing data to identify disparities,engaging communities in the development and implementation of interventions,and advocating for policies that promote fair opportunities for health.Additional resources are needed to continue advancing health equity.To effectively reduce healthcare expenditures related to treating chronic diseases,increased investment in proven prevention programs is essential.CDCs chronic disease prevention and health-promotion activities focus on four key areas:(1)measuring disease prevalence and risk factors to inform targeted interventions,(2)making environmental improvements that facilitate healthy choices,(3)strengthening prevention services within healthcare systems to integrate routine screening and early interventions,and(4)creating connections between clinical services and community programs that support comprehensive disease prevention and management strategies.96CDC has several cost-effective,evidence-based prevention and control programs ready for community implementation.97 The National Breast and Cervical Cancer Early Detection Program has served more than 6 million women since 1991,identifying over 75,000 invasive breast cancers,5,000 invasive cervical cancers,and 240,000 precancerous cervical lesions.98 The Tips from Former Smokers campaign,aimed at encouraging smoking cessation,helped 1 million smokers successfully quit between 2012 and 2018,prevented an estimated 129,000 early deaths,and saved roughly$7.3 billion in smoking-related healthcare costs.The Million Hearts initiative prevented an estimated 135,000 cardiac events from 2012 to 2016,averting$5.6 billion in medical costs.99 These achievements demonstrate the significant impact of CDCs work in promoting healthier lifestyles and reducing the burden of chronic diseases in the United States.In CDCs FY 2024 Operating Plan,the Chronic Disease Prevention and Health Promotion budget was allocated$1.4 billion,a slight increase of$3.5 million from the FY 2023 level.The majority of the funding is directed toward cancer prevention and control,heart disease and stroke,and tobacco-control and prevention efforts.While some programs addressing health disparities and social determinants of health receive comparatively smaller allocations,they play a vital role in promoting health equity and tackling the root causes of chronic diseases.To effectively address the growing burden of chronic diseases and reduce health disparities,policymakers must prioritize sustained investment in comprehensive,community-based prevention and health-promotion programs.By addressing the root causes of chronic diseases,promoting healthy behaviors,and ensuring equitable access to preventive services and resources,the country can improve the health and well-being of all U.S.residents while reducing the staggering costs associated with these largely preventable conditions.24TFAH tfah.orgSubstance misuse and suicide preventionThe United States continues to face drug overdose and mental health crises that claim the lives of tens of thousands of U.S.residents each year.Provisional CDC data released in May 2024 predicted more than 107,000 overdose deaths in the 12-month period ending in December 2023,100 with most deaths attributed to illicit synthetic drugs like fentanyl and methamphetamine.101 American Indian/Alaska Native(AI/AN)and Black individuals have been disproportionately affected by the recent spike in drug overdose deaths,with the highest rates in 2022 among the non-Hispanic AI/AN population(65.2 deaths per 100,000 residents)and the non-Hispanic Black population(47.5 deaths per 100,000 residents).102These alarming trends can be attributed to a combination of factors,including the proliferation of highly potent synthetic opioids,the impact of the COVID-19 pandemic on mental health and substance use,and the persistent disparities in access to prevention,treatment,and recovery services.The widespread availability of illicitly manufactured fentanyl,often mixed with other drugs without an individuals knowledge,has dramatically increased the risk of overdose.The social and economic crises precipitated by the pandemic,including extensive social isolation,coupled with barriers to behavioral health treatment and racial disparities in access to treatment options,have also put individuals in need of mental health or other services at particular risk.103 Furthermore,long-standing structural inequities,such as poverty,discrimination,and a lack of access to healthcare,have contributed to the disproportionate impact of these crises on AI/AN and Black communities,which often face barriers to accessing culturally appropriate and evidence-based prevention and treatment services.Concurrent with the drug overdose crisis,the number of suicides in the United States reached a record high of nearly 49,500 in 2022.104 The suicide rate also rose to its highest level since 1941.While the suicide rate increased for both males and females,the total number of suicides among males(39,255)was nearly four times that of females(10,194).Suicide rates generally declined for younger age groups but increased for older age groups.The highest suicide rate was among non-Hispanic AI/AN individuals at 26.7 per 100,000.CDC employs a comprehensive strategy to address these challenges,focusing on integrated research,policy,education,and community-based initiatives.It enhances understanding and response through robust surveillance and data-collection systems,which track trends in drug overdose and suicide.Additionally,the agency conducts research to identify risk and protective factors,informs guidelines for opioid prescriptions and suicide prevention,and supports state,local,and tribal programs with funding and technical assistance.Promoting safe and supportive school environments,positive youth development programs,and policies and practices that support LGBTQ students can further contribute to reducing substance misuse and suicide.And public education campaigns play critical roles in raising awareness about the dangers of substance misuse and the importance of mental health support.These campaigns often focus on topics such as the life-saving role of naloxone in reversing opioid overdoses,strategies for preventing overdoses,and reducing the stigma surrounding substance use treatment to encourage more individuals to seek help.To help reverse these alarming trends and promote positive outcomes,CDC also focuses on the prevention of adverse childhood experiences(ACEs).ACEs are potentially traumatic events that occur in childhood,such as experiencing abuse,witnessing domestic violence,or growing up with family substance misuse,which can have long-lasting effects on health and well-being.An estimated 64 percent of adults report having experienced at least one ACE,105 and investing in programs that address ACEs could significantly reduce adult depression cases,among other benefits.Funding for CDCs ACEs prevention work has increased slightly from$4 million in FY 2020,its first year of funding,to$9 million in FY 2024.While suicide is a complex issue with multiple contributing factors,it is important to recognize that suicidal crises are often temporary and characterized by a brief period of acute risk.106 Research has shown that many suicide attempts are impulsive acts,with the time between the decision to act and the attempt itself sometimes being as short as a few minutes to a few hours.This narrow window of heightened vulnerability underscores the critical 25 TFAH tfah.orgimportance of immediate intervention and support for individuals in crisis.People who survive suicide attempts often go on to lead fulfilling lives,with the majority not dying by suicide at a later date.107 This highlights the potential for recovery and the need for accessible,effective mental health services and support systems that can help individuals navigate challenging times and build resilience.The establishment of the 988 Suicide and Crisis Lifeline in July 2022 represents a significant step toward a comprehensive crisis-response system.This service,an expanded and rebranded update of its predecessor,the National Suicide Prevention Lifeline,provides a shorter,easier-to-remember number for accessing immediate crisis support.Since its launch in July 2022,the 988 Lifeline has seen substantial growth in usage.In its first two years of operation,counselors have answered more than 10 million calls,texts,and chats from people experiencing mental health or substance use crises.The service has expanded significantly,with a 51 percent increase in texts answered in the past 12 months compared to the year before.108 The average speed to answer has also improved dramatically,decreasing from 2 minutes and 39 seconds to just 41 seconds.109 The 988 Lifeline has expanded its services to better support populations at risk of suicide,adding Spanish text and chat services,specialized support for LGBTQ youth and young adults,and video-phone service for deaf and hard-of-hearing individuals.These enhancements were made possible by nearly$1 billion in investments from SAMHSA,as well as state funding.As the 988 Lifeline continues to evolve and expand,it will serve as a vital component of a broader vision for behavioral health crisis response,ensuring that anyone,anywhere,at any time has someone to talk to,someone who will respond,and a safe place to turn for help.Substance misuse,overdose,and suicide share common risk and protective factors.Addressing them requires socially focused efforts,such as strengthening economic support for families,early intervention to reduce harm when children are mistreated,and supporting safe and inclusive schools.CDC supports efforts to address these issues through a prevention-focused approach that translates research into practical actions.By emphasizing the role of public health departments in addressing social determinants of health,as well as shared risk and protective factors,CDC aims to create sustainable population-level and community health improvements.This approach effectively complements the individual and treatment-focused services provided by SAMHSA and other agencies,ensuring a holistic strategy that spans prevention,treatment,and recovery.CDCs FY 2024 budget dedicates$30 million to suicide prevention,with no change from FY 2023.CDC funding for opioid overdose prevention and surveillance increased from$125 million in FY 2017 to nearly$506 million in FY 2024.Despite these efforts,gaps remain in addressing the underlying causes of substance misuse and suicide,particularly among communities of color and other populations at higher risk.Policymakers must prioritize sustained investments in comprehensive,community-based prevention strategies that address social determinants of health,promote resilience,and ensure equitable access to mental health and substance use disorder services.By focusing on upstream prevention and early intervention,the country can work toward reducing the devastating impact of substance misuse and suicide on individuals,families,and communities across the nation.CDC Program Funding to States,FY 2023More than 80 percent of the funding that CDC receives annually is directed to states,localities,tribes,territories,and other external partners to support related health programming in their communities.Major priorities include funding for childhood vaccination(e.g.,Hepatitis B,MMR,DTaP)programs;prevention of serious infectious diseases such as HIV/AIDS,tuberculosis,and various sexually transmitted infections;and chronic disease prevention.Table 2 shows CDC program funding awarded to states across major budget categories in FY 2023.In total,CDC awarded$14.9 billion.The data provide a comprehensive picture of how CDC distributes program funding to support state public health efforts aligned with national priorities.While the funding is substantial overall,gaps remain in key areas.Sustained,predictable funding will be critical for states to make progress on a range of public health challenges moving forward.26TFAH tfah.orgTABLE 2:CDC PROGRAM FUNDING TO STATES,FY 2023StateAgency for Toxic Substances and Disease Registry(ATSDR)Birth Defects,Developmental Disabilities,Disability and HealthCDC-Wide Activities and Program SupportChildhood Obesity Demonstration ProjectChronic Disease Prevention and Health PromotionEmerging and Zoonotic Infectious DiseasesEnvironmental HealthHealth Reform-Toxic Substances&Environmental Public HealthHIV/AIDS,Viral Hepatitis,STI and TB PreventionAlabama$7,588,429$11,971,854$16,042,737$2,425,998$716,861$14,320,217 Alaska$586,596$491,000$4,742,200$20,745,139$1,044,066$464,963$2,798,183 Arizona$390,000$1,689,998$19,400,526$21,133,658$1,945,627$2,147,185$12,966,092 Arkansas$454,400$1,766,000$8,480,959$12,427,059$1,088,139$6,414,453 California$2,249,999$2,113,155$84,490,700$345,000$37,953,203$14,096,456$4,823,919$120,904,936 Colorado$2,730,180$1,726,308$14,814,291$16,192,053$7,551,987$3,098,876$11,132,196 Connecticut$533,882$9,237,613$9,343,861$6,242,153$2,183,754$6,764,120 Delaware$6,769,143$7,215,292$501,515$1,115,095$2,676,334 D.C.$383,712$21,917,130$39,376,576$21,605,988$10,080,301$1,672,073$39,755,868 Florida$492,070$1,939,639$33,322,917$16,422,374$4,674,582$2,339,168$71,136,105 Georgia$484,751$5,332,961$88,678,548$50,000$81,032,636$10,620,013$2,763,732$58,172,492 Hawaii$166,000$11,252,988$8,592,519$1,780,722$642,273$3,146,480 Idaho$300,000$166,000$4,452,897$5,899,800$567,641$512,000$2,219,566 Illinois$1,933,184$6,491,399$26,432,042$330,000$37,347,548$3,413,558$3,410,892$31,072,002 Indiana$1,642,811$14,685,993$10,745,945$1,345,042$1,930,217$13,006,002 Iowa$1,861,000$7,676,742$10,715,379$3,927,662$2,016,359$2,984,790 Kansas$429,907$9,003,332$11,246,038$1,271,078$1,261,885$2,771,734 Kentucky$160,000$12,548,198$12,752,085$1,547,092$2,050,504$7,201,013 Louisiana$312,998$165,998$14,169,889$13,626,499$2,900,050$1,323,694$18,993,726 Maine$166,000$6,804,681$7,769,974$1,660,741$2,031,000$2,320,042 Maryland$4,865,053$73,671,126$150,000$28,315,016$20,836,627$3,027,425$28,417,169 Massachusetts$2,739,275$3,356,608$42,076,609$307,000$20,449,573$8,437,598$3,210,792$15,588,341 Michigan$2,722,500$2,096,152$28,064,153$28,162,434$4,791,484$8,914,197$19,926,057 Minnesota$485,586$3,149,514$25,417,542$22,215,241$11,061,505$3,402,859$8,600,184 Mississippi$10,924,890$14,485,895$344,094$671,265$11,735,096 Missouri$584,355$2,137,726$19,652,107$300,000$16,406,048$1,580,144$2,399,372$13,408,020 Montana$357,131$897,500$5,901,297$10,957,166$972,000$1,013,325$2,999,999$1,862,069 Nebraska$166,000$7,408,097$300,000$8,188,396$1,567,974$1,136,113$2,862,108 Nevada$836,099$7,472,107$11,451,346$1,290,347$1,214,421$8,076,877 New Hampshire$407,372$738,500$5,837,550$8,651,439$1,443,077$2,496,526$1,891,113 New Jersey$2,734,622$1,916,001$15,231,534$12,430,689$1,798,400$2,379,488$27,915,915 New Mexico$547,083$166,000$10,544,693$14,918,267$2,412,252$1,884,273$2,979,273 New York$2,641,248$9,864,176$54,152,337$34,953,226$12,461,808$5,173,247$100,856,691 North Carolina$2,606,637$4,263,752$32,836,201$23,202,946$6,517,786$2,118,166$22,425,842 North Dakota$166,000$4,081,939$7,591,831$1,005,105$2,123,503 Ohio$472,500$1,058,143$28,272,755$16,632,206$6,254,698$1,982,280$17,682,480 Oklahoma$160,000$13,974,927$14,382,139$701,608$515,000$7,603,726 Oregon$646,130$1,126,738$10,888,411$17,992,782$2,877,694$1,758,037$7,473,591 Pennsylvania$499,819$959,569$38,785,446$18,870,226$6,015,769$2,706,736$28,476,181 Rhode Island$467,030$416,000$10,497,138$300,000$10,682,020$1,670,814$2,273,738$2,331,210 South Carolina$1,411,000$18,123,246$18,466,255$1,781,536$1,150,000$13,332,575 South Dakota$3,784,739$11,267,090$1,283,492$498,955$1,628,067 Tennessee$573,019$4,935,078$16,044,539$15,489,532$4,375,972$1,338,763$17,593,832 Texas$445,000$3,573,922$56,879,864$27,101,834$4,131,190$3,037,674$69,048,370 Utah$300,000$3,484,838$15,522,150$13,296,126$5,948,439$2,485,583$2,792,141 Vermont$166,000$3,607,395$8,210,485$1,133,987$1,933,306$1,812,193 Virginia$295,498$1,973,752$45,656,097$24,528,923$6,035,571$4,408,099$16,883,600 Washington$436,447$691,000$43,668,414$20,740,342$9,239,545$2,277,333$14,541,594 West Virginia$744,971$5,117,681$11,367,702$987,408$664,491$2,670,999 Wisconsin$688,484$2,295,247$16,766,266$16,748,545$7,788,463$3,103,547$5,424,463 Wyoming$166,000$3,669,734$5,370,829$803,201$833,775$1,822,100 United States$31,501,508$113,595,074$1,102,843,073$2,082,000$892,336,336$216,234,011$106,513,236$2,999,999$910,541,731 27 TFAH tfah.orgTABLE 2:CDC PROGRAM FUNDING TO STATES,FY 2023StateImmunization and Respiratory DiseasesInjury Prevention and ControlOccupational Safety and HealthPublic Health Preparedness and ResponsePublic Health Scientific Services(PHSS)Public Health Social Services Emergency Fund(PHSSEF)Vaccines for ChildrenWorld Trade Center Health Programs(WTC)Total State FundingAlabama$4,403,090$6,836,435$1,850,000$9,785,870$835,309$82,270,134$79,287,867$238,334,801 Alaska$2,561,775$5,560,431$99,352$5,210,000$1,494,737$20,395,964$12,220,922$78,415,328 Arizona$8,605,077$15,547,691$639,956$13,007,079$1,410,149$101,469,498$112,521,081$312,873,617 Arkansas$3,361,534$4,715,788$6,986,193$996,903$48,501,675$49,692,842$144,885,945 California$32,898,276$36,202,658$9,270,681$66,434,088$5,855,552$478,698,668$544,077,381$1,440,414,672 Colorado$6,482,476$12,316,616$5,002,675$11,079,633$1,819,775$77,514,065$62,770,185$234,231,316 Connecticut$6,916,507$12,949,228$2,240,487$8,123,961$1,498,898$49,505,572$44,758,922$160,298,958 Delaware$2,205,131$4,656,727$5,426,073$642,368$22,328,003$14,190,821$67,726,502 D.C.$11,508,376$20,794,417$1,167,600$9,070,295$5,943,636$18,405,216$13,965,717$215,646,905 Florida$12,349,620$22,901,655$3,779,377$32,992,280$2,929,708$260,466,975$331,756,625$797,503,095 Georgia$21,222,580$38,174,752$690,625$18,431,023$18,538,836$140,743,535$176,539,452$661,475,936 Hawaii$2,784,257$3,630,835$5,567,141$1,651,353$38,419,849$19,098,893$96,733,310 Idaho$2,795,326$3,103,498$5,742,299$840,549$30,704,314$24,633,210$81,937,100 Illinois$21,187,317$19,348,284$4,599,278$28,122,647$2,918,007$168,938,556$147,408,670$502,953,384 Indiana$4,520,156$12,645,965$150,000$12,101,913$1,361,657$89,849,432$96,382,752$260,367,885 Iowa$4,710,535$6,663,821$4,734,819$6,873,572$487,442$45,706,977$43,328,772$141,687,870 Kansas$3,607,950$7,819,504$76,000$7,154,030$933,669$43,863,519$33,402,524$122,841,170 Kentucky$3,647,330$11,234,164$3,637,091$8,733,185$580,391$68,366,734$64,874,465$197,332,252 Louisiana$2,204,982$14,770,138$658,508$9,083,163$1,441,567$131,153,913$92,094,150$302,899,275 Maine$3,073,015$8,862,101$5,210,000$675,858$26,160,781$16,681,299$81,415,492 Maryland$15,844,011$15,034,481$9,393,691$14,480,777$15,418,516$289,231,285$94,513,387$499,489$613,698,053 Massachusetts$6,642,765$16,288,885$3,575,795$13,927,467$1,047,021$94,390,701$86,147,185$260,266$318,445,881 Michigan$10,785,722$20,095,654$2,833,147$17,051,164$1,533,094$125,832,573$104,463,733$377,272,064 Minnesota$8,797,351$11,324,197$3,464,985$12,231,559$1,218,084$74,850,362$54,555,719$240,774,688 Mississippi$3,097,223$3,979,172$6,888,671$488,868$49,233,896$48,313,534$150,162,604 Missouri$5,322,993$11,276,940$3,418,479$11,155,537$792,697$80,711,366$75,212,349$244,358,133 Montana$1,680,068$5,116,031$288,220$5,510,000$311,717$22,582,018$10,582,514$71,031,055 Nebraska$2,689,150$5,689,890$2,667,183$5,807,091$603,084$34,863,705$27,043,741$100,992,532 Nevada$3,194,775$7,225,451$7,675,437$773,997$50,235,479$44,168,389$143,614,725 New Hampshire$1,932,322$4,327,171$283,077$5,370,707$277,673$24,417,758$12,670,698$70,744,983 New Jersey$7,504,430$11,008,084$1,112,760$16,927,878$1,050,990$117,393,566$104,895,901$1,000,000$325,300,258 New Mexico$4,596,992$7,257,762$1,481,660$6,958,927$375,666$37,416,410$36,909,939$128,449,197 New York$21,988,230$21,905,714$5,237,945$40,222,710$5,662,860$283,091,984$308,961,624$21,894,633$929,068,433 North Carolina$8,485,691$16,866,560$3,063,114$15,601,710$1,074,356$137,279,686$160,999,025$437,341,472 North Dakota$2,099,747$2,437,682$5,210,000$588,553$17,329,280$8,947,057$51,580,697 Ohio$11,724,614$24,042,161$3,437,022$18,328,130$1,165,543$145,440,442$151,346,877$427,839,851 Oklahoma$3,129,547$8,145,858$50,000$8,008,571$532,150$66,789,061$71,352,307$195,344,894 Oregon$6,589,090$9,283,888$1,867,457$8,466,536$720,505$62,742,205$42,418,510$174,851,574 Pennsylvania$13,877,093$23,454,387$3,050,069$20,019,413$1,480,281$173,479,346$152,227,305$483,901,640 Rhode Island$2,408,786$7,948,187$5,710,743$264,535$23,314,099$17,117,284$85,401,584 South Carolina$2,648,002$7,179,645$10,499,488$626,428$72,679,857$81,451,027$229,349,059 South Dakota$1,589,186$3,466,195$5,493,952$249,624$21,616,767$11,269,283$62,147,350 Tennessee$9,374,786$13,590,769$828,503$12,032,654$790,440$102,415,166$108,523,680$307,906,733 Texas$24,281,710$17,336,088$4,304,181$43,765,264$3,485,290$402,352,407$616,936,504$1,276,679,298 