Perceptions of Risks and Benefits of Participating in HIV Cure-Related Research Among Diverse Young Adults Living with HIV in the United States: Qualitative Research Findings

In the United States, young adults have the highest rates of new HIV infections, and are less likely to be aware of their infection, be engaged in care, or achieve HIV viral suppression. As biomedical HIV research increasingly focuses on achieving long-term suppression without antiretroviral therapy (ART) and finding an HIV cure, little is known about perceptions of young adults living with HIV (YLWH) regarding HIV cure research. We recruited a diverse sample of 20 YLWH (18-29 years old) to participate in individual semistructured qualitative interviews to explore knowledge and perceptions of HIV cure research, and motivations and barriers to participation. Most participants had little knowledge of HIV cure research. Motivators of HIV cure research participation included altruism, stigma reduction, and the elimination of the clinical burdens of HIV. Barriers included potential physical side effects, psychological distress, the possibility of disclosure as a result of participating, and the amount of time required to participate. Most participants had concerns about analytic treatment interruptions (i.e., ART interruption to assess HIV remission), and indicated that they would want more frequent laboratory testing and protection for their sex partners during this time. Finally, participants suggested that, if other YLWH are considering participation in cure research, they should first learn as much as possible about the research, and then consider the potential personal benefits and the contribution that they could make to science and their communities. As HIV cure research advances, the participation of YLWH will be critical. Our study provides knowledge about how YLWH view HIV cure research. More sociobehavioral research is needed to ensure that those who are most likely to be the decision-makers and beneficiaries of an HIV cure are included at all levels of research.