{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,12]],"date-time":"2026-10-12T17:05:36Z","timestamp":1791824736008,"version":"4.3.4"},"reference-count":40,"publisher":"Wiley","issue":"7","license":[{"start":{"date-parts":[[2025,7,3]],"date-time":"2025-07-03T00:00:00Z","timestamp":1751500800000},"content-version":"vor","delay-in-days":2,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J Int AIDS Soc."],"published-print":{"date-parts":[[2025,7]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>Long\u2010term survivors (LTS) of HIV, including individuals diagnosed before the availability of effective antiretroviral therapy (ART), have played a pivotal role in shaping the HIV response. Despite an increase in their number in the United States, their unique medical, social and economic challenges remain underrepresented in HIV policy and research, particularly in the context of HIV cure advancements. While an HIV cure may alleviate ART\u2010related burdens, LTS fear unintended consequences, including the potential loss of critical social benefits, economic support and healthcare access. This study explores the policy priorities of LTS, addressing their current unmet needs and the broader implications of an HIV cure.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>We conducted qualitative interviews with 32 LTS across diverse racial, gender and geographic backgrounds, recruited through community\u2010based organizations and research networks from 2023 to 2024. Using inductive thematic analysis, we identified key policy concerns and recommendations based on participants\u2019 lived experiences. Data collection continued until thematic saturation was reached.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>LTS emphasized four pressing policy domains: (1) Persistent Healthcare Disparities: Participants reported fragmented Medicare and Medicaid coverage, limited access to essential services (e.g. dental, vision and mental healthcare), and ongoing stigma and discrimination in healthcare settings. (2) Social and Economic Precarity: Housing instability, financial insecurity and employment barriers disproportionately affect LTS, many of whom face systemic barriers to re\u2010entering the workforce. (3) Policy Implications of an HIV Cure: Participants voiced concerns that an HIV cure, while promising, could result in disqualification from disability and social assistance programmes, exacerbating socio\u2010economic vulnerabilities. (4) Structural Reforms for LTS Inclusion: LTS underscored the urgent need for their direct involvement in HIV research, policy development and decision\u2010making to ensure equitable, community\u2010driven solutions.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Policymakers must address comprehensive healthcare access, economic stability and social protections for LTS of HIV. HIV cure research must not undermine existing benefits or widen disparities. Ensuring LTS representation in decision\u2010making is critical to developing equitable policies that safeguard their wellbeing before and after a cure.<\/jats:p><\/jats:sec>","DOI":"10.1002\/jia2.70006","type":"journal-article","created":{"date-parts":[[2025,7,4]],"date-time":"2025-07-04T01:38:52Z","timestamp":1751593132000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["\u201cA cure might help, but it won't erase it all\u201d: a qualitative study of policy challenges and priorities for long\u2010term survivors of HIV in the United States"],"prefix":"10.1002","volume":"28","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8964-1853","authenticated-orcid":false,"given":"Ali","family":"Ahmed","sequence":"first","affiliation":[{"name":"Division of Infectious Diseases and Global Public Health School of Medicine University of California San Diego (UCSD)  La Jolla California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jeff","family":"Taylor","sequence":"additional","affiliation":[{"name":"HIV + Aging Research Project \u2013 Palm Springs (HARP\u2010PS)  Palm Springs California USA"},{"name":"Reversing Immune Dysfunction for HIV\u20101 (RID\u2010HIV) Eradication Martin Delaney Collaboratory Community Engagement Coordination and Community Advisory Board  San Diego California USA"},{"name":"Long\u2010Term Survivor of HIV, Nationawide  USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rachel","family":"Lau","sequence":"additional","affiliation":[{"name":"Division of Infectious Diseases and Global Public Health School of Medicine