Utah$3,174,925$6,283,180$2,795,060$7,233,853$406,478$40,530,031$30,349,934$134,602,738 Vermont$2,051,661$5,680,290$5,497,162$225,977$15,955,192$8,062,458$54,336,106 Virginia$5,790,496$13,382,743$1,008,542$17,614,956$8,177,810$185,729,488$94,078,705$425,564,280 Washington$11,932,306$15,587,269$4,621,091$13,364,241$1,118,692$95,258,508$96,084,099$329,560,881 West Virginia$1,097,287$7,399,418$508,000$5,504,439$336,381$31,380,117$24,946,455$92,725,349 Wisconsin$4,429,634$12,077,838$2,810,511$12,412,034$648,515$84,660,795$52,420,129$222,274,471 Wyoming$1,453,522$2,957,506$5,205,186$219,996$17,331,013$6,053,226$45,886,088 United States$371,259,425$606,383,804$100,696,941$659,310,702$104,522,185$4,923,997,943$4,722,709,124$23,654,388$14,891,181,480 Note:The U.S.total reflects grants and cooperative agreements awarded to all 50 states and the District of Columbia.It does not include funding allo-cated to territories,localities,or tribes to ensure comparability.Source:CDC Grant Funding Profiles11028TFAH tfah.orgBroader federal funding landscapeWhile CDC serves as the primary federal public health agency,its efforts are supported and complemented by several other federal agencies within and outside HHS.These agencies work collaboratively,enabling a broad approach to the health challenges facing the nation.Health Resources and Services AdministrationHRSA plays a critical role in improving access to healthcare services for people who are geographically isolated or economically or medically vulnerable.This agencys efforts in health workforce education and training,health systems enhancements,and increasing patient access to healthcare help bolster public health capabilities across the country.In FY 2024,HRSAs funding level of$8.9 billion represents a decrease of$577 million from the previous years$9.5 billion.111Substance Abuse and Mental Health Services Administration SAMHSA advances the nations behavioral health.Its programs prioritize treatment and recovery approaches for individuals with mental and substance use disorders.As public health challenges like the opioid epidemic and mental health crises increase,the importance of SAMHSAs work has become increasingly prominent.The funding for FY 2024,$7.45 billion,was a$70 million decrease from FY 2023.112Food and Drug Administration(FDA)The FDA ensures the safety of food and drugs,which directly impacts public health.Its regulatory roles include overseeing the manufacture and distribution of drugs,biological products,medical devices,cosmetics,and tobacco products,and ensuring food safety and security.The FDAs total FY 2024 budget authority is$3.6 billion,slightly below what it was in FY 2023.113Agencies Outside HHSBeyond HHS,many federal departments are assisting in promoting health by addressing social determinants of health,such as access to safe housing,adequate nutrition,and clean air and water.l USDA manages nutritional programs that affect public health through food security,such as SNAP,WIC,and school lunch programs.l EPA plays a critical role in protecting human health and the environment.It regulates air quality,water quality,and chemical safety,areas that have significant public health implications.l HUD contributes significantly to public health through its housing policies and programs,which have profound impacts on community health outcomes.In addition to its efforts to improve housing conditions and reduce homelessness,HUD also addresses environmental health hazards within homes,such as lead exposure and poor air quality.29 TFAH tfah.orgState and Local Public Health FundingThe United States public health system is a complex network of federal,state,local,tribal,and territorial agencies that work together to protect and promote the health of the nation.At the federal level,agencies provide leadership,guidance,and funding to support public health initiatives nationwide.These agencies set national health priorities,conduct research,and develop evidence-based guidelines and policies.State and territorial health agencies play a dual role:they serve as a link between federal agencies and local health departments,while also working directly on the front lines alongside local agencies.They are responsible for allocating federal funds,implementing statewide and territory-wide policies and programs,and providing technical assistance and support to local agencies.Additionally,state health departments may be actively involved in community-level interventions and programs.Tribal health departments work in concert with federal and state agencies but operate under the sovereignty of their respective tribes,tailoring public health initiatives to meet the cultural and specific needs of their communities.Local health departments,which are typically county or city-based,are on the front lines,directly serving their communities through a variety of programs and services.When it is operating effectively,this multi-tiered structure allows for a coordinated approach to public health,with each level playing a distinct yet interconnected role.The structure leverages centralized resources and expertise while enabling local,tribal,and territorial flexibility and adaptability.Within this system,state,local,tribal,and territorial health agencies work to promote and protect the health and well-being of the communities they serve.These agencies are responsible for a wide range of essential public health functions,including disease surveillance,health education,immunization programs,environmental health services,and emergency preparedness and response.They collaborate with community partners,healthcare providers,and other stakeholders to assess and address the unique health needs of their populations,with a focus on preventing chronic diseases,reducing health disparities,and promoting health equity.By implementing evidence-based interventions,developing and enforcing public health policies,and providing critical services to those in need,state and local health agencies play a vital role in ensuring that all individuals have the opportunity to live healthy lives.Federal funding is critical to the capacity and effectiveness of state and local health departments.These agencies rely heavily on federal grants and cooperative agreements to support a wide range of programs and services.When federal funding is inadequate,inconsistent,or subject to budget cuts,it can undermine the ability of state and local health departments to maintain essential services,res
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ISSUE REPORTSEPTEMBER 20242024The State of Obesity:BETTER POLICIES FOR A HEALTHIER AMERICASPECIAL FEATURE:The Food Environment and Systems2 TFAH tfah.org2TFAH BOARD OF DIRECTORSStephanie Mayfield Gibson,M.D.,FCAPChair of the TFAH Board of Directors Former Director,U.S.COVID-19 Response Initiative Resolve to Save LivesDavid Fleming,M.D.Vice Chair of the TFAH Board of DirectorsClinical Associate ProfessorUniversity of Washington School of Public HealthRobert T.Harris,M.D.,FACPTreasurer of the TFAH Board of DirectorsSenior Medical DirectorGeneral Dynamics Information Technology Theodore Spencer,M.J.Secretary of the TFAH Board of DirectorsCo-FounderTrust for Americas HealthCynthia M.Harris,Ph.D.,DABTDirector and ProfessorInstitute of Public Health,Florida A&M UniversityDavid Lakey,M.D.Chief Medical Officer and Vice Chancellor for Health Affairs The University of Texas SystemOctavio Martinez Jr.,M.D.,MPH,MBA,FAPAExecutive Director Hogg Foundation for Mental Health,The University of Texas at Austin John A.Rich,M.D.,MPHDirectorRUSH BMO Institute for Health Equity,Rush University Systems for HealthEduardo Sanchez,M.D.,MPHChief Medical Officer for Prevention and Chief of the Center for Health Metrics&Evaluation American Heart Association Umair A.Shah,M.D.,MPHSecretary of HealthWashington State Department of HealthVince Ventimiglia,J.D.Chairman of Board of Managers Leavitt PartnersTFAH LEADERSHIP STAFFJ.Nadine Gracia,M.D.,MSCEPresident and CEOTekisha Dwan Everette,Ph.D.,MPA,MPH,CPHExecutive Vice PresidentStacy MolanderChief Operating OfficerREPORT AUTHORSMolly Warren,S.M.Senior Health Policy Researcher and AnalystTrust for Americas HealthMadison WestGovernment Relations ManagerTrust for Americas HealthCONTRIBUTORSBreanca Merritt,Ph.D.Director of PolicyTrust for Americas HealthMichelle DelFavero,MOT,MPH ConsultantVinu Ilakkuvan,DrPHConsultantSarah Ketchen Lipson,Ph.D.,Ed.M.Associate ProfessorBoston University School of Public HealthPrincipal Investigator The Healthy Minds NetworkMelissa Maitin-Shepard,MPPConsultantREVIEWERSAngie Tagtow,DrPH,M.S.,R.D.,LDFounder and Chief Strategistkta StrategiesAmy Lazarus Yaroch,Ph.D.Executive DirectorCenter for Nutrition&Health ImpactAcknowledgmentsTrust for Americas Health is a nonprofit,nonpartisan public health policy,research,and advocacy organization that promotes optimal health for every person and community and makes the prevention of illness and injury a national priority.The State of ObesityTABLE OF CONTENTSSEPTEMBER 2024Table of ContentsACKNOWLEDGMENTS.2TABLE OF CONTENTS.3LIST OF ACRONYMS AND ABBREVIATIONS.4INTRODUCTION.5SECTION I:SPECIAL FEATURE:THE FOOD ENVIRONMENT AND SYSTEMS.10A.Changing Food Supply and Ultra-Processed Foods.11B.Local Food Systems and Community Access.12C.Advertising as a Commercial Determinant of Health.13D.Policy Progress and Opportunities.14Q&A with Erin McAleer of Project Bread,Boston,MA.18SECTION 2:OBESITY-RELATED DATA AND TRENDS.21A.Trends in Adult Obesity.21I.State trends(BRFSS).22II.Demographic trends .24B.Trends in Youth Obesity.29I.National Youth Obesity Rates(NHANES).30II.Young WIC Participants,Ages 2 to 4(WIC Program Data).30III.Obesity Rates in Children and Teenagers,Ages 6 to 17(National Survey of Childrens Health).31IV.High School Obesity Rates(YRBS).32SECTION 3:OBESITY-RELATED POLICIES AND PROGRAMS.34A.Economics of What We Eat and Drink.34I.Fiscal and Tax Policies that Promote Healthy Eating:Beverage Taxes,Healthy Food Financing Initiative,and New Markets Tax Credit.34B.Nutrition Assistance,Standards,and Education.38I.Federal Hunger and Nutrition Assistance:SNAP,Child Nutrition Programs,and WIC.38II.Childcare and Education Settings:Head Start,Farm to Educational Settings,Local School Wellness Policies,and Smart Snacks in Schools.48III.Dietary Guidelines,and Packaged Food and Menu Labels.50C.Community Policies and Programs.53I.Built Environment:Community Design,Transportation,and Land Use;Housing Impacts;Safe Routes to Schools.53II.CDC State and Community Initiatives.55D.Healthcare Coverage and Programs.61I.Anti-Obesity Medications.61II.Medicare and Medicaid.62III.Healthcare and Hospital Programs:Food is Medicine,Medical Education,Community Benefits Programs,and Breastfeeding Programs.64SECTION 4:RECOMMENDATIONS.67APPENDIX:OBESITY-RELATED INDICATORS AND POLICIES BY STATE.77REFERENCES.83View this report online at tfah.org/stateofobesity2024.34TFAH tfah.orgLIST OF ACRONYMS AND ABBREVIATIONSAddressing Conditions to Improve Population Health program ACTionAmerican Indian and Alaska Native AI/ANBehavioral Risk Factor Surveillance System BRFSSBody Mass Index BMICenters for Disease Control and Prevention CDCCenters for Medicare&Medicaid Services CMSChild and Adult Care Food Program CACFPChild Tax Credit CTCCommunity Eligibility Provision CEPCommunity Health Needs Assessment CHNADietary Guidelines Advisory Committee DGAC Division of Nutrition,Physical Activity,and Obesity DNPAOEarly Care and Education ECEElectronic Benefits Transfer EBTFederal Poverty Level FPLFiscal Year FYFood is Medicine FIMFresh Fruit and Vegetable Program FFVPFront-of-package FOPFruit and Vegetable Cash Value Voucher CVV Glucagon-like Peptide-1 GLP-1 Good Health and Wellness in Indian Country program GHWICGus Schumacher Nutrition Incentive Program GusNIPHealth-Related Social Needs HRSN Healthy Food Financing Initiative HFFIHigh Obesity Program HOPIn Lieu of Services ILOSNational Diabetes Prevention Program National DPP National Health and Nutrition Examination Survey NHANESNational School Lunch Program NSLPNative Hawaiian and other Pacific Islander NHOPINew Markets Tax Credit NMTCPresidents Council on Sports,Fitness&Nutrition PCSFNPreventive Health and Health Services Block Grant PHHSRacial and Ethnic Approaches to Community Health program REACHSafe Routes to School SRTSSchool-Based Interventions to Promote Equity and Improve Health,Academic Achievement,and Well-Being of Students Healthy Schools School Breakfast Program SBPSNAP EBT Modernization Technical Assistance Center SEMTAC SNAP-Education SNAP-EdSocial Determinants of Health SDOHSpecial Milk Program SMPSpecial Supplemental Nutrition Program for Women,Infants,and Children WICState Physical Activity and Nutrition SPAN Summer Electronic Benefits Transfer for Children Summer EBT/SUN Bucks Summer Food Service Program SFSPSupplemental Nutrition Assistance Program SNAPTrust for Americas Health TFAHU.S.Department of Agriculture USDAU.S.Department of Health and Human Services HHSU.S.Department of Transportation DOTU.S.Food and Drug Administration FDAU.S.Preventive Services Task Force USPSTFUSDAs Food and Nutrition Service FNSWorld Health Organization WHO Youth Risk Behavior Survey YRBSThe State of ObesityINTRODUCTION SEPTEMBER 2024INTRODUCTION Introduction Obesity in the United States is a serious and growing public health threatwith rising rates across states,ages,sexes,racial/ethnic groups,and income over decades.1,2,3,4,5,6 The causes and drivers of obesity are complex and multifactorial,and include national nutrition and dietary trends as well as social and economic conditions that influence the health and well-being of Americans(e.g.,limited access to affordable,nutritious food and physical activity,poverty,and discrimination).7,8,9 New 2023 state-level data from the Behavioral Risk Factor Surveillance System(BRFSS)show considerable variation in state-level adult obesity rates in 2023 and in state-level trends from 2022 to 2023.Long-term trends continue to show increasing rates of adult obesity across the country(see Figure 1).10,11 051015202530354045502011 2012 2013 2014 2015 2016 2017 2018 2019 2020 2021 2022 2023States with Adult Obesity Rates 3035 Percent35% Source:TFAH analysis of BRFSS data12Note:Data were not available for two states in 2023,one state in 2021,and one state in 2019.FIGURE 1:Number of States with Adult Obesity Rates At 30 Percent or Higher,2011202356TFAH tfah.orgWHY DOES TFAH FOCUS ON OBESITY?Obesity and other diet-related chronic diseases have been increasing across the United States for decades.They pose a serious public health threat as obesity is associated with a range of physical and mental health conditions at the population-level,higher mortality,as well as higher healthcare costs and productivity losses.18,19,20(1)Obesity increases the risk of a range of diseases and conditions for adultsincluding higher rates of type 2 diabetes,high blood pressure,heart disease,stroke,COVID-19,arthritis,depression,sleep apnea,liver disease,kidney disease,gallbladder disease,pregnancy complications,and many types of cancerand an overall risk of higher mortality.21,22,23,24,25,26,27,28,29,30,31,32,33,34(2)Children with obesity are also at greater risk for certain diseases,like type 2 diabetes,high blood pressure,and depression,and a child with obesity is more likely to have obesity as an adult.35,36,37,38,39 Children with obesity also have a higher risk of hospitalization and severe illness from COVID-19.40(3)Individuals with obesity have higher medical costs than lower-weight individuals.A 2021 study found that obesity accounted for$170 billion in higher medical costs annually in the United States.41 This includes billions in extra costs to the Medicare and Medicaid programs.42,43 Indirect,or nonmedical,costs from obesity also run into the billions due to missed time at school and work,lower productivity,premature mortality,and increased transportation costs.44,45 FAST FACTS ABOUT OBESITY IN THE UNITED STATES National Adult Obesity Rate,20172020:41.9 percent Change in Adult Obesity Rate from 19992000 to 20172020:37 percent increaseNational Youth Obesity Rate,20172020:19.7 percentChange in Youth Obesity Rate from 19992000 to 20172020:42 percent increaseSource:NHANES46 Note:20172020 is latest available data.Number of States with Adult Obesity Rates Above 35 Percent,2023:23Number of States with Adult Obesity Rates Above 35 Percent,2013:2Source:BRFSS.47In addition to obesity,diabetes rates have been increasingalong with other diet-related cardiovascular diseases and cancersand are among the leading causes of death each year in the United States.13,14 Nutrition and diet quality are linked to many chronic diseases and overall mortality,yet in recent decades,there have been increases in ultra-processed food consumption and decreases in fruit and vegetable consumption.15,16,17 In this years State of Obesity report,Trust for Americas Health(TFAH)presents a special feature that explores these consumption changes and the larger food environment and systems in the United States that shape Americans dietary intake every dayincluding the national food supply,variation in local food systems and access by community,the influence of advertising,and the effects of policy and regulatory efforts,as well as future opportunities for policymakers to consider.In addition to the special feature,this report includes a section that reviews the latest data available on adult and childhood obesity rates(see page 21),a section that examines key current programs and emerging policies(page 34),and,finally,a section that outlines recommended policy actions(page 67).7 TFAH tfah.orgSUMMARY OF 2024 STATE OF OBESITY RECOMMENDATIONSTFAH offers recommendations for federal,state,and local policymakers and other stakeholders each year.Our goalensuring that every community can support healthy lifestyles for allrequires a systems-level approach,including public policy changes across key sectors to ensure healthy choices are available and easy for everyone.A systems approach includes reducing longstanding structural and historic inequities,targeting obesity prevention programs to communities with the highest needs,and scaling and increasing evidence-based initiatives that create the healthy community environments to support optimal health and promote healthy behaviors and outcomes.See below for a summary of TFAHs recommendations;the full list of recommendations begins on page 67.1.Advance health equity by strategically dedicating federal resources to efforts that reduce obesity-related disparities and related conditions by:l Increasing funding for Centers for Disease Control and Prevention(CDC)chronic disease and obesity prevention programs,including State Physical Activity and Nutrition,Racial and Ethnic Approaches to Community Health,and Healthy Tribes;l Expanding the Social Determinants of Health program at CDC to support multisector collaborations to address upstream drivers of chronic disease;l Instituting economic policies that reduce poverty at a population level;l Prioritizing health equity in planning and decision-making at federal agencies;andl Adapting federal grantmaking practices to ensure that the community-based organizations that are best able to conduct obesity prevention activities can navigate federal funding mechanisms.2.Decrease food and nutrition insecurity while improving nutritional quality of available foods by:l Guaranteeing the Healthy School Meals for All program and,in the interim,encouraging Community Eligibility Provision participation;l Maintaining the progress of the final 2024 school nutrition meal standards,and working to fully align them with science-based recommendations;l Maintaining eligibility,increasing the value of benefits,and ensuring there are no new participation barriers in the Supplemental Nutrition Assistance Program(SNAP);l Improving diet quality in SNAP through voluntary pilot programs,and supporting programs that promote and incentivize healthy eating,like SNAP-Ed and the Gus Schumacher Nutrition Incentive Program;l Expanding access to the Special Supplemental Nutrition Program for Women,Infants,and Children for young children and postpartum women,and ensuring robust funding for the expanded fruit and vegetable benefit increase;l Creating a mandatory front-of-package label for packaged foods to help consumers make informed choices;l Bolstering the Child and Adult Care Food Program by allowing a third meal service option,increasing reimbursements,simplifying administration,and continuing funding for nutrition and wellness education;l Expanding support for programs that promote maternal and child health,including breastfeeding support;l Improving the nutrition quality of the food that government agencies provide by uniformly