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PrEP-Stigma: What can we learn from Toronto’s ‘first wave’ of PrEP users?

Background

While barriers to access remain, PrEP is becoming increasingly available across Canada. We set out to learn from the experiences of gay men in Toronto who were part of the ‘first wave’ of PrEP users in Canada.

Methods

For this qualitative study, we recruited 16 participants who were part of a PrEP demonstration project in Toronto, which ran from November 2014 to June 2016.

We conducted a combination of small focus groups and individual qualitative interviews to understand participants’ experiences with PrEP over time.

All participants had been taking PrEP for at least one year at the time of their interview.

Summary of Findings

Rather than experiencing stigma or shame, many participants discussed feeling “proud” and “liberated” because of their PrEP use. For some men, PrEP was described as allowing for liberating, exciting, and pleasurable sex that was no longer reliant on condom use.

While the experiences of PrEP use were described as positive overall, sex-stigma emerged as a complex theme.

PrEP-related stigma and the PrEP closet
A key overarching assumption men described was that for many people in their social and sexual networks, PrEP use was equated with having bareback or condomless anal sex. Men described how they have had to manage this assumption regardless of whether or not they are (exclusively) having condomless sex while on PrEP.

Some participants described how PrEP-related stigma, or stigma related to having multiple sexual partners, has led them not to tell friends and/or family about PrEP use, creating a kind of PrEP closet.

PrEP and HIV-related stigma
Some men talked about both condomless sex between men and sex with people living with HIV being stigmatized. Participants discussed how their PrEP use caused them to reflect on and challenge internalized stigma or taboos they had in relation to persons living with HIV.

A number of men explained that they no longer asked sexual partners about HIV status because they were taking PrEP. Some participants also discussed their perceptions that PrEP lessened feelings of stigma and rejection among gay men who are HIV positive.

PrEP and structural stigma
Participants described how PrEP sometimes exposed broader structural forms of stigma connected to sex and gay sexuality. In some cases, stigma related to PrEP and gay sexuality was discussed as a persistent structural barrier to broader PrEP awareness and access.

Some men described encountering judgment both from within their social and sexual networks and from some healthcare providers during their initial attempts to access PrEP.

Implications

Our interviews make explicit how PrEP was experienced in relation to stigma in complex ways: PrEP being both a kind of (internalized) stigma fighter and something linked to experiences of stigma and sexual morality, repeating some gay men’s experiences with having “something to hide” regarding their sexuality.

It is important to reflect on the public health significance of some men on PrEP no longer discussing HIV status with sexual partners. While this reported change in behavior may be intended as a form of social progress—aimed at destigmatizing HIV positivity—there may also be potential unintended consequences of this behavior if more widespread, since knowing the HIV status of oneself and one’s partners is important to selecting appropriate HIV prevention strategies.

We have revealed a paradox in participants’ narratives: men said that PrEP use led them to experience stigmatizing reactions within their social and sexual networks, while also describing PrEP as helping to remove stigma, shame, and fear related to HIV, sexuality, and sex with gay men living with HIV.

Successfully advocating for broader PrEP access requires that societal and structural stigma surrounding gay sexuality be addressed head on. These accounts of PrEP use help to shed light on broader stigmas and moral panics around sex and sexuality, which may serve to negatively impact both the availability and uptake of PrEP and the health of diverse communities, including gay men.

For more information

For more information about these findings, including excerpts from interviews with study participants, please see the full article (Open Access):

Contact: Daniel.Grace(at)utoronto.ca

This study was supported by the Canadian Institutes of Health Research (CIHR).

 

Categories: New knowledge

Search related content: HIV, PrEP, stigma, research

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