HIV Prevention Beyond a Prescription: Experiences and Perspectives on HIV Pre-Exposure Prophylaxis (PrEP) Among Gay, Bisexual, and Other Men Who Have Sex with Men

Background and Purpose: Globally, epidemics of HIV in gay, bisexual, and other men who have sex with men (GBM) continue to expand, with high rates of new infections. New HIV prevention tools integrated in combination prevention strategies that address social and structural drivers of HIV vulnerability are sorely needed. Pre-exposure prophylaxis (PrEP) is a new biomedical HIV prevention technology that is highly effective in reducing the risk of HIV acquisition. Beyond examining PrEP uptake and adherence, it is important to understand the lived experiences of GBM and how PrEP may influence social and sexual relationships. The purpose of this qualitative study was to explore perspectives and decision-making among PrEP users and non-users, and the role of PrEP in shaping their sexual health and well-being within a broader community context.

Methods: From October 2015 to March 2016, we purposively recruited a sample of ethnically-diverse GBM PreP users and non-users in Toronto from community-based organizations, community health clinics, and online. In-depth semi-structured 45-90min interviews explored PrEP perspectives and decision-making, and relational and social dimensions of PrEP use/non-use. Interviews were audio-recorded, transcribed, and analyzed independently by two researchers using thematic content analysis. After multiple readings of transcripts, we conducted open, axial, and thematic coding, using a constant comparative method, until theoretical saturation. Coding differences were resolved by consensus.

Results: Participants (n=29; mean age=36 years) were 15 PrEP users and 14 non-users. Five key themes emerged across users and non-users, often revealing divergent perspectives on the same theme. Trust was central to PrEP decisionmaking: users indicated lack of trust in others’ disclosures about their HIV testing/HIV status as motivating PrEP use; some non-users indicated lack of trust in others’ disclosures about using PrEP as a barrier to sexual relationships with PrEP users. Control: PrEP users described PrEP as asserting personal responsibility and taking control of their sexual health; non-users described managing their own risk behaviors, and PrEP use as abdicating control. Pressure to engage in condomless sex was described by PrEP users and non-users; non-users also indicated feeling pressured to take PrEP. Stigma: PrEP users described internalized stigma about its use and non-users described stigma in being rejected by partners because of not using PrEP, with both aware of negative societal judgments about PrEP users and sexual stigma more broadly. Liberation: many PrEP users described a profound experiential change in being able to engage in (condomless) sex without anxiety about HIV; some non-users viewed PrEP as a ball-and-chain that tethered one to HIV for eternity. 

Conclusions and Implications: Complexities in GBM’s PrEP decisionmaking, and experiences in social and sexual relationships, emerged across PrEP users and non-users, belying a narrow focus on medication adherence and HIV risk/prevention. Social workers can play important roles in increasing awareness about PrEP as an HIV prevention option, and working with GBM to explore the meanings and ramifications of PrEP use/non-use in their lives and relationships. Advocacy and interventions to reduce sexual- and HIV-stigma within and outside GBM communities also may contribute to an enabling environment that supports GBM’s sexual health and relationships.