implementing the Food Service Guidelines for Federal Facilities;8TFAH tfah.orgl Incentivizing healthy food options,like adding healthful corner stores,and supporting community gardens and farmers markets through community design;and l Increasing outreach to eligible families to apply for school meals and other nutrition assistance programs.3.Change the marketing and pricing strategies that lead to health disparities by:l Closing tax loopholes and eliminating business cost deductions for advertising of unhealthy food and beverages to children on television,online,and places frequented by children;l Discouraging unhealthy food and drink options by enacting sugar-sweetened beverage taxesand using the revenue to reduce health and socioeconomic disparities;l Incorporating strategies into local wellness policies that reduce unhealthy food and beverage marketing and advertising to children and adolescents,like by prohibiting coupons,sales,and advertising around schools;and l Studying the impacts of food marketing in the digital space on young children.4.Make physical activity and the built environment safer and more accessible for all by:l Increasing federal education funding to support health and physical education,as well as programs that promote social-emotional learning and improve health outcomes for children;l Codifying and funding the update of the Physical Activity Guidelines for Americans every 10 years;l Boosting funding for active transportation projects like pedestrian and biking infrastructure and recreational trails in addition to adding flexibilities and increasing technical assistance to ensure all communities are able to access funding;l Making physical activity safer by making Safe Routes to Schools,Vision Zero,Complete Streets,and non-infrastructure projects eligible under the Highway Safety Improvement Program;l Identifying innovative methods for conducting physical education and prioritizing physical activity during schooltime;l Working locally to make community spaces more conducive and safer for physical activity,active transportation,and outdoor play;l Adopting and implementing Complete Streets principles;and l Encouraging outdoor play and activity for children via state and federal programs and additional park development for communities most in need.5.Work with the healthcare system to close disparities and gaps in clinic-to-community settings by:l Increasing access to health insurance coverage by expanding Medicaid and making marketplace coverage even more affordable;l Clarifying to health insurers that obesity-related preventive healthcare services must be covered with no patient cost-sharing like all other grade A or B U.S.Preventive Services Task Force recommendations as required by current law,and ensuring continued free preventive coverage if legal challenges alter the current requirements;l Expanding the capacity of healthcare providers and payers to screen and refer individuals to social services and care coordination,to sufficiently reimburse and increase capacity for social services,and to better integrate social-needs data into medical records;l Re-implementing CDCs Childhood Obesity Research Demonstration program to inform how to translate U.S.Preventive Services Task Force recommendations into lifestyle and clinical interventions;l Addressing root causes of health disparities by enacting the Health Equity and Accountability Act;l Requiring Medicare and Medicaid to cover obesity-related services,such as obesity and nutritional counseling and treatments,and providing additional funding to offer these services;l Prioritizing social and structural determinants of health in communities with high levels of obesity through community-directed goals and strategies,as well as evidence-based programs;andl Enabling Medicaid waivers to allow community-based organizations to be reimbursed for chronic disease prevention activities,to further incentivize cross-sector collaboration.9 TFAH tfah.orgWHAT IS OBESITY AND BMI?Public health and healthcare sectors define“obesity”as a disease where an individuals body fat and body-fat distribution exceed the level considered healthy.48,49 Body mass index(BMI)is a metric often used as a proxy for body fat because it is correlated with cardiometabolic risk,and it is simple and inexpensive to determineno invasive tests,specialized equipment,or prior diagnoses requiredand thus more universally available.BMI is a useful screening measure at the individual level to help clinicians decide which patients need additional assessment for chronic disease,and a useful population health measure to assess the distribution of BMI in populations so that resources can be targeted to certain geographic areas,groups,or others disproportionally affected by low or high weight for health.50Using BMI as a measure of obesity has several important considerations.First,the formula for calculating BMI as originally designed is not representative of all peoples.51 Secondly,BMI does not perfectly correlate with body fatfor example,muscular individuals often have lower body fat than their BMI would suggestor risk for chronic disease;though BMI does correlate as well or better than other noninvasive,widely available measures.52 For individuals,a more holistic understanding of family/personal history,lifestyle factors,body fat,and body fat distribution are important to assessing cardiometabolic risk.On a population level,the risk that occurs at different BMIs vary by sex and race/ethnicity.For example,certain populations of Asian Americans have higher risks of cardiometabolic diseases at lower BMIs,and Black Americans have lower risks at higher BMIs.Some researchers have suggested adjusting BMI thresholds to estimate cardiometabolic risks more accurately in different populations.53The use of BMI by the public health and healthcare sectors has been a recent topic of discussionincluding a focus on its use as a diagnostic measure in the medical setting,as well as its historic,discriminatory origins and modern connection with weight-based stigma.54,55 In June 2023,the American Medical Association House of Delegates voted to adopt a new policy that outlines the limitations of BMI as an individual-level metric,supports additional education for physicians around BMI,and recommends BMI be used in conjunction with other measures in a clinical setting.56BMI is calculated by dividing a persons weight(in kilograms)by their height(in meters)squared.The BMI formula for measurements in pounds and inches is:For adults,BMI is associated with the following weight classifications:Medical professionals measure childhood obesity differently,comparing a childs BMI with children of the same age and sex in a reference population that accounts for typical changes during growth and development.A childs BMI is expressed as a percentile relative to children from the reference population of the same age and sex based on growth charts developed by CDC using nationally representative height and weight data from American children from 1963 to 1965 and from 1988 to 1994.57 BMI=(Weight in pounds )x 703(Height in inches)x(Height in inches)BMI LEVELS FOR CHILDREN AGES 2-19BMI LevelWeight ClassificationBelow 5th percentileUnderweight5th to 85th percentileHealthy weight85th to 95th percentileOverweight95th percentile and greaterObesity120 percent of the 95th percentile or greater OR a BMI of 35 or aboveSevere ObesityBMI LEVELS FOR ADULTS AGES 20 AND OVERBMI LevelWeight ClassificationBelow 18.5Underweight18.5 to 25Healthy weight25 to 30Overweight30 and aboveObesity 40 and above Severe ObesityThe State of Obesity SECTION 1:SPECIAL FEATURE:FOOD ENVIRONMENT AND SYSTEMSSECTION 1:SEPTEMBER 2024SPECIAL FEATURE:The Food Environment and SystemsNutrition and diet quality are essential components of a healthy lifestyle,and healthy eating(e.g.,consuming more fruits and vegetables)is associated with lower rates of obesity,other chronic diseases,cancers,and mortality.58,59,60,61,62,63,64 The food that people eat depends on their surrounding food environmentdefined by United Nations Committee on World Food Security as“the physical,economic,political and socio-cultural contexts in which consumers engage with the food system to make their decisions about acquiring,preparing and consuming food.”65 In other words,consumption patterns are influenced systematically by a wide range of factorslike availability,accessibility,affordability,palatability,and desirabilitywhich are,in turn,shaped by a variety of local,state,federal,and international factors.This section looks at several components that affect food consumption patterns in the United States:the changing national food supply,variation in local food systems and access within communities,the influence of advertising and other commercial determinants of health,and the effects of policy and regulatory efforts,as well as opportunities for policymakers to make the food environment healthier and more conducive to nutritious eating.There are many additional factors that affect food availability and costslike local food production and farming,agricultural subsidies,climate change impacts,and supply-chain disruptionsbeyond the scope of this special feature.1011 TFAH tfah.orgA.CHANGING FOOD SUPPLY AND ULTRA-PROCESSED FOODSThere have been problematic changes in the U.S.diet over the last few decades,with more consumption of food made away from home,reduced consumption of minimally processed and unprocessed foods,and increased consumption of ultra-processed foods,which have little intact natural ingredients but are lower cost,readily accessible,convenient,preserved for extended shelf life,and hyper-palatable.66,67,68,69,70,71,72,73 A 2023 study estimated that almost three-quarters of the food supply in the United States was ultra-processed.74 Over the past decade,there has been a growing body of evidence about the connection between the consumption of ultra-processed foods and a variety of adverse health outcomesincluding an increased risk of obesity,overweight,and abdominal obesity;type 2 diabetes;overall cancer risk and breast cancer risks;cardiovascular disease;anxiety and other mental disorders;and overall mortality.75,76,77,78,79,80 The evidence includes meta-analyses combining findings from multiple studies and dose-response evidence(i.e.,higher ultra-processed food consumption corresponds to worse health outcomes),both of which point toward a causal relationship.81,82,83,84 A recent British Medical Journal meta-analysis also found that within the group of ultra-processed foods,some may be worse than others,with especially strong associations between higher mortality and consumption of ultra-processed meat,poultry,and seafood.85 Other studies provide insights into how ultra-processed foods may affect health by looking at how ultra-processed foods change nutrition and consumption habits within daily life.For example,several studies find consumption of ultra-processed foods are linked with lower nutritional quality.A 2021 meta-analysis found that higher ultra-processed food consumption correlates with lower consumption of unprocessed(e.g.,fruit and vegetables)and less-processed foods and worse nutritional quality of diet,including“an increase in free sugars,total fats,and saturated fats,as well as a decrease in fiber,protein,potassium,zinc,and magnesium,and vitamins A,C,D,E,B12,and niacin.”86 Another study found that ultra-processed foods were responsible for 90 percent of added sugar calories consumed.87 Additionally,a randomized controlled study from researchers at the National Institutes of Health(NIH)matched nutritional profiles for two diets(ultra-processed and unprocessed)and found immediate changes in consumption habits and diet quality among participants.The participants placed on the ultra-processed diet ate about 500 additional calories per day compared with those on the unprocessed diet.Participants on the ultra-processed diet also gained an average of 0.9 pounds after two weeks;by contrast,participants on the unprocessed diet lost an average of 0.9 pounds after two weeks.88 The study author notes:“Though we examined a small group,results from this tightly controlled experiment showed a clear and consistent difference between the two diets.This is the first study to demonstrate causalitythat ultra-processed foods cause people to eat too many calories and gain weight.”8912TFAH tfah.orgB.LOCAL FOOD SYSTEMS AND COMMUNITY ACCESSEating healthy depends on being able to get healthy foods near home,as well as at workplaces,schools,childcare,and other care settings.Having healthy food at home depends on availability,accessibility,and affordability in local communities as well as on individual/family circumstances.Local availability of a variety of healthy foods that meet the preferences and needs of local shoppersincluding items like healthy prepared foods,ready-to-eat fruit and vegetables,and culturally appropriate foodsis a critical starting point to healthy eating,whether it takes the form of a full-service grocery store,farmers market,and/or other well-stocked store.Not all Americans have equal availability of healthy foods locally.Longstanding societal challenges and equity issues,like structural racism and poverty,shape community context and available choices around healthy food.90,91 For decades,research has found lower income areas and areas with more Black residents have fewer grocery stores and less healthy food access.92 Rural residents also experience some unique challenges,including areas with extremely limited food retailers in local areas.(See page 34 for more on federal programs aimed at increasing access to healthy food in under-resourced areas.)Additionally,store or market accessibilitythat is,if the store or market is easy to get to(e.g.,close to shoppers,accessible via active or public transportation,etc.)and has convenient hoursis important.For example,if a farmers market is the main source of quality,varied,or affordable fresh fruits and vegetables in a neighborhood but is only open once a week and not year-round,it may not actually be accessible depending on someones work,school,or childcare schedule.(See page 53 for more on the importance of the built environment and active transportation.)Finally,affordability of healthy foods can be a major barrier for many Americans.Healthy foods are generally more expensive,and research has found that individuals with lower incomes tend to eat a less nutritious diet due to the higher cost.93,94,95,96 In 2022,12.8 percentor 17 millionof U.S.households were food insecure(i.e.,not having enough food for an active,healthy life for all household members).97 Some groups are more likely to have food insecurity than others,including households with children(17.3 percent food insecure),Black households(22 percent food insecure),and Hispanic households(21 percent food insecure)in 2022.98 Food insecurity also varies by urbanization,with large cities(15.3 percent food insecure)and rural areas(14.7 percent food insecure)having higher rates of food insecurity compared with suburban areas(10.5 percent food insecure).99Increases in food prices in the last few yearsdue to inflation,food-chain supply,and other causesfurther underscores the importance of affordability of foods and the critical role of safety-net food and nutrition programs,like the Supplemental Nutrition Assistance Program(SNAP),the Special Supplemental Nutrition Program for Women,Infants,and Children(WIC),school meals,and food banks and pantries.100,101 Ensuring these programs support healthy eating by providing nutritious options and/or providing sufficient benefits to enable healthy purchases is also key.For example,in 2021,the U.S.Department of Agriculture(USDA)modernized the Thrifty Food Planwhich estimates the cost of a healthy diet and is used to calculate SNAP benefitsto better reflect current food costs and eating habits.102 As a result,the average SNAP benefit increased by 21 percent beginning in October 2021.103 Prior to these changes,a 2021 survey found that 61 percent of SNAP recipients said the cost of nutritious foods was a barrier to eating a healthy diet.104 Evaluations of the effects of the Thrifty Food Plan adjustment are ongoing,with early findings suggesting the plan may have helped prevent higher food insecurity related to recent inflation.105(See page 38 for more on food and nutrition support programs.)In addition to considering availability,accessibility,and affordability of healthy food options as a standalone concern,it is also important to compare it with the number,variety,cost,and convenience of local alternative food options.Research suggests that the density of stores that sell fast food and junk food as compared with healthier food is a more important single factor than having a local grocery store.106,10713 TFAH tfah.orgC.ADVERTISING AS A COMMERCIAL DETERMINANT OF HEALTHDecisions and actions by food and beverage companies and related businesses shape the food available across the nation and influence purchasing decisions,preferences,and consumption patterns of consumers.These kinds of decisions and actions by private-sector actors which“affect peoples health,directly or indirectly,positively or negatively”are collectively called commercial determinants of health.108 For example,commercial determinants of health can include what kinds of products to make and distribute;the price and packaging of products;the specific ingredients,recipes,and nutrition of the various products;and the marketing and advertising of these productsas all shape and influence consumption.Likewise,grocery store decisions on stocking,placement,and pricing are also important factors.Advertising is one major way companies influence and encourage consumption.The food and beverage industry spends billions of dollars every year on advertising in the United Stateswith an estimated 80 percent of advertising promoting unhealthy choices,such as fast food,sugary drinks,and candy.109 These marketing messages are communicated through traditional television advertising,product packaging,and increasingly via digital platforms.110 A recent meta-analysis of the impact of food and beverage marketing on childrens and adolescents eating behavior found that a variety of marketing mediumsincluding television,digital,and package marketingare associated with significant increases in food intake,choice,preference,and purchase requests.111As with television,food advertising on digital platforms is highly prevalent and an area that the public health field has been raising as an emerging issue in needing greater attention.In 2021,food and beverage companies spent$5.5 billion just on search engine marketing and$3.5 billion on social media marketing.112 Like with television,this advertising is also dominated by ads for unhealthy products.113 Another new and concerning aspect of digital food marketing is social media influencer marketinga$13.8 billion industry and growing.114 A recent study of popular“made-for-kids”child-influencer YouTube videos found that two-thirds of the videos featured food and 38 percent contained a branded food or beverage,of which three-quarters were candy,sweet or salty snacks,sugary drinks,or ice cream.115 A second study found that children who viewed influencers promoting unhealthy snacks increased their immediate intake of unhealthy food,while influencer promotion of healthy food had no effect.116An additional concerning aspect of food marketing is the disproportionate focus on marketing for unhealthy foodsincluding candy,sugary drinks,and fast foodon Black and Hispanic consumers.Advertising for unhealthy food accounted for three-quarters of television ad spending directed at these demographic groups.117 Another study found that Black youth see approximately 75 percent more television ads for fast food than their white peers.118 A further example of racial inequities in advertising is the particular focus on the Hispanic community in advertising for“toddler milk”products similar to baby formula that have added sugars and are not recommended by the American Academy of Pediatrics or Dietary Guidelines for Americans.119,120 These drinks are often cross-promoted with infant formula,resulting in consumer confusion and the dangerous practice of feeding these drinks to infants,even though they do not meet infants unique nutritional needs.121 A 2021 study found that Hispanic parents are more likely to have purchased toddler milk than non-Hispanic parents.122 14TFAH tfah.orgD.POLICY PROGRESS AND OPPORTUNITIESThe food and beverage industry,food stores,and other related businesses shape the food supply and environment in the United States in many critical ways.These companies also work within a system guided by policies and standards at the national,state,and local