“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

Abstract

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.