“I would really want to know that they had my back”: Transgender women’s perceptions of HIV cure-related research in the United States

Abstract

Forty-four percent of Black transgender women are living with HIV, and many face challenges with HIV care engagement. An HIV cure has much to offer this population, however little HIV cure-related research has included them. We conducted 19 face-to-face in-depth interviews with 10 Black transgender women living with HIV. Interviews were audio recorded, transcribed verbatim, coded, and analyzed using content analysis. Our interview guide contained three categories: 1) perceptions of HIV cure-related research and participation, 2) perceptions of HIV treatment and treatment interruptions, and 3) considerations for transgender women and HIV cure-related research. Salient themes included skepticism about HIV cure strategies and limited benefits compared with an undetectable viral load. Willingness to interrupt HIV treatment for research was low and linked to being able to go back on the same HIV treatment without consequence when the study ended. Concerns about being a test subject and perceptions of risks versus benefits of various strategies also affected willingness to take part in HIV cure-related research. Centering the dignity and autonomy of research participants as well as building upon and supporting existing social networks were identified as important facilitators for engaging Black transgender women in HIV cure-related research. Specific to Black transgender women, other concerns included the desire for gender-affirming research staff, community-building among transgender women, and safety issues associated with risk of transphobic violence when traveling to study visits. Participants stressed the importance of HIV cure-related researchers providing accessible and complete information and expressing genuine care and concern for transgender communities.