levels.In recent decades,there have been important steps to improve food quality and nutrition through different approaches.Some have focused on improving the nutritional quality of the food supply and diets,others have improved nutrition labels to better enable consumer decision-making,and others have improved nutrition for certain populations through updated standards and expanded access.Examples of these policy steps from the last decades are below.Improving nutrition quality of the food supply and dietsl Trans fats:Eating artificial trans fats(also called partially hydrogenated oils)increases bad cholesterol,reduces good cholesterol,and has been linked to an increased risk of heart disease,stroke,and type 2 diabetes.123 In 2015,the U.S.Food and Drug Administration(FDA)re-classified artificial trans fats as unsafe and prohibited it as a food additive,with final compliance taking effect in 2021.124 l Sodium:High sodium consumption increases risks for high blood pressure,heart disease,and stroke;average sodium intake for adults in the United States is well above recommended limits;and more than 70 percent of sodium intake is from packaged and prepared foods.125,126,127 To help improve nutrition,reduce preventable diet-related chronic disease,and reduce excess sodium intake,FDA took an important step in 2021 and issued voluntary guidance to the food industry on sodium-reduction targets by 2024.The goal is a gradual reduction of sodium in commercial recipes and production.128 An evaluation of the first two years showed promising decreases in sodium levels,particularly in the combined packaged and restaurant food categories.129 In August 2024,FDA issued draft guidance on the second phase of voluntary sodium-reduction targets,which builds on the initial targets.130l Added sugar:Sweetened beverages are the top source of added sugars consumed in the United States.131 Over the last decade,several cities have implemented taxes of 1 to 2 cents per ounce on sugar-sweetened drinks to reduce added sugar consumption,including:Berkeley,California(2015);Oakland,California(2017);Philadelphia,Pennsylvania(2017);Seattle,Washington(2018);and San Francisco,California(2018).These taxes have reduced sales and consumption of sugary beverages in the short and long term.132,133,134,135,136,137l Healthy food access:Access to nutritious food is a critical step to healthy eating.Some local governments have improved access through a variety of policies,including encouraging:(1)new grocery stores to open by offering tax incentives and grant programs,particularly in under-resourced areas;15 TFAH tfah.org(2)existing convenience stores to carry healthier food options through grants and other programs;and(3)more farmers markets/stands in communities by opening city property to vendors,assisting with permitting,and conducting advertising.Research shows that 29 percent of communities have at least one of these policies,which is the same as the previous survey in 2014.138 Federally,there are a number of initiatives to increase healthy food access.For example,the Healthy Food Financing Initiative provides grant funding and technical assistance for programs that increase access to healthy food in under-resourced communities,helping to reduce food insecurity,revitalize low-income neighborhoods,and build a more equitable food system.Empowering consumers through better labeling and education l Nutrition Facts labels:Clear and actionable information is key to making nutrition labels accessible and helpful to consumers as they make food-purchasing decisions.Major updates to packaged food labels went into effect in 20202021,making them easier-to-read,providing more accurate serving sizes,and including added sugars.139,140 One study found that those who read the new added-sugar information on nutrition labels made healthier food choices.141l Restaurant menu labeling:Since the 1970s,Americans have increasingly eaten food prepared away from home,making accessing nutrition information in restaurants increasingly important.142 Requirements for menus in large chain restaurants to include calorie counts went into effect in 2018.143 A study found that the new rule led to a decrease in average calories,saturated fat,and sugar in fast food meals.144l Dietary Guidelines by life stage:Nutrition requirements vary by life stage,and understanding the different needs is a necessary to meet them.USDA and the U.S.Department of Health and Human Services(HHS)published Dietary Guidelines for Americans,20202025,which includes science-based recommendations on healthy eating for all life stages,including infancy,toddlerhood,childhood,adolescence,pregnancy,lactation,and older adulthood.This was the first time the Guidelines included recommendations for infants and toddlers.145l Family education programs:About one in five American youth have obesity,a figure that has been increasing over decades.146,147 The Centers for Disease Control and Prevention(CDC)Family Healthy Weight Programs are comprehensive,family-based lifestyle-change programs that include children who are overweight or have obesity and their families.The programs are offered in healthcare,community,or public health settings and focus on education and skill-building around nutrition and physical activity to help families live a healthy lifestyle.Evaluations of the Family Healthy Weight Programs have found that they have been successful in reducing or stabilizing a childs weight,as well as a range of other positive outcomes,including reduced parent or caregiver weight;improved nutrition,physical activity,and associated healthy behaviors;and improved metabolic markers.148 16TFAH tfah.orgRaising nutritional quality and access in schools,institutions,and nutrition programs l Expanding nutrition programs in schools and care facilities:Millions of children and adults attend childcare centers,afterschool programs,adult daycare centers,and shelters every year.149 The 2004 WIC Reauthorization law expanded the Fresh Fruit and Vegetable Program(FFVP),the Summer Food Service Program,and the Child and Adult Care Food Program(CACFP)to more schools,programs,and centers.150 FFVP was further expanded nationwide in 2008.151 Research shows that FFVP increases students consumption of fresh produce and is associated with a meaningful reduction in obesity for participating children.152,153,154,155l School meal nutrition standards:About 30 million children across the country eat school meals each day.156 The Healthy,Hunger-Free Kids Act of 2010 strengthened nutritional requirements for USDA Child Nutrition Programs,increased funding for school meal programs,strengthened school wellness policy requirements,and created the Community Eligibility Provision(CEP),which allows schools to provide universal free school meals in high-poverty communities.157 Research finds that new nutrition requirements reduced the prevalence of obesity among school lunch participants.158 Some of these provisions have been expanded and updated in recent years.In September 2023,USDA changed the threshold for CEP to expand the option to more high-need communities.159 And,in April 2024,USDA issued a final rule updating standards for Child Nutrition Programs to more closely align with the current Dietary Guidelines for Americans and includes changes like limits on added sugars and sodium.160 l CACFP nutrition standards:More than 4 million adults and children eat at childcare centers,afterschool programs,adult daycare centers,and shelters every year.161 A federal rule aligning CACFP meal patterns with dietary guidelines as required by the Healthy,Hunger-Free Kids Act went into effect in 2017.162 An evaluation of CACFP found that participation in the program may reduce the prevalence of obesity.163l Healthy School Meals for All:Universal school meal programs around the world have been found to be positively associated with increased food security and improved nutrition.164 In response to an increase in food insecurity among households with children during the COVID-19 pandemic,Congress authorized the USDA to provide waivers for all schools to offer free universal school meals from March 2020June 2022.165 During this time,participation in the National School Lunch Program increased while stigma around the program decreased.166 Since 2022,several states(California,Colorado,Maine,Massachusetts,Michigan,Minnesota,New Mexico,and Vermont)passed laws establishing free school meals for all students.167,168,169,170 Preliminary research suggests that universal school meals may decrease obesity prevalence among students.171l WIC food package:More than 6 million pregnant women,mothers,infants,and children participate 17 TFAH tfah.orgin WIC each year.172 A federal rule overhauling the WIC food packages went into effect in 2009,adding fruits,vegetables,and whole grain products as well as incentives to promote breastfeeding.173 After these nutritional requirements were strengthened,obesity rates among children in the program declined.174,175 In April 2024,USDA issued a final rule updating WIC food package standards to better align with the current Dietary Guidelines for Americans and includes making permanent the enhanced Cash Value Benefit for fruit and vegetable purchases,and allowing for more flexibility in purchasing foods that meet cultural or personal preferences and dietary needs.176 These policies demonstrate that progress and improvement are possible through a variety of approaches and at different levels of government.The United States needs to continue to build on these policies and lessons learned to further shift the nations food environment towards a healthier food supply and better nutrition and healthy eating for all Americans.Addressing obesity is complex and requires multidimensional strategies and policies,with system and environmental changes,dynamic monitoring and evaluation mechanisms,and time and sustained investment and commitment for these changes to make a difference.Looking forward,there are additional promising policies currently being developed or enhanced.The 2022 White House Conference on Hunger,Nutrition,and Health led to the National Strategy on Hunger,Nutrition,and Health with the goal to end hunger and increase healthy eating and physical activity by 2030,so that fewer Americans experience diet-related diseases like diabetes,obesity,and hypertension.The whole-of-society strategy includes numerous federal government actions as well as more than 100 stakeholder commitments across private,nonprofit,and governmental sectors.177Key proposed federal policies include FDAs next set of improvements to food package labelingincluding front-of-package(FOP)nutrition labels that highlight key nutrition components and a“healthy”symbol to be used on foods that meet certain nutritional requirementsto help consumers make choices.In 2022,FDA issued a proposed rule updating the existing definition of“healthy”to align with current science-based Dietary Guidelines for Americans and has been conducting consumer research about FOP labels and“healthy”symbols to best meet shoppers needs.178,179 FDA has found many consumers often prefer simpler labels and,for consumers with less nutrition knowledge,symbols are particularly helpful in identifying healthy options.180,181Additional specific recommendations can be found in the Recommendations section beginning on page 67.18TFAH tfah.orgErin McAleer is the president and CEO of Project Bread,a position she has held since 2017.McAleer holds a masters degree in social work with a concentration in organizing,public policy,and administration from Boston College.TFAH:What does food insecurity look like in the communities you serve and how does Project Bread respond?Ms.McAleer:Project Bread is a food security organization.We serve all of Massachusetts.Our goal is not to just alleviate hunger and food insecurity now but to put solutions in place to permanently solve the hunger crisis.We focus both on direct service and on policy and systems change.In Massachusetts about 25 percent of families with children are food insecure.They struggle with the basic need of providing food for their family.We identify the barriers that families face and how to address them through work with community and legislative partners and through policy and systems change.Hunger is a systemic issue,so it requires systemic solutions.We have a number of programs to help families with their basic food needs.Every summer,we support meal sites all over the state through the Summer Eats program to make sure kids are able to access meals during the summer months,which can be a time of hunger for many kids.We run the Food Source Hotline,which serves about 20,000 households annually.People can call in toll-free and access a host of resources.And we have a healthcare partnerships program where hospitals and health centers are sending patients with food insecurity needs to us,and we work one-on-one with those patients for six months to ensure access to nutritious food and provide kitchen supplies and nutrition-related counseling and cooking classes.These programs are focused on meeting peoples immediate needs,but they are also designed to lead to more sustainable systems and policy change.Within the Summer Eats program,we are advocating for policies to make that program more accessible,and we are advocating for complementary policies.For example,Summer EBT electronic benefits transfer is now available in Massachusetts and 36 other states.On the healthcare side,we are connecting referred patients with federal nutrition programs,like the Supplemental Nutrition Assistance Program,SNAP,but we know they are not enough.SNAP benefits often run out before the end of the month,so we are also giving people grocery store gift cards while they are in the program.TFAH:Tell me more about the people you serve.What are the barriers to food security?Ms.McAleer:Economics is number one,not being able to afford food whether thats any food at all or food thats culturally relevant,that you know your family will eat,or thats healthy and nutritious.People are making trade-offs.Massachusetts is an incredibly expensive state to live in;the costs of housing and childcare are extremely high.Food often becomes the trade-off.When it comes to food choices,people are making economic decisions.Families want to buy fruits and vegetables and protein,but a box of cereal lasts a lot longer.Other factors include language barriers to accessing resources,perceived stigma around using federal nutrition programs,systemic racism and stereotyping in the public eye,and a lack of awareness about program eligibility and the available benefits.Q&A with Erin McAleer,Project Bread,Boston,Massachusetts19 TFAH tfah.orgWithin our healthcare program,we get people signed up for SNAP and WIC and provide grocery gift cards,and when we do,we can see that people are eating more fruits and vegetables.Both food security and nutrition security are rooted in economic security.It comes down to what a family can afford,and healthy food is more expensive.TFAH:Project Breads work is grounded in the concept of providing“more than food.”Please say more about that.Ms.McAleer:I could sit down with the smartest minds in America to discuss food insecurity,and most people would immediately go to donated food as the solution.Their question is how do we get more donated food to people who are hungry?I get that.But thats a challenging narrative because it ignores the systemic nature of this issue.When 25 percent of families in Massachusetts are food insecure its not just about donated food.We need much more large-scale,sustainable solutions.Weve been saying that for a long time and the pandemic really revealed it.Our“more than food”focus is meant to address the economic barriers to food security,but we also need to recognize other barriers.For example,some of the people we work with dont have a functioning kitchen or a refrigerator;dropping off a weeks supply of food for them to store and cook wont work for them.Transportation so people can get to a grocery store or a farmers market is also a key issue.Its really about changing the narrative in the anti-hunger space that the solution is more than donated food.Im not dismissing that donated food is part of it.Food banks and food pantries do incredible work.But weve seen this shift to food pantries being the front line in the narrative and they cant be.They dont have the bandwidth in terms of staff,funding,space,and equipment to do so.Food pantries should be for emergencies,not how people shop on a weekly basis.TFAH:This year,TFAHs State of Obesity report includes a special feature on the food environment.What are the most critical factors of any food environment,and how does a food environment impact food consumption and ultimately health?Ms.McAleer:Again,it all goes back to economics.Our program focus is at the individual level:Will people have access to food?Will it be affordable?That being said,we do try to influence the food environment.This summer,through the Summer Eats program,we are purposefully bringing breakfast and lunch to where kids areto pools,parks,playgrounds,and libraries.We believe our solution,a focus on giving people the tools to cope with the overall food environment,is more within reach right now.As opposed to changing the overall food environment.We support all the efforts and partners working on changing the larger food system,but we believe the more immediately solvable problem is making sure families have the economic resources to be able to purchase food in the same system that you and I shop in.Last year,we launched our Council of Experts with Lived Experience.The council is a first of its kind for a food security nonprofit.It convenes community members who offer insights on policy and communication for our programs and advocacy work,allowing us to hear the communitys perspective as we develop long-term solutions.TFAH:Are you encouraged by some of the action steps being taken by industry,government,and the healthcare sector?For example,front-of-package labeling,reduced added sugar in products,and the food-is-medicine movement.Ms.McAleer:We are spending a lot of our energy on the food-is-medicine movement,and were really excited about it.For 1520 years,weve been partnering with health centers because they are such an important access point.We know that people are more likely to disclose to their healthcare provider that they are dealing with food insecurity.Years ago,we set up a secure portal to pilot a program so healthcare providers could refer food-insecure patients to Project Bread.In 2020,we expanded the program to work one on one with patients for six months.We purposely focus on federal nutrition programs because of the scale of their impact.SNAP cards allow people to buy food of their choice.Kids are in school,so school meal programs are important.But overall,our goal is to provide people with sustainable resources and give them knowledge so when their six months in our program is completed,they have a functioning kitchen,and they have the knowledge that they learned in cooking classes or one-on-one through their work with a nutritionist or dietitian.In 2020,Massachusetts received a 1115 waiver from the federal government to allow the state to pay for food and nutrition support through the Medicaid program.This was an opportunity to greatly expand our services.Patients are referred to us through a secure portal;weve served over 12,000 patients since 2020.Patients are assigned a coordinator who speaks their language(we are really intentional about hiring program staff who speak the most common languages spoken in the state)who then connects them to SNAP and WIC,kitchen equipment,grocery store gift card programs,nutritional counseling,cooking classes,all of that.Healthcare is one of our biggest systems in the United States so integrating food access into it is powerful.Plus,it moves food security away from charity;giving people access to healthy food to improve healthcare outcomes and costs.When we think about solving hunger in Massachusetts,the food-is-medicine strategy is a main pillar because of the scale of the healthcare sector and because its a trusted access point.Our healthcare partnerships program is showing really positive outcomes.One of the findings from our program that really pleased us is that patients within the program are more compliant with their health plan.TFAH:If you had the opportunity to set federal policy in response to the hunger crisis what would you do?Ms.McAleer:In Massachusetts before the pandemic,the rate of household food insecurity was about 8.9 percent.In May of 2020,we saw it spike to well over 20 percent.Then the federal government put several programs in place,like universal free school meals,the SNAP