Ali Ahmed, Jeff Taylor, Sithara Deshan Diunugala, Rachel Lau, Joyce Ching-Jung Lai, Michael Louella, Jeff Berry, Tricia H Burdo, Michael J Peluso, Lynda Dee, Karine Dubé
{"title":"“有时他们因为我们的年龄而排斥我们——这是不对的”:美国不同长期幸存者对艾滋病治疗研究的看法。","authors":"Ali Ahmed, Jeff Taylor, Sithara Deshan Diunugala, Rachel Lau, Joyce Ching-Jung Lai, Michael Louella, Jeff Berry, Tricia H Burdo, Michael J Peluso, Lynda Dee, Karine Dubé","doi":"10.1089/aid.2024.0117","DOIUrl":null,"url":null,"abstract":"<p><p>HIV cure research has advanced, utilizing analytical treatment interruption (ATI) as a research tool alongside therapeutic strategies such as latency-reversing agents, block and lock strategies, immune-based therapies, cell and gene therapies, and combination approaches to overcome viral persistence. While promising, participation in cure trials remains limited, particularly for long-term survivors (LTS) who have lived with HIV for decades. Many LTS are willing to participate but face barriers such as age-based exclusions, comorbidities, and trial design constraints. With over half of the people with HIV in the United States aged 50 or older, addressing these barriers is crucial to designing inclusive, equitable, and representative cure trials. We conducted 32 semi-structured interviews with LTS of HIV, aged 60 years and older, recruited through community-based organizations and research networks across the United States. Participants were diverse in age, sex, gender, race, and ethnicity. We transcribed, anonymized, and analyzed interviews thematically. Most participants expressed a willingness to participate in HIV cure research, driven by a sense of responsibility and hope for future generations. However, concerns were raised about age-based exclusions from HIV cure trials, which many participants viewed as unjust given their long-term experience with HIV and commitment to finding a cure that could potentially benefit people of their age. Additional concerns included the risks of ATIs, such as viral rebound and the development of viral resistance, along with logistical challenges, including transportation and invasiveness of certain procedures. Despite these barriers, most LTS indicated they would participate in HIV cure trials if researchers addressed their concerns about safety, accessibility, and inclusion. LTS emphasized the need for transparent communication, clear informed consent, and flexible trial designs that accommodate their needs. By addressing these concerns, researchers can engage LTS more meaningfully in HIV cure research, enriching the field and promoting more inclusive and ethical study designs.</p>","PeriodicalId":7544,"journal":{"name":"AIDS research and human retroviruses","volume":" ","pages":""},"PeriodicalIF":1.5000,"publicationDate":"2025-04-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"\\\"Sometimes They Exclude Us because of Our Age-That's Not Right\\\": Perceptions of HIV Cure Research Among Diverse Long-Term Survivors in the United States.\",\"authors\":\"Ali Ahmed, Jeff Taylor, Sithara Deshan Diunugala, Rachel Lau, Joyce Ching-Jung Lai, Michael Louella, Jeff Berry, Tricia H Burdo, Michael J Peluso, Lynda Dee, Karine Dubé\",\"doi\":\"10.1089/aid.2024.0117\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>HIV cure research has advanced, utilizing analytical treatment interruption (ATI) as a research tool alongside therapeutic strategies such as latency-reversing agents, block and lock strategies, immune-based therapies, cell and gene therapies, and combination approaches to overcome viral persistence. 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"Sometimes They Exclude Us because of Our Age-That's Not Right": Perceptions of HIV Cure Research Among Diverse Long-Term Survivors in the United States.
HIV cure research has advanced, utilizing analytical treatment interruption (ATI) as a research tool alongside therapeutic strategies such as latency-reversing agents, block and lock strategies, immune-based therapies, cell and gene therapies, and combination approaches to overcome viral persistence. While promising, participation in cure trials remains limited, particularly for long-term survivors (LTS) who have lived with HIV for decades. Many LTS are willing to participate but face barriers such as age-based exclusions, comorbidities, and trial design constraints. With over half of the people with HIV in the United States aged 50 or older, addressing these barriers is crucial to designing inclusive, equitable, and representative cure trials. We conducted 32 semi-structured interviews with LTS of HIV, aged 60 years and older, recruited through community-based organizations and research networks across the United States. Participants were diverse in age, sex, gender, race, and ethnicity. We transcribed, anonymized, and analyzed interviews thematically. Most participants expressed a willingness to participate in HIV cure research, driven by a sense of responsibility and hope for future generations. However, concerns were raised about age-based exclusions from HIV cure trials, which many participants viewed as unjust given their long-term experience with HIV and commitment to finding a cure that could potentially benefit people of their age. Additional concerns included the risks of ATIs, such as viral rebound and the development of viral resistance, along with logistical challenges, including transportation and invasiveness of certain procedures. Despite these barriers, most LTS indicated they would participate in HIV cure trials if researchers addressed their concerns about safety, accessibility, and inclusion. LTS emphasized the need for transparent communication, clear informed consent, and flexible trial designs that accommodate their needs. By addressing these concerns, researchers can engage LTS more meaningfully in HIV cure research, enriching the field and promoting more inclusive and ethical study designs.
期刊介绍:
AIDS Research and Human Retroviruses was the very first AIDS publication in the field over 30 years ago, and today it is still the critical resource advancing research in retroviruses, including AIDS. The Journal provides the broadest coverage from molecular biology to clinical studies and outcomes research, focusing on developments in prevention science, novel therapeutics, and immune-restorative approaches. Cutting-edge papers on the latest progress and research advances through clinical trials and examination of targeted antiretroviral agents lead to improvements in translational medicine for optimal treatment outcomes.
AIDS Research and Human Retroviruses coverage includes:
HIV cure research
HIV prevention science
- Vaccine research
- Systemic and Topical PreP
Molecular and cell biology of HIV and SIV
Developments in HIV pathogenesis and comorbidities
Molecular biology, immunology, and epidemiology of HTLV
Pharmacology of HIV therapy
Social and behavioral science
Rapid publication of emerging sequence information.