University of California San Diego (UCSD)  La Jolla California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joyce Ching\u2010Jung","family":"Lai","sequence":"additional","affiliation":[{"name":"Division of Infectious Diseases and Global Public Health School of Medicine University of California San Diego (UCSD)  La Jolla California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sithara","family":"Deshan Diunugala","sequence":"additional","affiliation":[{"name":"Division of Infectious Diseases and Global Public Health School of Medicine University of California San Diego (UCSD)  La Jolla California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael","family":"Louella","sequence":"additional","affiliation":[{"name":"Reversing Immune Dysfunction for HIV\u20101 (RID\u2010HIV) Eradication Martin Delaney Collaboratory Community Engagement Coordination and Community Advisory Board  San Diego California USA"},{"name":"University of Washington Center for AIDS Research (CFAR)  Seattle Washington USA"},{"name":"Delaney AIDS Research Enterprise (DARE) Martin Delaney Collaboratory Community Engagement Coordination and Community Advisory Board  San Francisco California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6471-4200","authenticated-orcid":false,"given":"Thomas J.","family":"Villa","sequence":"additional","affiliation":[{"name":"Reversing Immune Dysfunction for HIV\u20101 (RID\u2010HIV) Eradication Martin Delaney Collaboratory Community Engagement Coordination and Community Advisory Board  San Diego California USA"},{"name":"Long\u2010Term Survivor of HIV, Nationawide  USA"},{"name":"HIV Obstruction by Programmed Epigenetics (HOPE) Delaney Collaboratory Community Advisory Board Gladstone Institutes  San Francisco California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"William","family":"Freshwater","sequence":"additional","affiliation":[{"name":"Long\u2010Term Survivor of HIV, Nationawide  USA"},{"name":"AIDS Law Project of Pennsylvania  Philadelphia Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dawn","family":"Averitt","sequence":"additional","affiliation":[{"name":"Long\u2010Term Survivor of HIV, Nationawide  USA"},{"name":"The Well Project and Women's Research Initiative on HIV\/AIDS (WRI)  Brooklyn New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maile","family":"Karris","sequence":"additional","affiliation":[{"name":"Division of Infectious Diseases and Global Public Health School of Medicine University of California San Diego (UCSD)  La Jolla California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jeff","family":"Berry","sequence":"additional","affiliation":[{"name":"Long\u2010Term Survivor of HIV, Nationawide  USA"},{"name":"CRISPR for Cure Martin Delaney Collaboratory Community Advisory Board  Philadelphia Pennsylvania USA"},{"name":"The Reunion Project  Calabasas California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lynda","family":"Dee","sequence":"additional","affiliation":[{"name":"Delaney AIDS Research Enterprise (DARE) Martin Delaney Collaboratory Community Engagement Coordination and Community Advisory Board  San Francisco California USA"},{"name":"AIDS Action Baltimore  Baltimore Maryland USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3458-1539","authenticated-orcid":false,"given":"Karine","family":"Dub\u00e9","sequence":"additional","affiliation":[{"name":"Division of Infectious Diseases and Global Public Health School of Medicine University of California San Diego (UCSD)  La Jolla California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,7,3]]},"reference":[{"key":"e_1_2_12_2_1","unstructured":"The Well Project.Long\u2010term survivors of HIV.2023.https:\/\/www.thewellproject.org\/hiv\u2010information\/long\u2010term\u2010survivors\u2010hiv. Accessed 12\/30\/2024."},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1089\/aid.2024.0117"},{"key":"e_1_2_12_4_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12879-024-09406-w"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.1097\/QAD.0000000000003831"},{"key":"e_1_2_12_6_1","doi-asserted-by":"publisher","DOI":"10.1097\/COH.0000000000000615"},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12981-024-00667-8"},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ijantimicag.2021.106493"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2352-3018(20)30232-0"},{"key":"e_1_2_12_10_1","doi-asserted-by":"publisher","DOI":"10.2105\/AJPH.2015.302905"},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