program was expanded,and the childcare tax credit was put in place.All of these solutions put money in peoples pockets and food insecurity went down.But then as the public health emergency receded,these programs were rolled back,and we saw food insecurity rates start to increase.Hunger is a solvable problem if we strengthen the safety net through programs like the Child Tax Credit.We are proud that Massachusetts still has universal free school meals,but every state in the nation should.The SNAP program is the most effective solution to hunger,but its not strong enough:theres too many people who arent eligible who could use it,and the benefit runs out too quickly each month.In terms of SNAP,we need to make the benefits more robust,and we need more people to be able to access the program.Unfortunately,the discussion in Washington,DC,today is about limiting SNAP,not expanding it.Thats why we need the advocacy and partnership of those in healthcare to help demonstrate the benefits of giving people more purchasing power to food.Yes,theres a cost to it,but the healthcare cost savings associated with it is much greater.My goal is that any American,during a challenging time,doesnt have to worry about food.There would be a program to ensure that every family can go to the grocery store and put food on the table.Its a social safety net around food.It wont be forever but when youre going through a hard time,there would be a program you can access to help you afford food.Doing so would make America a stronger nation.We are not strong when 25 percent of our people are worrying about the basic need for food.We can do better.This interview was edited for length and clarity.20TFAH tfah.orgThe State of ObesitySECTION 2:OBESITY-RELATED DATA AND TRENDSSEPTEMBER 2024SECTION 2:21Section II:Obesity-Related Data and TrendsA.TRENDS IN ADULT OBESITY The National Health and Nutrition Examination Survey(NHANES)and the Behavioral Risk Factor Surveillance System(BRFSS)both show long-term trends of rising obesity rates among adults in the United States.182,183,184,185 The latest NHANES data,from 20172020,found the adult obesity rate passing 40 percent nationally.186 0510152025303540452017202020152016201320142011201220092010200720082005200620032004200120021999200019881994Source:NHANESFigure 2:Percent of Adults with Obesity,19882020NHANES usually releases data every two years.The 20192020 NHANES data collection,however,was disrupted by the COVID-19 pandemic as it uses in-person physical examinations to determine participants height,weight,and other physical measures.As of September 2024,at the time this report publication,the 20212023 NHANES survey has not yet been released,though it is expected later in fall 2024.187 This means the most recent NHANES data available is a combination of data from the 20172018 and 2019March 2020 surveys.Since BRFSS polls individuals about their health via telephone,data collection was able to continue through the pandemic,and the most recently released BRFSS is from 2023.188 This subsection provides the most recent data on adult obesity rates by state and demographics.22TFAH tfah.orgI.State trends(BRFSS)Recently released BRFSS data show considerable variation in state-level adult obesity rates in 2023 and in state-level trends from 2022 to 2023.Longer-term trends continue to show increasing rates.According to TFAHs analysis of the 2023 BRFSS data,states ranged from a low of 24.9 percent in Colorado and 23.5 percent in the District of Columbia to a high of 41.2 percent in West Virginia and 40.1 percent in Mississippi.Other key findings from the recently released data include:l Between 2022 and 2023,three states(Alaska,Arkansas,and Oregon)had statistically significant increases in their adult obesity rates.No states had statistically significant decreases in 2023,though 27 state plus the District of Columbia did have lower rates in 2023 as compared with 2022.l In the prior five years(20182023),28 states had statistically significant increases in their obesity rate.l In 2023,the adult obesity rate was at or above 35 percent in 23 states.In comparison,2013 was the first year that any states had an adult obesity rate higher than 35 percent(see Figure 1 on page 5).For additional state-level data from BRFSS,see charts on pages 2628.DATA SOURCES FOR ADULT OBESITY MEASURES1.The National Health and Nutrition Examination Survey(NHANES)is the source for the national obesity data in this report.As a survey,NHANES has two main advantages:(1)it examines a nationally representative sample of Americans ages 2 and older;and(2)it combines interviews with physical examinations.The limitations of the survey include a time delay from collection to reporting and a small survey size(approximately 5,000 interviews)that is not designed to be used for state or local data.189 The most recent NHANES data are from a combination of the 20172018 and 20192020 NHANES surveys.2.The Behavioral Risk Factor Surveillance System(BRFSS)is the source for state-level adult obesity data in this report.As a survey,BRFSS has three major advantages:(1)it is the largest ongoing telephone health survey in the world(approximately 450,000 interviews per year);(2)each state survey is representative of the population of that state;and(3)the survey is conducted annually,so new obesity data are available each year.190 The main limitation of the survey includes its use of self-reported weight and height,which result in underestimates of obesity rates due to peoples tendency to over-report their height and under-report their weight.Also,the sample sizes in some states are too small to be useful for providing estimates about certain racial and ethnic groups.The most recent BRFSS data is from 2023.23 TFAH tfah.orgMap 1:Adult Obesity Rate by State,2023Map 2:Change in Adult Obesity Rate by State,20182023 SOURCE:TFAH analysis of BRFSS 25%0055% No data availableCAWAORMTIDNVWYUTAZCONMNDSDNEKSOKTXMNIAMOARLAWIILINMIOHKYTNMSALMENYPAVANCSCGAWVFLVTNHMARICTNJDEMDAKHIDCSOURCE:TFAH analysis of BRFSSObesity rates increased 5%Obesity rates increased 5%Obesity rates increased 10%Obesity rates increased 15% No data availableCAWAORMTIDNVWYUTAZCONMNDSDNEKSOKTXMNIAMOARLAWIILINMIOHKYTNMSALMENYPAVANCSCGAWVFLVTNHMARICTNJDEMDAKHIDCSource:TFAH analysis of BRFSS data191Source:TFAH analysis of BRFSS data192WHY ARE REPORTED NATIONAL OBESITY RATES HIGHER THAN STATE-BY-STATE RATES?How is it that only 23 states have adult obesity rates exceeding 35 percent,yet the national obesity rate is 41.9 percent?Its because the two rates are from separate surveys with different methodologies and were conducted in different years.State obesity rates are from the BRFSS,which collects self-reported height and weight through landline and cellular telephone surveys.Research has demonstrated that people tend to overestimate their height and underestimate their weight.One study found that,due to this phenomenon,the BRFSS may underestimate obesity rates by 16 percent.193 NHANES,from which the national obesity rate is derived,calculates its obesity rate based on measurements obtained through in-person physical examinations.Accordingly,the higher rates found by NHANES are a more accurate reflection of obesity in the United States.194 NHANES does not have state-level data,which is why TFAH also uses BRFSS data.24TFAH tfah.orgFIGURE 3:Percent of Adults with Obesity Overall,and by Race/Ethnicity and Sex,201720200 0P%WhiteWomenLatinaWomenBlackWomenAsianWomenWhiteMenLatinoMenBlackMenAsianMenWhiteAdultsLatinoAdultsBlackAdultsAsianAdultsWomenMenAll Adults41.9A.8A.8.1I.9E.6A.4.6.4E.2C.1.5W.9E.79.6%Source:NHANES196II.Demographic trends Obesity rates diverge along a number of demographic measures,including race/ethnicity,income,education,and geography.While obesity rates depend on many factorsfrom economic and community effects,to cultural and marketing influences,and individual-level behaviorsall are inexorably linked with the social,economic,and environmental conditions that individuals experience.Broader equity issues,like structural racism,poverty,and community context shape daily life and available choices around healthy food,physical activity,education,jobs,financial security,etc.(together,these are often called the“social determinants of health”),which systematically affect peoples weight and health.195 See Appendix on page 77 for state-level indicators that track some of these structural factors,including community conditions(e.g.,poverty rate),the built environment,active transportation,and food systems(e.g.,percentage of children who live in neighborhoods with sidewalks/walking paths),as well as state policies that improve conditions(e.g.,universal free school meals).l Race/ethnicity:Racial/ethnic disparities in obesity rates are significant(see Figure 3).l According to 20172020 NHANES data,Black Americans had the highest rate of obesity(49.9 percent)for adults ages 20 and higher,followed by Hispanic(45.6 percent),white(41.4 percent),and Asian(16.1 percent)adults.l More than half57.9 percentof Black women had obesity.That is the highest sex and race/ethnicity combination included in NHANESand an 18-percentage point difference compared with white women(39.6 percent).In contrast,Black men had an obesity rate of 40.4 percent,which is lower than white men(43.1 percent).197l Asian adults overall had much lower rates of obesity than any other race/ethnicity reported in NHANES.Other studies have shown variation in obesity rates among different ethnicities and national origins within the population.For example,the 2023 National Health Interview Study found that Native Hawaiian and other Pacific Islander adults ages 18 and older had self-reported obesity rates of 40.1 percent,while Asian adults had an obesity rate of 13.3 percent(and whites had a 33.5 percent obesity rate).198l There is also evidence suggesting that Asian people should have lower BMI cutoffs for overweight and obesity measures than other races and ethnicities,because they have higher health risks at lower BMIs.This includes a higher risk for type 2 diabetes and other metabolic diseases at lower BMIs.199 Since a high BMI is a factor in determining whether to test for diabetes,fewer Asian individuals are tested and diagnosed by healthcare providers.200 An estimated 40 percent of Asian people with diabetes have not been 25 TFAH tfah.orgdiagnosed,which is much higher than the overall population.201l It is also important to note that many national surveys,including NHANES,do not report data on health measures for American Indian and Alaska Native(AI/AN)people.This gap in the data highlights the need for more attention and resources to advance equitable data collection and reporting for populations of smaller sizes.The surveys that do exist do not gather or present findings by Tribal Nations.Available data show that the AI/AN population has very high rates of obesity.The 2023 National Health Interview Survey,which is based on self-reported height and weight,finds 45.1 percent of AI/AN adults had obesity,which is slightly higher than Black adults in that survey(42.8 percent)and substantially higher than white adults(33.5 percent).202 l Of note,in March 2024,the Office on Management and Budget issued updated standards on federal data collection and reporting on racial and ethnic data.Key changes include combining race/ethnicity into one question and adding Middle Eastern or North African in the racial/ethnic categories listed.This is the first update in more than 25 years and an important step in improving federal data collection and reporting.203l Income and education:Obesity rates were lower among adults living in higher-income households and adults with college degrees.l In 20172020,43.9 percent of adults living in households with incomes at or below 130 percent of the federal poverty level(FPL)had obesity,46.5 percent of adults in households at 130350 percent of FPL had obesity,and 39 percent of adults in households above 350 percent FPL had obesity.204 FPL varies by household size and is updated each year.For example,for an individual in 2024,FPL is an annual income of$15,060 and for a family of four,FPL is an annual income of$27,750.205 The trends varied by sex,with men in the below-130 percent FPL income category having lower obesity rates(38.6 percent)than men in the middle-income(43.9 percent)and higher-income(42.4 percent)categories.For women,the data shows obesity rates in the lower-income category at 47.9 percent,middle-income category at 48.8 percent,and higher-income category at 35.1 percent.206l In 20172020,40.1 percent of adults with less than a high school education had obesity compared with 46.4 percent of adults with a high school diploma and 34.1 percent of college graduates.207l Rural/Urban:Rural regions have higher rates of obesity and severe obesity.l According to 2016 BRFSS data,adult obesity rates were 19 percent higher in rural regions than they were in metro areas.More than one-third(34.2 percent)of adults in rural areas had self-reported obesity compared with 28.7 percent of metro adults.208 l Similarly,a CDC analysis of NHANES data found that adults(ages 20 and older)who lived in the most urban areas of the country(large“metropolitan statistical areas”)had the lowest obesity rates in 20132016.209 26TFAH tfah.orgTABLE 1:Adult Obesity Rates and Related Health Indicators,2023ObesityOverweight&Obesity DiabetesPhysical InactivityHypertensionStatesPercent of Adults With ObesityRankPercent of Adults With Obesity or Were Overweight RankPercent of Adults with Diabetes RankPercent of Adults Who Were Physically InactiveRankPercent of Adults with HypertensionRankAlabama39.2572.03-T16.1428.4645.52Alaska*35.2 /-1.82268.4 /-1.828-T8.9 /-1.04620.5 /-1.637-T34.4 /-1.825-TArizona31.93366.434-T11.428-T20.527-T33.829Arkansas*40.0 /-1.8371.9 /-1.7514.8 /-1.36-T32.1 /-1.7243.2 /-1.85California27.74564.04411.824-T21.133-T31.146Colorado24.94859.8488.44716.44727.549Connecticut29.44165.837-T9.74023.92333.134Delaware35.71771.47-T13.6825.017-T38.59D.C.23.5 /-2.24957.1 /-2.7497.3 /-1.24914.5 /-2.14929.2 /-2.447Florida30.14065.739-T13.011-T24.02237.014-TGeorgia35.02368.72612.91324.22135.919Hawaii26.14760.54711.13121.133-T32.836Idaho31.03566.7339.83919.94231.841Illinois36 /-1.912-T*71.0 /-1.71112.2 /-1.32020.5 /-1.637-T33.9 /-1.827-TIndiana37.87-T71.21013.4923.82438.410-TIowa37.8 /-1.47-T72.1 /-1.3211.2 /-0.83023.5 /-1.22534.6 /-1.322Kansas35.915-T69.220-T11.52724.52034.523-TKentuckyn/a-n/a-n/a-n/a-n/a-Louisiana39.9472.03T16.2329.84-T43.94Maine32.63267.93011.428-T21.929-T36.216-TMaryland34.12668.824-T12.417-T21.929-T36.216-TMassachusetts27.44662.64610.23821.43231.543Michigan35.41968.824-T12.417-T25.017-T37.312-TMinnesota33.3 /-1.229-T67.5 /-1.23110.7 /-0.834-T*21.7 /-1.13131.2 /-1.144-TMississippi40.1271.7617.2233.5146.81Missouri35.320-T69.617-T12.614-T27.3737.014-TMontana30.53865.739-T9.443-T19.34432.538Nebraska36.61071.47-T10.832-T23.02733.433Nevada30.83666.434-T11.824-T24.91934.921New Hampshire32.83168.428-T9.34520.440-T33.730-TNew Jersey28.9 /-1.44264.8 /-1.54110.7 /-0.934-T22.8 /-1.32834.4 /-1.525-TNew Mexico35.320-T69.220-T12.417-T23.12634.523-TNew York28.04464.14310.734-T25.21532.637North Carolina34.02768.92312.51621.133-T38.410-TNorth Dakota35.61871.399.642-T20.440-T31.940Ohio36.4 /-1.21169.6 /-1.217-T13.1 /-0.81025.6 /-1.11237.3 /-1.212-TOklahoma38.7670.61312.614-T29.84-T39.28Oregon*33.6 /-1.62867.0 /-1.73210.8 /-1.132-T18.6 /-1.44533.7 /-1.630TPennsylvanian/a-n/a-n/a-n/a-n/a-Rhode Island31.6 /-1.43466.3 /-2.03611.9 /-1.222-T25.7 /-1.810-T33.9 /-1.927-TSouth Carolina36 /-3.112-T69.8 /-1.416*15.1 /-1.0525.5 /-1.31339.4 /-1.47South Dakota36.012-T70.3 /-2.914*11.9 /-2.022-T25.3 /-2.91435.4 /-3.120Tennessee37.6970.71214.86-T25.11641.16Texas34.42469.41913.011-T26.4832.935Utah30.2 /-1.23964.5 /-1.3427.7 /-0.64815.0 /-0.94827.7 /-1.148Vermont28.84363.5459.443-T19.64332.439Virginia34.32568.62712.02121.03636.118Washington30.63765.837-T9.641-T17.54631.244-TWest Virginia41.2 /-1.8173.2 /-1.7118.3 /-1.3131.6 /-1.7345.4 /-1.83Wisconsin35.915-T70.11511.62625.8933.532Wyoming33.3 /-1.929-T69.1 /-1.92210.7 /-1.134-T25.7 /-1.710-T31.7 /-1.742SOURCE:TFAH analysis of Behavioral Risk Factor Surveillance System data NOTE:For rankings,1=Highest Rate,and 51=Lowest Rate;T=Tie.Red and*indicate state rates that significantly increased between 2022 and 2023;Green and*indicate state rates that significantly decreased between 2022 and 2023;Bold indicates state rates that significantly increased between 2018 and 2023.Hypertension data is collected bi-annually;this data is from 2023.Data from Kentucky and Pennsylvania were not available for 2023.27 TFAH tfah.orgTABLE 2:Adult Obesity Rates by Race/Ethnicity,20212023American Indian/Alaska Native*Asian*Black*Latino*White*StatesPercent of AI/AN Adults With ObesityRankPercent of Asian Adults With ObesityRankPercent of Black Adults With ObesityRankPercent of Latino Adults With ObesityRankPercent of White Adults With ObesityRankAlabama43.113n/a-49.6136.12536.010Alaska37.3 /-3.32623.9138.72734.63532.425-TArizona48.13-T13.12239.92338.11228.8 /-1.238Arkansas35.4 /-8.72915.21248.2 /-3.7335.629-T37.43-TCalifornia36.22711.628-T37.52835.92725.745Colorado33.63511.628-T29.542-T30.94723.7 /-0.846Connecticut29.14213.319-T41.92236.02628.241Delaware34.43215.6 /-6.6944.91134.03634.1 /-1.518D.C.n/a-11.5 /-4.83137 /-2.42928.3 /-4.94813.5 /-1.448Floridan/a-n/a-n/a-n/a-n/a-Georgia23.44316.0743.813-T33.54132.622-THawaiin/a-17.8528.14432.145-T20.1 /-1.447Idaho44.59n/a-31.040-T36.223-T31.3 /-0.930-TIllinois32.43810.03842.519-T41.3233.320-TIndiana34.73110.33644.71240.5537.06Iowa48.13-T13.023-T39.42537.51637.4 /-0.83-TKansas45.6712.12639.52439.0935.513Kentuckyn/a-n/a-n/a-n/a-n/a-Louisiana38.32317.3647.17-T36.820-T36.6 /-1.27Maine41.218n/a-31.93834.83432.425-TMaryland31.939-T14.31342.519-T35.7 /-2.42831.1 /-0.932Massachusetts31.04111.23335.13635.33227.144Michigan31.939-T10.23742.519-T39.3734.417Minnesota42.11719.7435.73533.93733.3 /-0.720-TMississippin/a-n/a-47.17-T41.2335.216Missouri32.73711.628-T43.11737.71435.9 /-1.011Montana39.022n/a-n/a-38.51130.035-TNebraska40.41915.31136.23437.117-T36.3 /-0.89Nevada37.524-T20.8 /-7,4336.33335.53130.933-TNew Hampshiren/a-9.43933.73740.4631.729New Jerseyn/a-13.319-T36.63133.64028.1 /-1.142New Mexico42.315-T15.51043.31637.91327.9 /-1.643New York34.23314.11436.53233.04228.739North Carolina37.524-T11.43248.1433.73931.828North Dakota47.1 /-5.6523.0227.14533.83835.3 /-1.015Ohio35.92813.71643.61536.42237.25Oklahoma45.2813.417-T47.5542.4138.22Oregon43.31013.417-T31.13938.61031.3 /-1.030-TPennsylvanian/a-n/a-n/a-n/a-n/a-Rhode Island42.41414.01538.92634.93329.8 /-1.237South Carolina42.315-T12.22545.61032.74432.622-TSouth Dakota46.16n/a-31.040T37.01936.5 /-1.98Tennessee33.236n/a-47.4636.820T35.712Texas39.62013.023-T43.813-T39.2832.524Utah43.211-T10.63529.542-T36.223-T30.0 /-0.835-TVermont33.73411.03425.94632.94328.340Virginia35.33013.22146.6932.145-T33.719Washington43.211-T11.72736.83037.61530.933-TWest Virginia48.9 /-13.01n/a-42.81837.117-T41.0 /-1.01Wisconsin48.5215.9848.4235.629-T35.414Wyoming39.5 /-9.821n/a-n/a-40.7432.2 /-1.227SOURCE:TFAH analysis of Behavioral Risk Factor Surveillance System dataNOTE:For rankings,1=Highest Rate,and 51=Lowest Rate;T=Tie.