Social engagement in HIV cure (research) in the Netherlands: understanding the perceived necessity and concerns of people with HIV

Abstract

Objective: As the developments towards HIV cure are gaining prominence, engagement of people with HIV (PWH) becomes crucial. This study aims to gain deeper insight into how PWH engage with HIV cure (research) by exploring their perspectives regarding awareness, importance, and meaning of HIV cure (research). Methods: Semi-structured interviews were conducted with 30 purposively sampled PWH in the Netherlands. Interviews were transcribed verbatim and thematic data analysis was undertaken. Results: The overall necessity for an HIV cure was high, but personal perceived necessity varied based on participants’ lived experiences with HIV. Most participants saw less personal necessity due to their high quality of life, while those more affected by their HIV status expressed a stronger need for a cure. Participants held high expectations for an HIV cure, considering viral eradication as the only cure. Lack of awareness of potential HIV cure strategies and techniques shaped concerns. Antiretroviral treatment-free viral suppression was met with concerns and not considered a cure, but rather an improved form of treatment. Engagement with HIV cure manifested in various forms and levels, with only a few participants actively engaged or willing to participate in HIV cure clinical research. Most participants were interested but inactive and unsure about participating in HIV cure clinical research. Conclusions: PWH’s social engagement in HIV cure (research) is shaped by their perceived necessity and concerns. Understanding these perceptions can increase social engagement.