Most HIV Patients Trust Their Providers But Don’t Always Feel Heard, Survey Says

Trust and communication between HIV patients and their providers are essential parts of successful treatment; however, patients sometimes feel ignored at appointments, and some are lacking important information about managing their disease, according to the first set of results from ViiV Healthcare’s Positive Perspectives 3 survey, released today.

Approximately 80% of patients trust their healthcare providers, but 48% reported that they sometimes felt unheard at appointments. Additionally, 40% of patients do not discuss their antiretroviral (ART) regimen at appointments, the news release says. The data also showed that despite 94% of patients being aware of the ‘undetectable = untransmittable’ (U=U) nature of HIV, only 58% believe it.

The U=U initiative, launched in 2016 by the Prevention Access Campaign, is built on the fact that if a person with HIV takes their ART medication and has an undetectable viral load, then their HIV cannot be transmitted. In addition to only 58% of participants reporting that they believe this, approximately a third (31%) of respondents were unable to explain U=U to others.

Most survey participants reported they were satisfied with their ART regimen, but there were some concerns about side effects. Over half (53%) were concerned about the long-term effects of ART, 49% were unhappy with ART-related weight gain and 43% said ART was a daily reminder of their HIV diagnosis.

Higher patient treatment satisfaction was associated with better HIV health outcomes, and patients were less likely to intentionally skip ART doses. Belief in U=U was connected to more enjoyable sex and the reduction of internal and external stigma, the release says.

“The Positive Perspectives 3 data highlight the need for healthcare professionals to have meaningful conversations with their patients that go beyond just viral suppression - conversations that empower people living with HIV to confidently share their needs, preferences, and goals with their medical providers,” David Hardy, M.D., clinical professor of family medicine at the Keck School of Medicine of the University of Southern California, said in the news release. “Ensuring that people with HIV fully understand critical concepts like ‘Undetectable = Untransmittable’ is essential to achieving this kind of communication, so we can improve the quality of HIV care and support people with HIV to live healthier, more fulfilling lives.”

Phase 3 of the Positive Perspectives study included 698 participants across 16 countries, including the United States, the United Kingdom and Canada. Once complete, it will be one of the largest surveys of HIV patients and include more than 3,000 people living with HIV, personnel in HIV patient organizations and youth living with HIV from across 29 countries, the release states.

This first set of results was presented at the 16th AIDSImpact Conference, held May 26-28 in Casablanca, Morocco. Additional data will be presented at the International AIDS Society Conference on HIV Science (IAS) and the European AIDS Clinical Society Conference (EACS) in July 2025 and October 2025, respectively.