*For race/ethnicity data,three years of data are needed for sufficient sample size;20212023 data were used here.Some data are not available due to an insufficient sample size or missing annual data.28TFAH tfah.orgTABLE 3:Adult Obesity Rates by Sex and Age,2023MaleFemaleAges 18-24Ages 25-44Ages 45-64Ages 65 StatesPercent of Men With ObesityRankPercent of Women With ObesityRankPercent With ObesityRankPercent With ObesityRankPercent With ObesityRankPercent With ObesityRankAlabama37.86-T40.7526.1842.4445.7433.612-TAlaska35.9 /-2.511-T34.3 /-2.72622.81435.622-T41.4 /-3.12032.7 /-3.322Arizona32.129-T31.63320.82234.23138.23127.2 /-2.040Arkansas38.4241.7429.2 /-7.1144.0245.3534.2 /-2.59California28.44426.94714.94530.24132.74623.4 /-2.248Colorado24.54825.348-T13.0 /-3.14923.44831.74723.847Connecticut28.84330.04014.14832.336-T33.942-T27.141Delaware33.62137.7 /-3.11220.125-T37.51742.61333.017D.C.19.44927.2 /-3.34617.34020.6 /-3.34930.94825.9 /-3.845Florida30.935-T29.34119.92928.64636.53628.433Georgia31.73238.21119.63235.424-T43.31132.126Hawaii26.94725.3 /-2.148-T21.319-T29.24429.6 /-2.64920.5 /-2.449Idaho30.935-T31.0 /-2.33520.125-T31.34036.13730.6 /-2.729Illinois35.911-T36.02017.73937.81641.22235.8 /-3.82Indiana35.21740.5625.51140.4942.514-T35.33Iowa37.0 /-1.9938.6 /-2.01026.4639.51043.9834.8 /-2.25-TKansas35.71636.118-T22.51538.51241.32133.9 /-2.210Kentuckyn/a-n/a-n/a-n/a-n/a-n/a-Louisiana38.04-T41.8326.6 /-5.8541.9646.1336.11Maine31.8 /-1.83133.52922.21634.52837.33429.6 /-1.632Maryland32.8 /-1.82635.223-T22.01734.429-T39.6 /-2.126-T32.0 /-1.927Massachusetts27.04627.84516.54127.04732.94526.143-TMichigan33.32437.513-T19.830-T36.71942.514-T32.818-TMinnesota33.422-T33.1 /-1.73120.027-T33.33239.12932.523Mississippi38.04-T42.0226.2743.7348.4132.2 /-4.125Missouri34.519-T36.118-T19.830-T36.42042.514-T32.8 /-2.518-TMontana30.03930.936-T21.319-T29.54335.73929.931Nebraska36.61036.616-T19.13438.91142.81235.14Nevada29.6 /-4.04032.03218.8 /-7.33632.038-T37.03526.4 /-4.342New Hampshire34.71830.7 /-2.43818.13834.429-T39.52828.035New Jersey29.2 /-2.04228.6 /-2.14314.34729.7 /-2.84233.942-T27.837New Mexico37.4833.33025.91042.2539.03027.538New York27.34528.74215.84428.74533.34426.143-TNorth Carolina31.43436.616-T14.64635.02741.71932.324North Dakota35.8 /-2.313-T35.223-T21.8 /-5.21838.21340.2 /-2.92534.8 /-2.55-TOhio35.813-T37.0 /-1.81520.62338.11443.41033.711Oklahoma38.2339.3926.8341.8745.2632.8 /-2.418-TOregon33.1 /-2.32534.22721.319-T32.8 /-2.73439.6 /-3.026-T33.2 /-3.216Pennsylvanian/a-n/a-n/a-n/a-n/a-n/a-Rhode Island31.63331.53419.33335.82135.83827.339South Carolina32.32839.6726.0935.424-T44.3731.428South Dakota37.86-T34.1 /-4.62823.11337.91542.41733.315Tennessee35.813-T39.4827.6240.5841.81833.414Texas33.422-T35.52220.42435.32640.82432.818-TUtah30.13830.23916.44232.038-T37.43327.936Vermont29.44128.14415.94332.63534.04124.4 /-2.646Virginia32.62735.92118.73737.21838.13233.612-TWashington30.43730.936-T18.93532.336-T34.94028.134West Virginia40.1 /-2.7142.2 /-2.5126.7446.4 /-3.9147.4 /-3.0234.7 /-2.67Wisconsin34.519-T37.513-T20.027-T35.622-T43.6 /-2.0934.3 /-1.68Wyoming32.1 /-2.529-T34.7 /-2.82523.7 /-6.51232.9 /-3.93341 /-3.22330.0 /-2.430Source:TFAH analysis of BRFSS data210NOTE:For rankings,1=Highest Rate,and 51=Lowest Rate;T=Tie.Data from Kentucky and Pennsylvania were not available for 2023.29 TFAH tfah.orgB.TRENDS IN YOUTH OBESITY As with adults,obesity has been rising among children for decades.Between the inaugural 19761980 NHANES survey and the 20172020 survey,obesity rates for children ages 2 to 19 more than tripled,from 5.5 to 19.7 percent.211,212 This section includes the latest data available on childhood obesity.As with adults,this report relies on multiple surveys to better understand the full picture of childhood obesity.DATA SOURCES FOR CHILDHOOD OBESITY MEASURES1.NHANES is the primary source for national obesity data on adults and on children ages 2 to 19 in this report.NHANES is particularly valuable in that it combines interviews with physical examinations,including measured heights and weights,while also covering a wide age range of Americans.The downsides of the survey include a time delay from collection to reporting and samples that do not break out local data.The most recent NHANES data are from a combination of the 20172018 and 20192020 NHANES surveys since data collection was disrupted by the COVID-19 pandemic.The 20212023 NHANES survey is expected to be released in fall 2024.2132.The WIC Participant and Program Characteristics Report is a biennial census of low-income mothers and young children(under the age of 5)that WIC serves.214 Because obesity disproportionately affects individuals with low incomes,early childhood is a critical time for obesity prevention,and the data provide valuable information for evaluating the effectiveness of programs aimed at reducing obesity rates and health disparities.The most recent public WIC data on obesity are from 2020.The 2022 WIC data do not include obesity data due to in-person data-collection issues related to the COVID-19 pandemic,though it is expected to be included again in the 2024 survey.215 3.The National Survey of Childrens Health surveys parents of children about aspects of their childrens health,including height and weight for children ages 6 to 17.An advantage of this survey is that it includes state-level data.A disadvantage is that height and weight data are parent-reported,not directly measured.216 The most recent data are from the 20212022 survey.This iteration expanded the age range for reporting weight status to children ages 6 to 17,from ages 10 to 17 in previous years.217,2184.The Youth Risk Behavior Survey(YRBS)measures health behaviors,including eating habits and physical activity behaviors,as well as weight status(determined from self-reported height and weight),among students in grades 9 to 12.As in other surveys that use self-reported data to measure obesity,this survey likely underreports the true rates.219 YRBS officials conduct the survey in odd-numbered years;2021 is the most recent dataset available,though the 2023 survey is expected in 2024.220 The 2021 survey includes state-level samples for 44 states plus three U.S.territories,two tribal areas,the District of Columbia,and select large urban school districts,as well as a separate national sample.22105101520252017202020152016201320142011201220092010200720082005200620032004200120021999200019881994Source:NHANESFigure 4:Percent of Youth with Obesity,1988202030TFAH tfah.orgI.National Youth Obesity Rates(NHANES)The most recent national data,the 20172020 NHANES survey,found that 19.7 percent of youth ages 2 through 19 had obesity.222 The data show variation in obesity prevalence by demographic and socioeconomic groups:l Race/ethnicity:Black and Hispanic youth had higher rates of obesity than their Asian and white peers.Obesity prevalence for Asian youth was 9 percent,Black youth 24.8 percent,Hispanic youth 26.2 percent,and white youth 16.6 percent in 20172020.l Sex:Boys are slightly more likely to have obesity than girls.In 20172020,20.9 percent of boys had obesity,and 18.5 percent of girls had obesity.l Age:The prevalence of obesity increases with age.In 20172020,12.7 percent of children ages 2 to 5,20.7 percent of children ages 6 to 11,and 22.2 percent of children ages 12 to 19 had obesity.Between the 19761980 NHANES survey and the 20172020 survey,the percentage of children ages 2 to 19 with obesity overall tripled,with the obesity rates of teens ages 12 to 19 quadrupling.223l Household income:Children in households with lower incomes have higher rates of obesity.In 20172020,25.8 percent of children living in households with incomes below 130 percent of FPL had obesity,21.2 percent of children in households at 130350 percent of FPL had obesity,and 11.5 percent of children in households above 350 percent FPL had obesity.224II.Young WIC Participants,Ages 2 to 4(WIC Program Data)In 2020,14.6 percent of children ages 2 to 4 in the WIC program had obesity,and 15.3 percent were overweight.The percentage of children who were overweight or had obesity increased between 1992 and 2008,then decreased between 2010 and 2020 after a 2009 change in the WIC benefits to allow for healthier food options,including fruits,vegetables,seafood,and whole grains(see page 45 for more on WIC).American Indian and Hispanic children were the most likely to be overweight or have obesity compared with other races/ethnicities.225,226(See Figure 5 for the most recent data by race/ethnicity as well as the chart on page 33 for state-level data.)05101520253035MultiracialWhite Pacific Islander LatinoBlack Asian American IndianOverallFIGURE 5:Percent of Children Ages 24 in the WIC Program Who Are Overweight or Have Obesity,by Race/Ethnicity,2020 Overweight Obesity15.3.6.3.7.4.7.1.3.5.3.8.3.5%Source:USDA Food and Nutrition Service22731 TFAH tfah.orgIII.Obesity Rates in Children and Teenagers,Ages 6 to 17(National Survey of Childrens Health)The National Survey of Childrens Health 20212022 survey reported that,nationwide,18.1 percent of children ages 6 to 17 had obesity and another 15.6 percent were overweight.228(Note:this years survey has an expanded age range surveyed for obesity questions to include children ages 6 to 17 when previous years only included ages 10 to 17.)Other takeaways:l Boys had higher rates of obesity(20.5 percent)than girls(15.6 percent).l Obesity rates varied by racial/ethnic groups:29.6 for AI/AN children,12.4 for Asian children,25.2 for Black children,23.7 percent for Hispanic children,13.9 percent for white children,and 17.6 percent for multi-racial children.l Children in households with higher incomes had lower rates of obesity.In 20212022,children in households where income was 400 percent of FPL or greater had a 10.9 percent obesity rate;those in 200399 percent FPL had an 18.8 percent obesity rate;100199 percent FPL had a 22.3 percent obesity rate;and 099 percent FPL had a 25.9 percent obesity rate.The lowest-income group had well over twice the rate of the highest-income group.l Obesity rates also varied by state.The states with the highest rates of obesity for children ages 6 to 17 were Mississippi(26.1 percent),Kentucky(24.6 percent),and New Mexico(24.2 percent);the states with the lowest rates of obesity were Vermont(11.6 percent),Minnesota(13.1 percent),and Utah(13.1 percent).(See chart on page 33 for more state data.)22915 %Research Findings About Dashboard An Introduction to SNAPSNAP provides food benefits to low-income families to supplement their grocery budget so they can afford thenutritious food essential to health and well-being.SNAP reduces poverty and food insecurityamong the 42.2 million people it served onaverage each month in fiscal year 2023,while stimulating economic growthin communities.Most people who participate in SNAP are children,elderlyadults,or people with a disability.67%of individualsparticipating in SNAP are a child,an elderly adult,or anadult with a disability.13ult without disabilities,no children in household20ult without disabilities,child(ren)in household9ult with a disability18%Elderly adult40%ChildMost people who participate in SNAP are children,older adults,or people with disabilitySource:USDA Food and Nutrition Service28739 TFAH tfah.orgmust meet specific work requirements in order to participate in SNAP for more than three months in a three-year period(commonly known as“the time limit”).In October 2023,the time limit requirement expanded from ages 1849 to ages 1852,and will increase again,to ages 1854 in October 2024.295,296 The legislation also created exceptions to the time limit for certain individuals without dependents:those experiencing homelessness,veterans,and youth ages 18 to 24 who have aged out of foster care.297 Further restrictions on SNAP benefits could negatively impact a persons ability to access needed nutrition assistance.In 2019,USDA began implementation of a SNAP Online pilot program,which was authorized in the 2014 Farm Bill,to test online ordering and payment for SNAP purchases.298 Since that time,SNAP Online has become available in all 50 states and Washington,DC.Furthermore,FNS has established a cooperative grant project between USDA FNS and the National Grocers Association Foundation,called SNAP EBT Modernization Technical Assistance Center to provide information and technical assistance to those who are interested or to those who are in process of enrolling in the SNAP Online pilot.299,300FNS also awards competitive Process and Technology Improvement Grants annually to support state agency,community-based,and faith-based partners efforts to develop and implement technology-based projects that improve the quality and efficiency of SNAP application and eligibility determination systems.301 Each year,FNS offers up to$5 million in Process and Technology Improvement Grants for projects that support the modernization of SNAP customer service and client communications;improve administrative infrastructure;or invest in technology that allow for easier enrollment and collaboration with other assistance programs.302 These grants help to improve access to SNAP by ensuring more timely and accurate benefits for enrollees.SNAP has an educational component called SNAP-Education(SNAP-Ed)that funds nutrition and obesity prevention programs and initiatives for SNAP enrollees and other individuals in low-income communities.SNAP-Eds classes,campaigns,and policy and environmental change initiatives help people stretch food budgets,prepare healthy meals,and lead physically active lives.303 Recent examples of SNAP-Ed activities include:l Merrymeeting Gleaners.This gleaning or excess harvesting partnership group in midcoastal Maine partnered with Maine farmers who share their harvest surplus with community members experiencing food insecurity.Through SNAP-Ed support,Merrymeeting Gleaners collects and distributes quality produce that would otherwise go to waste to community sites across the state to address nutrition security.304l Reno Extension,at the University of Nevada.This SNAP-Ed implementing agency is empowering preschoolers in Nevada to learn about healthy foods and to participate in more structured physical activities aimed at building healthy habits into adolescent and adult years.305 l The Turtle Island Tales Family Wellness Program.This is a program for low-income,SNAP-eligible American Indian families created by Montana State University Center for American Indian and Rural 40TFAH tfah.orgHealth Equity that focuses its home-based,family-level,direct education interventions on providing culturally appropriate skills and tools to support making healthy lifestyle choices.306Congress funded SNAP at$122.38 billion for FY 2024,including$521 million for SNAP-Ed.307,308Congress is considering changes to SNAP through the 2024Farm Bill.There is also a bipartisan effort in Congress to pass the SNAP Nutrition Security Act of 2023,which would require USDA to report SNAP nutrition data to Congress in its annual report and require a SNAP sales report on affordability every four years(including types of products typically purchased with SNAP resources).309 The bill sponsors hope that its passage would provide data to improve diet quality and nutrition security,while leading anti-hunger groups are concerned that the data will be used to reduce or restrict SNAP purchases in the future.310,311 Debates around changes to SNAP are also occurring at the state level,with some states widening access to SNAP and others looking to restrict access or change eligibility requirements.312 The federal government is also considering changes to SNAP that would change how benefits are calculated,which would decrease the value of benefits over time.313 The Gus Schumacher Nutrition Incentive Program(GusNIP)The GusNIP portfolio includes three grant programs for state and local governments and nonprofits.The programs include(1)nutrition incentives to encourage SNAP participants to purchase and consume more fruits and vegetables,(2)produce prescriptions,and(3)technical assistance and evaluation to improve GusNIP programs.314 Nutrition-incentive projects support point-of-purchase incentives,specifically for SNAP participants,such as 1:1 purchasing(e.g.,“spend$10 and get$20 worth of produce”).Produce prescriptions projects support healthcare providers writing“fruits and vegetables prescriptions”that can be redeemed for fresh produce for patients who are low-income,food insecure,and often have a diet-related chronic disease.315,316From 2019 to 2023,GusNIP has provided over$290 million in funding to more than 200 projects throughout the United States.An analysis of the programs impact for September 2022August 2023 found that the nutrition-incentive and produce prescription programs improved participant food and nutrition security,and participants ate more fruits and vegetables than the average adult.317 GusNIP programs also generated over$107 million in economic benefits during that time for surrounding local economies,a 25 percent increase over the previous year.318,319Established in its current form by the 2018 Farm Bill,GusNIP is the successor to the Healthy Incentives Pilot and Food Insecurity Nutrition Incentive grant programs and is administered by USDA National Institute of Food and Agriculture with support from FNS.320,321 GusNIP was authorized$56 million in total program funding for FY 2024 and beyond in the 2018 Farm Bill.322 Given the support from more than 600 farm,food,and health leaders to expand and strengthen GusNIP,323 there are currently several bills in Congress that could increase annual funding for GusNIP and strengthen the program,including reducing the partnering organizations required federal match requirements.41 TFAH tfah.orgChild Nutrition ProgramsUSDA Child Nutrition Programs provide nutritious meals and snacks to children,adolescents,and some adults.324 These programs are federally funded and administered by FNS and state agencies.The major Child Nutrition Programs are described in the table below.The Child Nutrition Programs operate in multiple settings,including public and private schools,daycare centers,after-school programs,and residential childcare institutions.325 Food served through the Child Nutrition Programs must meet federal nutrition standards,making school meals some of the healthiest foods that American children eat,while also lowering food and nutrition insecurity,alleviating poverty,improving health outcomes,and boosting learning and development for school-age children and their families.337,338,339 School meals have also been linked to lower BMI and lower prevalence of obesity,particularly since the nutrition standards were strengthened following passage of the Healthy,Hunger-Free Kids Act of 2010.340,341,342,343 Although various congressional and administrative actions have weakened some nutrition standards for school meals set out in the Healthy,Hunger-Free Kids Act,these programs tend to have bipartisan support in Congress,and there have been multiple legislative and administrative efforts to improve on the programs success.344To support school-age children from low-income families during the summer months,FNS provides two complementary programs to increase food and nutrition security:345TABLE 5:MAJOR USDA CHILD NUTRITION PROGRAMSNational School Lunch Program(NSLP)NSLP is the nations second-largest nutrition assistance program,providing healthy lunches to Americas school-age children since 1946.326 NSLP is the largest of the Child Nutrition Programs,feeding an average of nearly 29 million children per day in FY2023,327 and serving nutritious meals to school-age children at low or no cost.328School Breakfast Program(SBP)SBP serves nutritious breakfasts to school-age children at low or no cost,feeding an average of nearly 15 million children per day in FY 2023.329,330Special Milk Program(SMP)Schools that do not participate in either NSLP or SBPor offer half-day pre-kindergarten and kindergarten programs for students who do not participate in school meals programscan participate in SPM,which reimburses schools for providing milk.331Child and Adult Care Food Program(CACFP)CACFP reimburses participating childcare centers,daycare homes,after-school programs,children residing in emergency shelters,and adult daycare centers for the cost of nutritious meals and snacks.332Summer Food Service Program(SFSP)SFSP provides free healthy meals and snacks to school-age children in low-income communities when school is not in session.333Summer Electronic Benefits Transfer for Children(or“SUN Bucks”)SUN Bucks provide funds to families with eligible school-age children in participating states to buy groceries during the summer months.334Fresh Fruit and Vegetable Program(FFVP)FFVP provides fresh fruits and vegetables to students at eligible elementary schools during school days in an effort to increase consumption of fresh,unprocessed produce.335Patrick Leahy Farm to School Grant ProgramThe Farm to School Grant Program helps improve access to healthy local foods in schools through field trips,school gardens,and sourcing local food for school meals.33642TFAH tfah.orgl SFSP provides free nutritious meals and snacks to school-age children during the summer months when school is not in session.346 These meals are provided in a central,supervised site,such as a school or community center,and often accompanied by an enrichment activity.347 However,in certain rural communities where in-person,congregate meal service is not available,school-age children have access to grab-and-go or delivered meals.348l SUN Bucks(previously Summer EBT)provides funds to families to buy groceries.349 SUN Bucks began as a pilot program in a few states more than a decade ago and served as the basis for Pandemic EBT,which provided a monthly grocery benefit to families with children eligible for free and reduced-price meals during pandemic-related childcare and school closures.350 As part of the FY2023 omnibus spending bill,Congress made Summer EBT permanent beginning in summer 2024,after data showed the program helped to reduce child hunger and improve diet quality.351,352 However,states have to opt in to participate in the program and pay a portion of the programs administrative fees.During summer 2024,37 states,the District of Columbia,all five U.S.territories,and two tribes were expected to participate in the program(see map below),offering nearly 21 million eligible individuals a SUN Bucks benefit of$120 per child.353,354 For future years,the benefit amount will be indexed to inflation,and additional states and tribes may choose to participate.355 State participatingCAWAORMTIDNVWYUTAZCONMNDSDNEKSOKTXMNIAMOARLAWIILINMIOHKYTNMSALMENYPAVANCSCGAWVFLVTNHMARICTNJDEMDAKHIDCMap 4:Summer 2024 SUN Bucks ParticipationSource:USDA Food and Nutrition Service356Note:In addition,to the states and District of Columbia noted in the map above,Cherokee and Chickasaw Nations,and the territories of American Samoa,Guam,Northern Mariana Islands,Puerto Rico,and Virgin Islands also participated in SUN Bucks in summer 2024.43 TFAH tfah.orgRecent Administrative and Legislative Action for Child Nutrition ProgramsThere has been important work to improve nutrition quality and to expand school meals to more children across the United States over the last year.In April 2024,USDA finalized a rule to better align school and CACFP nutrition standards with the latest Dietary Guidelines for Americans,most notably by gradually reducing allowable levels of added sugars and sodium in the NSLP and SBP to improve nutrition security for school-age children.357,358 The rule also provides new menu-planning flexibilities(e.g.,supporting more plant-based and culturally-inclusive meals)and makes changes to program operations(e.g.,supporting local food purchases).359 The rule took effect July 1,2024,but FNS will gradually phase in the required changes over time(see graphic below).Program operators are not required to make changes until school year 2025/26 at the earliest.360The CEP is a reimbursement alternative for schools that serve high proportions of low-income children and participate in NSLP and SBP.CEP gives eligible schools the option to offer no-cost meals to all enrolled students without collecting household income applications by sharing eligibility data among select federal assistance programs.362 USDA finalized a rule in September 2023 that lo