.3390\/healthcare12100992"},{"key":"e_1_2_12_12_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41591-021-01590-5"},{"key":"e_1_2_12_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jve.2023.100360"},{"key":"e_1_2_12_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jve.2022.100072"},{"key":"e_1_2_12_15_1","doi-asserted-by":"publisher","DOI":"10.1089\/aid.2017.0318"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.1097\/QAI.0000000000003365"},{"key":"e_1_2_12_17_1","doi-asserted-by":"publisher","DOI":"10.1002\/jia2.25404"},{"key":"e_1_2_12_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.tim.2015.10.011"},{"key":"e_1_2_12_19_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0254148"},{"key":"e_1_2_12_20_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12910-021-00651-1"},{"key":"e_1_2_12_21_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732320921143"},{"key":"e_1_2_12_22_1","volume-title":"Qualitative inquiry and research design: choosing among five approaches","author":"Creswell JW","year":"2016"},{"key":"e_1_2_12_23_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732305276687"},{"key":"e_1_2_12_24_1","doi-asserted-by":"publisher","DOI":"10.1177\/1525822X05279903"},{"key":"e_1_2_12_25_1","doi-asserted-by":"publisher","DOI":"10.7748\/nr.2024.e1924"},{"key":"e_1_2_12_26_1","unstructured":"TroutH.The San Francisco Principles 2020: addressing the unmet needs of long\u2010term HIV survivors in San Francisco.2020.https:\/\/drive.google.com\/file\/d\/1DvXVueIEtlUQpWZJIokhV54qRaSg5cdT\/view. Accessed 13 Mar 2025."},{"key":"e_1_2_12_27_1","doi-asserted-by":"publisher","DOI":"10.1097\/JNC.0000000000000042"},{"key":"e_1_2_12_28_1","doi-asserted-by":"publisher","DOI":"10.1097\/JNC.0000000000000317"},{"key":"e_1_2_12_29_1","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-030-48744-7_8"},{"key":"e_1_2_12_30_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0306322"},{"key":"e_1_2_12_31_1","doi-asserted-by":"publisher","DOI":"10.2105\/AJPH.2012.301161"},{"key":"e_1_2_12_32_1","doi-asserted-by":"publisher","DOI":"10.1159\/000448567"},{"key":"e_1_2_12_33_1","unstructured":"KeyesO.House appropriations bills would devastate efforts to end the HIV epidemic.2024.https:\/\/aidsunited.org\/house\u2010appropriations\u2010bills\u2010would\u2010devastate\u2010efforts\u2010to\u2010end\u2010the\u2010hiv\u2010epidemic\/. Accessed 01\/28\/2025."},{"key":"e_1_2_12_34_1","doi-asserted-by":"publisher","DOI":"10.1521\/aeap.2021.33.4.265"},{"key":"e_1_2_12_35_1","unstructured":"BerryJ.The Reunion Project (TRP); The Chicago Report: Long\u2010Term Survivors: Sharing Wisdom & Shaping Legacies.2024.https:\/\/drive.google.com\/file\/d\/1HmP6d0V_7J4m85T\u2010ZOh7xtU21EAHSzGl\/view. Accessed 01\/02\/2025."},{"key":"e_1_2_12_36_1","doi-asserted-by":"publisher","DOI":"10.2105\/AJPH.2018.304772"},{"key":"e_1_2_12_37_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0239190"},{"key":"e_1_2_12_38_1","doi-asserted-by":"publisher","DOI":"10.7448\/IAS.18.1.20305"},{"key":"e_1_2_12_39_1","doi-asserted-by":"publisher","DOI":"10.1089\/aid.2022.0036"},{"key":"e_1_2_12_40_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2024.117644"},{"key":"e_1_2_12_41_1","unstructured":"The Well Project. Women and HIV in the current US climate: opportunities and challenges in policy and research.2021.https:\/\/www.thewellproject.org\/hiv\u2010information\/wri\u2010virtual\u20102021\u2010hiv\u2010women\u2010and\u2010policy\u2010new\u2010administration. Accessed 01\/11\/2025."}],"container-title":["Journal of the International AIDS Society"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/jia2.70006","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,7,26]],"date-time":"2025-07-26T03:41:49Z","timestamp":1753501309000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/jia2.70006"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,7]]},"references-count":40,"journal-issue":{"issue":"7","published-print":{"date-parts":[[2025,7]]}},"alternative-id":["10.1002\/jia2.70006"],"URL":"https:\/\/doi.org\/10.1002\/jia2.70006","archive":["Portico"],"relation":{},"ISSN":["1758-2652","1758-2652"],"issn-type":[{"value":"1758-2652","type":"print"},{"value":"1758-2652","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,7]]},"assertion":[{"value":"2025-02-06","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-06-23","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-07-03","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e70006"}}