“It’s not just HIV anymore”: A qualitative exploration of health, research, community and mental health priorities of long-term survivors of HIV in the United States

<b>ABSTRACT</b>Long-term survivors (LTS) of HIV are people diagnosed before the advent of highly active antiretroviral therapy in 1996 or who have lived with HIV for more than ten years. As they age, many experience comorbidities and effects of lifelong therapy, yet they remain underrepresented in research, which limits person-centered strategies. We examined priorities related to health, aging, safer antiretroviral therapy, community, mental health, and research engagement among LTS in the United States, and explored how social determinants shaped outcomes and access. In 2023 to 2024, we conducted qualitative interviews with 32 LTS aged 60 and above across the country, recruited through community partners and purposively sampled by gender, race, and region. Most participants were community advocates with a mean of 27.4 years since diagnosis. Thematic analysis identified priorities for integrated care addressing HIV alongside age-related comorbidities including cardiovascular disease and cognitive change. Participants emphasized mental health needs including survivor guilt, depression, and anxiety, and called for safer long term antiretroviral options and involvement in research. Housing, food security, and financial stability were social determinants. Findings support person-centered models integrating geriatric expertise, mental health services, and social supports to improve quality of life and resilience among LTS.