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Information Technology Governance,Risk and Compliance in Healthcare v22 Copyright 2024,Cloud Security Alliance.All rights reserved.The permanent and official location for the Health Information Management Working Group is https:/cloudsecurityalliance.org/research/working-groups/health-information-management 2024 Cloud Security Alliance All Rights Reserved.You may download,store,display on your computer,view,print,and link to the Cloud Security Alliance at https:/cloudsecurityalliance.org subject to the following:(a)the draft may be used solely for your personal,informational,non-commercial use;(b)the draft may not be modified or altered in any way;(c)the draft may not be redistributed;and(d)the trademark,copyright or other notices may not be removed.You may quote portions of the draft as permitted by the Fair Use provisions of the United States Copyright Act,provided that you attribute the portions to the Cloud Security Alliance.3 Copyright 2024,Cloud Security Alliance.All rights reserved.AcknowledgmentsLead AuthorsDr.Jim AngleContributorsYutao MaAkhil MittalMichael RozaReviewersAnup GhatageTolgay Kizilelma,PhDNamal KulathungaYuvaraj MadheswaranVaibhav MalikAdeeb MohammedKenneth MorasMeghana ParwateAkshay ShettyRose SongerUdith WickramasuriyaCSA Global StaffAlex KaluzaClaire Lehnert4 Copyright 2024,Cloud Security Alliance.All rights reserved.Table of ContentsAcknowledgments.3Abstract.5Introduction.5Emerging Technologies and Their Impact on GRC.6Governance.6Plan.7Define.10Monitoring.11Discussion.11Threat.12Risk.12Assessing Risk.13Mitigating Risk.14Compliance.15Integration of Ethical Considerations in GRC.17Cloud Compliance Frameworks.17Global Cloud Frameworks.17Local Regulatory Frameworks.18Conclusion.19References.205 Copyright 2024,Cloud Security Alliance.All rights reserved.AbstractIt is becoming increasingly common for Healthcare Delivery Organizations(HDOs)to use cloud services,but the transition to the cloud presents challenges.One of the main challenges is establishing Governance,Risk,and Compliance(GRC)in the cloud,which requires redefining business and technology processes,and relying on third-party providers.To ensure that HDOs can reap the benefits of cloud computing,it is essential to design and implement a robust cloud GRC program that addresses these challenges and ensures compliance with industry regulations and standards.IntroductionHDOs recognize the value of having a complete view of risk and compliance through Governance,Risk,and Compliance(GRC)programs,which enable HDOs to address technology risk from a business perspective by aligning business and technology in a top-down approach.This top-down approach ensures that risks are identified and addressed while complying with industry regulations and standards.Cloud GRC is an effective means for organizations to gather important risk data,validate compliance,and report results.Cloud management is an important area of concern in cloud GRC,which is often implemented in silos across the organization.Failing to integrate the collective results into the GRC program can lead to a duplication of effort and not taking full advantage of GRC.A properly implemented GRC program can eliminate duplicate efforts,provide data repositories,and facilitate automation.This paper will discuss the elements of a good cloud GRC program and what is required to establish the program.Artificial intelligence(AI)is quickly increasing in importance,particularly in the healthcare industry.As a result,GRC is getting increased attention.AI GRC focuses on data quality and accuracy of AI and machine learning(ML)systems,ethical and legal issues,security,and privacy,given that patient and other sensitive data may be involved.GRC aims to establish the necessary oversight to align AI behaviors with ethical standards and societal expectations,and to safeguard against potential adverse impacts.GRC provides a means of sharing relevant information helping to bridge gaps and eliminate silos in the organization.6 Copyright 2024,Cloud Security Alliance.All rights reserved.Emerging Technologies and Their Impact on GRCThe rapid adoption of emerging technologies,such as blockchain,Internet of Things(IoT),AI,and advanced analytics in healthcare,poses new challenges and opportunities for GRC frameworks.These technologies can help streamline processes,enhance data integrity,and improve patient outcomes,but they also introduce complexities in compliance and security management.Addressing these technologies within GRC frameworks ensures they align with healthcare standards and regulations while bolstering cybersecurity measures.GovernanceDue to the unique characteristics of cloud computing,as opposed to an on-premises data center,HDOs need to rethink how they accomplish IT governance.HDOs must implement and maintain a governance lifecycle to plan,define,implement,and monitor governance.HDOs must consider how they manage a shared responsibility model and a multi-tenancy environment.Additionally,while an HDO may have a cloud-first policy,they will be in a hybrid cloud environment,at least initially.Effective IT governance in healthcare ensures that technology investments align with organizational goals,resources are allocated efficiently,and decision-making processes are transparent and accountable.This includes establishing policies,procedures,and standards for IT systems and personnel.Cloud-based architecture and business operations are more diverse and complex than traditional on-premises data center architecture,therefore relying on the same policies and tools used for on-premises environments will not ensure success in the cloud.1 Cloud governance is a collection of policies and standards of the HDO based on risk and a standard framework.According to the Information Systems Audit and Control Association(ISACA),governance in the cloud environment helps to realize benefits resulting from the use of cloud computing services while minimizing risk,optimizing investments and ensuring compliance with legislative and regulatory requirements.By creating a cloud governance model,the HDO can avoid many pitfalls of a cloud-first strategy.Introducing cloud computing into an HDO affects roles,responsibilities,processes,and metrics.Without governance in place to provide standards and guidelines for navigating the risk and efficiently procuring and operating cloud services,an HDO may find itself faced with some common problems:1 Capgemini,2021.Cloud Governance Guide-Business Aligned Approach to Cloud Utilization,Retrieved from https:/ Copyright 2024,Cloud Security Alliance.All rights reserved.Misalignment with enterprise objectives Frequent policy exception reviews Stalled projects Compliance or regulatory penalties or failures Data governance and management Budget overruns Incomplete risk assessments2The cloud governance lifecycle according to Service Oriented Architecture(SOA)framework consists of four phases:Plan Define Implement MonitorFigure 1:SOA Governance Vitality MethodPlan Planning starts with identifying stakeholder business needs and identifying how these needs will be addressed.The cloud computing governance lifecycle planning phase includes:1.Analyzing implemented governance models and processes.This involves assessing all aspects of corporate governance to find a starting point for creating or maintaining a cloud governance model in order to provide management level information to improve cloud computing governance,based on cloud computing governance maturity level which is based on 6 levels.Level 0:Non-existent cloud computing governance Level 1:Initial/ad hoc cloud computing governance Level 2:Repeatable cloud computing governance Level 3:Defined cloud computing governance2 Object Management Group,2019.Practical Guide to Cloud Governance,Retrieved from https:/www.omg.org/cloud/deliverables/practical-guide-to-cloud-governance.pdfImplementPlanMonitorDefine8 Copyright 2024,Cloud Security Alliance.All rights reserved.Level 4:Managed and measurable cloud computing governance Level 5:Optimized cloud computing governance 2.Cloud governance vision and strategy.The cloud governance vision is based on the guiding principles of cloud governance and business strategy.The strategy for realizing the vision for cloud computing should include cloud governance evaluation and the metrics definition for measuring value obtained from cloud governance.3.Scope of cloud governance.Identifying stakeholder needs Identifying cloud governance processes Identifying governance level and selection components of cloud governance 4.Adaptation of guiding principles.This activity is adapting cloud governance guiding principles for an HDO in accordance with the principles of enterprise IT governance.ISACA organization believe there are 6 guiding principles for adopting and using the cloud:enablement,cost benefit,enterprise risk,capability,accountability and trust.These principles,by highlighting issues and concerns on cloud computing,give a high-level guidance to HDO,and are helpful to satisfy HDOs business goal while adopting cloud solutions.5.Planning the cloud governance roadmap.A cloud governance roadmap defines the number of iterations in the cloud governance lifecycle.The initial deployment of cloud governance is performed during the implementation of the first cycle.During subsequent iterations,a whole cloud governance vision can be gradually implemented.3As an HDO starts planning for its governance model,two areas are critical for success.First is data classification.Data classification sets data access,use,and sharing rules across the ecosystem.The security requirements for the data determine classification.How secure does the data have to be?Is it Personally Identifiable Information(PII)or Protected Health Information(PHI),or can the data be freely shared?Second,identifying the roles and responsibilities.Cloud computing is in a shared responsibility environment.The following chart from Microsoft shows the responsibilities for different functions:3 Karkokov,S.&Feuerlicht G.,2016.Cloud Computing Governance Lifecycle,Acta Informatica Pragensia,5(1):5671 DOI:10.18267/j.aip.859 Copyright 2024,Cloud Security Alliance.All rights reserved.Figure 2:Cloud Shared Responsibilities from MicrosoftAs you can see,with a shared responsibility model,a governance model based on an on-premises data center will not be sufficient in a hybrid cloud environment.Its essential to have a clear understanding of the compliance inheritance from cloud service providers.This is because they are responsible for implementing controls that apply to the shared responsibility portion of what theyre controlling.As a customer,you are also responsible for implementing controls to achieve holistic compliance with regulations.For instance,if youre required to comply with the Health Insurance Portability and Accountability Act(HIPAA),your cloud service provider would implement a set of controls based on their portion of shared responsibilities for areas such as data center and virtualization security.However,as the cloud service customer,you are also accountable for implementing the remaining controls that come from compliance inheritance,such as implementing proper Identity and Access Management(IAM),access control to your applications,systems,and data,managing application vulnerabilities,ensuring that you have a secure software development lifecycle,adhering to data retention and data disposal requirements,implementing security controls,monitoring your cloud resources for anomalies and malicious activities,and handing incidents.IT GRC is an ongoing process that requires continuous monitoring,assessment,and improvement.Healthcare organizations should regularly review their IT GRC frameworks,assess their effectiveness,and make necessary adjustments to address changing risks,regulations,and business needs.MicrosoftCustomerSharedSaaSPaaSIaaSOn-preResponsibilityResponsibility always retained by the customerResponsibility varies by typeResponsibility transfers to cloud providerInformation and dataDevices(Mobile and PCs)Identity and directory infrastructureApplicationsNetwork controlsOperating systemPhysical hostsPhysical networkPhysical datacenterAccounts and identities10 Copyright 2024,Cloud Security Alliance.All rights reserved.DefineDefine is the process of defining the steps required to achieve the objectives of the planning phase.The following are some of the activities in this step.1.Evaluate the current state of cloud governance against a recognized governance maturity model.2.Define the governance policies and compliance regulations that apply to the HDO.43.Identify gaps that must be closed to meet the HDOs cloud governance requirement.4.Define governance bodies to carry out all governance processes.5.Define a governance framework.The Cloud Security Alliance(CSA)Cloud Controls Matrix(CCM)framework focuses on the entire information security lifecycle.5Additionally,the technology and tools required for implementing and managing cloud governance are defined in this activity.An analysis of existing enterprise technology and tools is conducted,and gaps are identified.The gap analysis results serve as the basis for acquiring technology and tools that should support automation capabilities for cloud governance.ImplementationImplementing a governance framework is a challenging process that requires collaboration,communication,monitoring,and continuous improvement.The HDOs defined the processes,technology,and tools in the Define phase.Now,the HDO needs to define the standards and procedures.These include guidelines for all aspects of cloud computing,such as provisioning,access management,and change control.These standards and procedures must be communicated to all stakeholders,clearly stating the roles and responsibilities of each stakeholder.Additionally,the HDO should provide training to familiarize all stakeholders with the cloud governance policies,procedures,and standards.6It is important to understand that implementing cloud governance will involve challenges.Some of the challenges will include security and privacy.The HDO needs to articulate the requirements for both.Challenges can be posed by the business in terms of roadmaps and overall strategy.This can lead to major delays when trying to roll out governance frameworks within the organization,in particular,when needing to work with engineering,DevOps,and developers that could prevent the ability to roll these out successfully.Additionally,lack of education on the importance of governance,and what controls actually mean,can pose unexpected challenges during implementation.4 Arend,C.,&Helkenberg,R.2021.Cloud Governance Success:A Practical Framework to Getting Started with Cloud Data Governance,Retrieved from https:/ Object Management Group,2019.Practical Guide to Cloud Governance,Retrieved from https:/www.omg.org/cloud/deliverables/practical-guide-to-cloud-governance.pdf 6 Ancoris,2023.Cloud Governance Framework:How to Develop,Implement and Follow One,Retrieved from https:/ Copyright 2024,Cloud Security Alliance.All rights reserved.MonitoringContinuous monitoring is crucial for ensuring the effectiveness of cloud governance.Policies and standards are not static;they must be updated as technology and regulations change.It is essential to review and update policies and standards as changes occur.The HDO should conduct periodic assessments to identify areas for improvement and make necessary adjustments.Monitoring allows the HDO to collect performance information on cloud governance processes and this information can be a key input for the next cycle.The HDO can then ensure the cloud governance goals and objectives are met.Monitoring must be continuous to provide current and accurate information.Measured data is evaluated continuously or at set intervals according to business needs7.Implementing Cloud Security Posture Management(CSPM)solutions offers comprehensive insights into cloud misconfigurations,delivering timely recommendations and effective strategies to mitigate technological risk exposures.Furthermore,the adoption of Infrastructure as Code(IaC)has revolutionized the management of cloud computing infrastructures,promoting proactive risk management.By utilizing static code analysis techniques,organizations can identify and address misconfigurations in their IaC scripts before they are deployed into production environments.This proactive approach significantly enhances the return on investment(ROI)by streamlining risk detection and facilitating swift remediation efforts,thereby fortifying cloud governance frameworks.DiscussionCloud governance can significantly enhance an HDOs ability to meet business needs using cloud computing.As HDOs continue to move to the cloud,they must understand how to utilize cloud services and achieve business-IT alignment.While there is not one specific cloud governance framework,HDOs need to pick a framework and adapt it to their needs.The CSA CCM framework focuses on the entire lifecycle and can benefit the HDO when developing its framework.Implementing cloud governance impacts business value creation and the benefit of cloud service utilization.However,HDOs may face some difficulties,such as integrating cloud governance into their existing governance processes,planning the governance roadmap,and designing the governance structure.Developing clear guidelines for implementing cloud governance will help overcome difficulties8.7 Karkokov,S.