Community HERO treatment survey: US subanalysis of a global survey on the experiences of people with HIV

This study explored the perspectives of people with HIV (PWH) in the United States regarding barriers and facilitators of engaging with HIV care, focusing on treatment initiation, satisfaction, adherence, and preferences. An observational, cross-sectional, quantitative online survey was conducted from 2024 through 2025 among eligible PWH aged ≥18 years. The survey was carried out globally; we report results from PWH who reside in the United States. Survey questions assessed sociodemographic, sociobehavioral, and clinical characteristics; HIV diagnosis and linkage to care; and HIV treatments and treatment success. The survey included the validated HIV Treatment Satisfaction Questionnaire (HIVTSQ). Results were analyzed for subgroups of interest. Data were summarized descriptively; formal statistical comparisons were conducted. A total of 402 PWH participated in the survey. Rapid antiretroviral therapy (ART) initiation was deemed “important”/“very important” by 93% of participants, yet 73% of PWH ever treated did not start treatment within 7 days of diagnosis and 29% started after >30 days. Common reasons for delayed treatment included fear of side-effects, physician recommendation, and needing time to accept the diagnosis. The median HIVTSQ score for overall treatment satisfaction was 51.0/60.0, with numerically higher satisfaction observed among those aged ≥50 years (57.0), not using drugs (54.0), and on bictegravir/emtricitabine/tenofovir alafenamide (57.0). The most important features to stay on treatment were long-term tolerability and efficacy. Despite the recognized importance of rapid ART initiation, almost one-third of participants ever treated started treatment >30 days after diagnosis. These findings can support tailored strategies to enhance rapid ART initiation and treatment adherence and satisfaction, thereby improving health outcomes for PWH.