&Feuerlicht G.,2016.Cloud Computing Governance Lifecycle,Acta Informatica Pragensia,5(1):5671 DOI:10.18267/j.aip.85 8 Rasner,G.,2021.Cybersecurity&Third-Party Risk:Third-Party Threat Hunting,John Wiley&Sons,Inc.,Hoboken,NJ.12 Copyright 2024,Cloud Security Alliance.All rights reserved.ThreatUnlike traditional cybersecurity,which is adopted to protect assets,cybersecurity on healthcare is always relevant to human beings,it is usually connected directly to patient-facing networked technology for example,implantable medical devices which are vital to a patients life.On the other hand,the cybersecurity threat is increasing in terms of quantity,types(such as ransomware),and attacks on vulnerable IoT systems.In 2016,WannaCry was a non-targeted ransomware attack on more than 150 countries,including healthcare systems.WannaCrys most profound impact occurred in the UK and,as a result,Britains National Health Service(NHS)was severely infected,ransomware encrypted files,and criminals demanded a ransom before releasing medical records or critical devices from encoding.The result was disruption to the normal medical operations of more than 80 individual hospitals over four days.This cyberattack directly impacted lives and brought a new threat to the HDO.Tens of thousands of scheduled surgeries and clinical appointments between May 12 and May 19 had to be canceled.RiskCybersecurity risk is a subset of business risk and,as such,should be talked about in business terms.HDOs should view information risk in the context of organizational risk.When HDOs implement information security controls,their goal is to reduce risk.Since no information system is one hundred percent secure,the purpose of the control then is to reduce risk to an acceptable level and managing risk.To build a sound cyber defense,the HDO must understand risk.Cloud risk management is the process of identifying,assessing,and controlling risk within the modern hybrid cloud environments throughout the lifecycle of the cloud relationship.Risk management is complicated by the shared responsibility model due to the different cloud types(IaaS,PaaS,SaaS)adopted,and the lack of visibility into the CSP offerings and environments which is also part of Third-Party Risk Management(TPRM).Risk assessments can also be different,depending on the form of cloud deploymentprivate,public,or hybrid.Identifying risks is a foundational risk management activity;an HDO faces difficulties in successfully managing its risks if it does not identify them.HDOs must ensure they can identify risks promptly and then communicate them to the appropriate stakeholders.Important activities in risk identification include the following:Establish categories for risk.A common way of considering the threat landscape is to identify sources of risks/threats.This approach facilitates grouping risks into categories with common traits,tactics,and trends.Identify sources of risk for operations dependent on technology and information assets.Reviewing the HDOs historical experience with negative operational events can be a good first step toward identifying risk sources.An HDO could start with this list and then customize it based on the scope of its risk management activities and unique operating environment.13 Copyright 2024,Cloud Security Alliance.All rights reserved.Log identified risks in a risk register or other tracking mechanism,which organizes and records information on identified operational risks.The HDOs risk management strategy must prioritize operational activities and processes into those that are managed and those that are less important and require lower focus levels.9 HDOs should use a risk registry to log and manage identified risks.The following table is an example from the Cyber Resilience Review Supplemental Resource Guide:Risk Management.10 Establishing a reporting mechanism that aligns to the manner in which your tech organization likes to work,such as engineers utilizing a Slack channel for risks they would like to report.This is beneficial as it doesnt leave the responsibility on GRC to identify risk,and creates a security mindfulness culture that embraces and understands risk to the point they can report on them.Figure 3:Risk register CRR Supplemental Resource Guide Vol.7:Risk ManagementAssessing RiskThe risk analysis process ensures that all identified risks are evaluated in the context of the HDOs risk drivers to inform risk disposition decisions.Regardless of the methodology used to conduct the risk analysis,it is important to document the process to ensure consistency and provide context for future improvements.11 When conducting a cloud risk assessment,it is important to understand the shared responsibility model.In a traditional data center,all the security responsibility falls on the HDO.The most important thing is to understand who is responsible for all phases of a cloud deployment.12 Before acquiring a cloud service,HDO needs to analyze the risk associated with adopting a cloud-based solution and plan the risk treatment and control activities associated with the cloud-based operations.To do so,a cloud consumer needs to gain the perspective of the entire cloud Ecosystem that will serve the operations of their cloud-based information system.13 9 Carnegie Mellon University,2016.Cyber Resilience Review Supplemental Resource Guide:Risk Management,Department of Homeland Security10 Rasner,G.,2021.Cybersecurity&Third-Party Risk:Third-Party Threat Hunting,John Wiley&Sons,Inc.,Hoboken,NJ.11 Carnegie Mellon University,2016.Cyber Resilience Review Supplemental Resource Guide:Risk Management,Department of Homeland Security12 Rasner,G.,2021.Cybersecurity&Third-Party Risk:Third-Party Threat Hunting,John Wiley&Sons,Inc.,Hoboken,NJ.13 Iorga,M.,Karmel,A.,Managing Risk in a Cloud Ecosystem,doi.org/10.1109/MCC.2015.122Risk IDDate IdentifiedImpactLikelihoodDispositionRiskRatingRiskOwnerRisk DescriptionMitigating Controls14 Copyright 2024,Cloud Security Alliance.All rights reserved.It is important to use a recognized risk management framework when assessing risk.Recognized frameworks from ISO and NIST are developed with considerable input from large,diverse bodies.After assessing the risk,the HDO should apply controls to manage it.When carrying out risk assessment on a cloud platform,it is necessary to combine multiple assessment methods,such as configuration inspection and vulnerability scanning.However,the cloud platform introduces more valuable resources and has service level agreements with tenants,so some assessment methods need to be adjusted based on the characteristics of cloud computing.Questionnaire survey:The questionnaire provides a set of questions about management and operational control for system technical or managerial personnel to input.The questionnaire should include the HDO business strategy,security needs,management systems,system and data sensitivity,system size and structure,and so on.Interview:On-site interviews involve evaluators going to the site to interview system technical or managerial personnel and collect information on the physical,environmental,and operational aspects of the system.The content of the interview should include:Whether there is a design for data storage integrity testing Whether there are means and measures for clearing data copies The capability to identify,alarm,and block sustained large-traffic attacks,and whether there are specialized equipment to detect network intrusions Method of isolation between virtual machines(VMs)and between VMs and hosts Preliminary plans for exiting cloud computing services or changing cloud service providers,and plans for operational and security training for relevant customer personnel Security penetration testing:Due to the impact of infrastructure,penetration testing may not be allowed in SaaS environments.Cloud penetration testing is allowed in PaaS and IaaS,but requires certain coordination.Its worth noting that the SLA in the contract will determine what types of testing should be allowed,and how often testing should occur.Mitigating RiskHDOs will most likely be unable to assess the controls the CSP is responsible for.However,the cloud provider should be able to provide the HDO with a report from an independent assessor to validate that the proper controls are in place and working as intended.HDOs can request third-party attestation artifacts from the cloud service provider,such as SOC2.The HDO is responsible for conducting a risk assessment on their area of responsibility based on the shared responsibility model.In most cloud service models,the HDO remains accountable for the devices used to access the cloud,network connectivity,your accounts and identities,and your data.14 Risk assessments evaluate the effectiveness,efficiency,and appropriateness of HDOs security controls.This includes but is not limited to checking whether encryption standards are met for data at rest and in transit,whether logging and monitoring are correctly configured,whether 14 Microsoft,2023.Risk Assessment Guide for Microsoft Cloud,Retrieved from https:/ 15 Copyright 2024,Cloud Security Alliance.All rights reserved.security groups and network access control lists are properly restricting access,whether identity and access management are working as intended,and whether vulnerabilities discovered in a timely manner and are properly managed.HDOs must map their risk and controls framework to a framework that addresses cloud risks in a standardized way.If HDOs existing risk assessment model does not address the specific challenges of cloud computing,it can benefit from a broadly adopted and standardized framework,such as ISO 27001,COBIT,and NIST.To better understand the potential threats and risks related to cloud computing platforms,refer to the CSA“Top Threats to Cloud Computing Pandemic Eleven”report15.This report provides insights into the most significant security challenges cloud users and providers face,including data breaches,misconfigurations,insecure interfaces and APIs,and insider threats.By being aware of these threats,organizations can take proactive measures to mitigate risks and enhance their cloud security posture.ComplianceCloud Compliance refers to the guidelines,laws,and regulations designed to protect and regulate information stored on the cloud platforms.For HDOs,this refers to regulations and laws covering both security and privacy.This includes how data is stored,protected,and used.It must be protected whether its PII,PHI,or Payment Card Industry(PCI)data.Cloud compliance is about ensuring that utilization of cloud services meets compliance requirements.When HDOs use cloud computing,they are not outsourcing their compliance responsibilities to the CSP.Regulatory agencies and customers can still hold them responsible as HDOs are accountable for compliance with legal,statutory,regulatory,and contractual obligations.16In the U.S.,you confront industry-specific or legal-area-specific rules when confronting federal regulations.That is,each form of information has its own set of rules.PHI in the U.S.has the Health Insurance Portability and Accountability Act(HIPAA).For PCI,its the PCI Data Security Standards(PCI DSS).Different countries have national laws for protecting the PII of their data subjects.This covers data stored within the country and outside their country.In the U.S.,while there are not always comprehensive national laws for all compliance requirements,each state has its requirements.For example,requirements regarding protecting personal information most prominently in California with the California Consumer Protection Act.Also,Maine with the Maine Act to Protect the Privacy of Online Consumer Information,and Nevada with the Nevada Senate Bill 220 Online Privacy Law.1715 Cloud Security Alliance,2023.Top Threats to Cloud Computing Pandemic Eleven,Retrieved from https:/cloudsecurityalliance.org/artifacts/top-threats-to-cloud-computing-pandemic-eleven16 Shacklett,M.,2023.What is Cloud Compliance?A Comprehensive Guide,Retrieved from https:/ Moschovitis,C.,2021.Privacy Regulations and Cybersecurity:The Essential Business Guide,JohnWiley&Sons,Inc.,New Jersey16 Copyright 2024,Cloud Security Alliance.All rights reserved.Besides the U.S.regulations,Canada and Mexico have their own regulations.Canada has two major privacy legislation:The Privacy Act and the Personal Information Protection and Electronic Documents Act.In Mexico,The Federal Law on the Protection of Personal Data held by Private Parties has since been enhanced with The General Law on the Protection of Personal Data in Possession of Obligated Subjects.The European Union has implemented the General Data Protection Regulation(GDPR),which defines PII and requires transparency in processing.The directive also prohibits the transfer of PII to any country that did not demonstrate adequate protection.The following chart shows how the GDPR applies.Figure 4:Territorial scope of the GDPR18The list of regulations presented gives the reader an idea of the vast array of regulations that must be considered when identifying compliance requirements.This is just a small sample of the requirements;the HDO needs to research the requirements for their specific locations for data storage and subjects.Healthcare organizations often rely on third-party vendors and service providers for various IT services.Its essential to assess the security posture of third-party vendors,conduct due diligence on their security practices,and establish contractual agreements that outline security responsibilities and compliance requirements.18 Varankevich,S.,2017.Territorial Scope of GDPR,Retrieved from https:/ the processing relate to monitoring the behavior in EU?Does the processing relate to offering goods or services?Is the data subject currently traveling in EU?GDPR doesnt applyDoes the data subject reside or stay in EU?Is the company in the EU?GDPR appliesNoNoNoNoYesYesYesYesNoYes117 Copyright 2024,Cloud Security Alliance.All rights reserved.Implementing an effective cloud compliance policy is crucial for organizations to ensure security and regulatory adherence to their cloud environments.HDOs should establish clear compliance objectives aligned with industry regulations and their specific business requirements.HDOs can identify potential security risks and compliance gaps by conducting a comprehensive risk assessment.Developing well-defined and documented policies and procedures is essential.These policies should cover access controls,encryption,data handling,incident response and management,change management,vulnerability management,and data breach notification.Continuous monitoring of the cloud environment helps promptly identify and rectify noncompliance issues or security incidents.19Integration of Ethical Considerations in GRCAs technology continues to permeate all aspects of healthcare,ethical considerations become increasingly critical.It is essential to integrate ethical guidelines into the GRC framework to address issues,such as data privacy,patient consent,and algorithmic biases in AI applications.This integration ensures that technological advancements benefit patients without compromising their rights or autonomy.Cloud Compliance FrameworksThese frameworks speak specifically to cloud compliance requirements.Both cloud vendors and customers should have in-depth knowledge of these frameworks including globally adopted framework and local countrys regulatory framework.Global Cloud FrameworksCloud Controls Matrix(CCM):The Cloud Security Alliance(CSA)published the CCM,providing a framework for assessing cloud security.This foundational grouping of security controls,created by CSA,provides a basic guideline for security vendors.Additionally,this framework helps customers appraise the risk posture of prospective cloud vendors.CSA also developed a certification program called Security,Trust,Assurance,and Risk(STAR).The STAR Registry is a publicly accessible registry that documents the security and privacy controls provided by popular cloud offerings.Federal Risk and Authorization Management Program(FedRAMP):FedRAMP is a government-wide program that provides a standardized approach to security assessment,authorization,and continuous monitoring of cloud products and services.Meeting this set of cloud-specific data security regulations is necessary for organizations looking to do business with any federal agency.ISO/IEC 27017:The International Organization for Standardization(ISO)published multiple standards on cybersecurity,among which ISO/IEC 27017:2015 is the standard that provides guidelines for information security controls for cloud services.19 Sutradhar C.,2023.Cloud Compliance-Protecting Your Data and Maintaining Trust,Retrieved from https:/ 18 Copyright 2024,Cloud Security Alliance.All rights reserved.Cloud compliance frameworks help you navigate the regulatory landscape and avoid the financial and reputational cost of non-compliance.Additionally,these frameworks provide the guidelines and structure necessary for maintaining the level of security your customers demand.By implementing a compliance framework,HDOs can demonstrate their commitment to privacy and data protection.This will help regulators boost credibility and trust with their patients and third-party partners.20Local Regulatory FrameworksThere are many country-specific cloud frameworks.Here are examples.Two Guidelines from Three Ministries(2G3M):In Japan,the government regulates medical institutions practices on securing medical information with third-party service providers,cloud service providers,and the applicable party.It defines that cloud service providers have obligations to review measures on cloud risk management with two guidelines released by two Japanese government ministries:Guideline for the Security Management of Medical Information Systems version 5.1(Jan,2021)by Ministry of Health,Labor&Welfare Safety Management Guideline for Information Systems and Service Providers Handling Medical Information(Aug,2020)by Ministry of Economy,Trade&IndustryHbergeur de Donnes de Sant(HDS):In France,HDS certification is introduced by the French governmental agency.It requires service providers hosting PHI to follow their framework to ensure secure protection of PHI.Maintenance in operational condition of physical sites for hosting the physical infrastructure Maintenance in operational condition of the application platform hosting the information system Maintenance in operational condition of the virtual infrastructure of the information system used for the processing of health data Administration and operation of the information system containing the health data Backup of health data20 Knowles,M.,2023.Cloud Compliance Frameworks:What You Need to Know,Retrieved from https:/hyperproof.io/resource/cloud-compliance-frameworks/19 Copyright 2024,Cloud Security Alliance.All rights reserved.ConclusionGovernance,Risk,and Compliance(GRC)is a set of processes,practices,frameworks,and technologies that helps Healthcare Delivery Organizations(HDOs)structure their approach to governance,risk management,and regulatory compliance.The goal is to unify and align the organizations risk management and regulatory compliance efforts.A well-planned GRC strategy can help HDOs achieve several benefits.When adopting cloud computing,it becomes essential for HDOs to diligently identify their security requirements,assess the service providers security and privacy controls,and understand shared responsibilities and compliance inheritance.By thoroughly understanding the compliance requirements and performing a complete risk assessment,HDOs can lay the foundation for a secure and compliant cloud adaptation.GRC can help align performance activities with business goals,manage enterprise risk,and meet compliance regulations,ensuring a safe and secure environment for healthcare delivery.20 Copyright 2024,Cloud Security Alliance.All rights reserved.ReferencesAncoris,2023.Cloud Governance Framework:How to Develop,Implement and Follow One,Retrieved from https:/ Governance Success:A Practical Framework to Getting Started with Cloud Data Governance,Retrieved from https:/ Capgemini,2021.Cloud Governance Guide-Business Aligned Approach to Cloud Utilization,Retrieved from https:/ Mellon University,2016.Cyber Resilience Review Supplemental Resource Guide:Risk Management,Department of Homeland SecurityCloud Security Alliance,2023.Top Threats to Cloud Computing Pandemic Eleven,Retrieved from https:/cloudsecurityalliance.org/artifacts/top-threats-to-cloud-computing-pandemic-elevenHealth Security,2020.Healthcare Challenges in the Era of Cybersecurity,Retrieved from https:/bioethics network.org/sites/default/files/webinar/documents/hs.2019.0123.pdfISACA,2014.Controls&Assurance in the Cloud:Using COBIT 5.New York:ISACA.ISACA,2012.Guiding Principles for Cloud Computing Adoption and Use,Retrieved from https:/www.eurogeography.eu/SoC/sofia-workshop/SoC-implementation/ISACA-Guiding-Principles.pdfIorga,M.,Karmel,A.,Managing Risk in a Cloud Ecosystem,doi.org/10.1109/MCC.2015.122 Karkokov,S.&Feuerlicht G.,2016.Cloud Computing Governance Lifecycle,Acta Informatica Pragensia,5(1):5671 DOI:10.18267/j.aip.85 Knowles,M.,2023.Cloud Compliance Frameworks:What You Need to Know,Retrieved from https:/hyperproof.io/resource/cloud-compliance-frameworks/Microsoft,2023.Risk Assessment Guide for Microsoft Cloud,Retrieved from https:/ Moschovitis,C.,2021.Privacy Regulations and Cybersecurity:The Essential Business Guide,John Wiley&Sons,Inc.,New JerseyObject Management Group,2019.Practical Guide to Cloud Governance,Retrieved from https:/www.omg.org/cloud/deliverables/practical-guide-to-cloud-governance.pdf 21 Copyright 2024,Cloud Security Alliance.All rights reserved.Rasner,G.,2021.Cybersecurity&Third-Party Risk:Third-Party Threat Hunting,John Wiley&Sons,Inc.,Hoboken,NJ.Shacklett,M.,2023.What is Cloud Compliance?A Comprehensive Guide,Retrieved from https:/ C.,2023.Cloud Compliance-Protecting Your Data and Maintaining Trust,Retrieved from https:/ Scope of GDPR,Retrieved from https:/
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