- Researchers interviewed early adopters of PrEP in Toronto about their experience.
- Participants reported that their use of PrEP left them feeling “proud” and “liberated.”
- Stigma and judgment related to PrEP also led some participants to conceal their use of it.
PrEP (pre-exposure prophylaxis) involves taking two anti-HIV medicines in one pill, usually daily, to reduce the chance of getting HIV. PrEP is meant to be used in combination with other HIV prevention approaches, such as the following:
- risk reduction counselling
- use of condoms
- regular testing for HIV
- screening for sexually transmitted infections and, if necessary, treatment
Detailed information about the use of PrEP can be found here.
Researchers in Toronto conducted a PrEP demonstration project to assess its acceptability, use and effectiveness among 52 gay, bisexual and other men who have sex with men (MSM). Part of this project involved interviewing a subset of participants about the impact of PrEP on their social and sexual lives. From these interviews, researchers found that a large proportion of men felt the need to conceal their use of PrEP from friends, family and sexual partners because of attitudes toward PrEP use. When the men disclosed their use of PrEP, it usually resulted in some degree of negative and complex reactions in their social networks. However, PrEP also allowed the men to experience a sense of normalcy during sex; they found sex free of fear, and, as a result, sex became “exciting and pleasurable.”
Study details
Participants were recruited from a study called Preparatory-5. Prior to being interviewed, participants had been taking PrEP for at least one year between November 2014 and June 2016. Sixteen of the participants agreed to be interviewed. The men were white and gay-identified and their average age was 33 years.
Results—A feeling of liberation
Many participants said that their use of PrEP left them feeling “proud” and “liberated.” According to the researchers, “This idea of pride in being a responsible sexually active gay man and helping to prevent the spread of HIV was a recurrent theme in the men’s accounts.”
One participant stated the following about his PrEP experience:
“It has been one of the greatest things in my life. I have absolutely loved it. I have a lot of sex, and I go to the bathhouses a lot, despite my advanced age…. For the first time in my life [PrEP] has taken away the fear of having sex…. Sex has been liberating again, thanks to PrEP.”
According to the researchers, for the most part, the participants’ accounts of PrEP were associated with feelings of empowerment and liberation. However, they were also tempered by their experience of negative attitudes, beliefs and statements from some people in their social and sexual networks. The researchers divided these negative reactions into the following three themes:
- PrEP-related stigma
- PrEP and HIV-related stigma
- PrEP and structural stigma
We now explore these themes.
PrEP-related stigma
The men disclosed that “for many people in their social and sexual networks, PrEP use was equated with having bareback or condomless sex.” The researchers found that the men they interviewed had to manage this assumption “whether or not they were exclusively having condomless sex while on PrEP.”
Some men, because of the stigma associated with PrEP and/or multiple sexual partners, felt it necessary to withhold telling friends and family about their use of PrEP. According to the researchers, these men felt the need to enter “a kind of PrEP closet.” One man made the following comment:
“I hardly told anybody, just because I know my friends would be judgmental—gay or straight. For someone like me who is as out as me, and I’m about as out as anybody, to not admit I’m on PrEP, it’s weird. It’s like there’s still a stigma attached to it, which is totally unfair.”
Some of the men disclosed that they encountered “PrEP-related judgment, stigma or rejection when trying to connect online with prospective sexual partners.” One participant said that he was able to “brush it off” because it was just one person. However, according to the researchers, another participant disclosed more than one experience of “stigma and rejection from friends, which prepared him for subsequent stigmatizing experiences from prospective sexual partners.” This participant made the following statement:
“I just sort of blew it off. I think after my two very early arguments with my best friend and one with a friend who broke the friendship I was prepared for any kind of cursedness, like ‘Oh, you’re on PrEP, I’m not going to sleep with you, because you’re clearly a slut’…and I’m like, ‘you don’t even understand what it’s about.’ That’s fine, whatever.”
PrEP and HIV-related stigma
The researchers found that participants’ use of PrEP caused them to think about, discuss and change or challenge taboos and internalized negative feelings they had toward people living with HIV.
One man said: “I grew up in a time where the notion of unprotected sex was not only stigmatized but people wouldn’t engage sexually with people that were HIV positive, even with condoms.” This man later disclosed that, given this history, his use of PrEP felt “empowering.”
Other participants stated that PrEP allowed them to have “more honest” sex with other men. As one man said: “I know that there is a lot of stigma toward positive guys but when I had sex [with them], I felt like most of the time it was better…. I built good relations, like I have many friends who are undetectable or positive…. I just felt like, you know, we were both honest.”
Well-designed studies have found that HIV-positive people who take treatment (ART) and whose viral load in the blood becomes very low (commonly called “undetectable”) and who maintain this low level of viral load do not pass on HIV during sex. Researchers noted that some men in the present study felt that relying on this form of protection depended on “the actions and adherence of another person.” Researchers said that the men felt that their use of PrEP “allowed them to be in control and do something for themselves to reduce their risk of HIV.”
The researchers found that participants felt that their use of PrEP “lessened feelings of stigma and rejection toward gay men who are HIV positive.”
One man said that he saw his use of PrEP as way of helping to reduce what he referred to as persistent “moral stigma” related to HIV.
Another participant stated: “It kind of made me feel good that I don’t have to ask guys what their status is, and so poz guys don’t have to worry about disclosure or rejection and, you know, all that stigma stuff. And I like the idea that they have a different experience now that there are so many guys on PrEP because some guys would just—like, I don’t ask.”
The researchers noted that more than one PrEP user decided to no longer ask about the HIV status of his potential sex partners. As a result, the researchers made this statement:
“We think it is important to reflect on the public health significance of some men on PrEP saying that they no longer discuss HIV status with sexual partners because of their PrEP use. While this reported change in behaviour may be intended as a form of social progress—aimed at destigmatizing HIV positivity—there may also be potential unintended consequences of this behaviour if it became more widespread. We feel that clinical counselors and PrEP educators should be mindful of this potential change in behaviour as PrEP rollout expands.” The researchers did not provide further details about their concerns.
PrEP and structural stigma
According to the researchers, participants spoke about how PrEP “sometimes exposed broader structural forms of stigma related to PrEP and gay sexuality.” Some of the men saw such stigma as “an insidious structural barrier to broader PrEP awareness and access.”
Related to this, the researchers stated that some men expressed discomfort discussing the following topics with their doctors:
- their need for PrEP
- gay sexuality
- risks related to getting HIV
This discomfort acted as a barrier to accessing PrEP.
The researchers asked participants for recommendations about policy issues regarding PrEP. Below are the themes raised by the men:
- There needs to be increased education in the community about PrEP.
- As PrEP is highly effective, it was seen as a cost-effective measure to help prevent HIV.
- PrEP was seen as giving gay men “equality of access to healthy sex that straight people already have.”
Bear in mind
Although participants reported some degree of negative attitudes and behaviours from some people in their social and sexual networks when they disclosed their use of PrEP, the researchers found that most of the men they interviewed “were reluctant” to assume the identity of a victim or to see PrEP in a negative way because of the stigma they encountered. The researchers noted that “not only were the men able to manage the negative issues associated with PrEP but that stigma rolled off their back.”
Social and societal issues
The researchers found that there was an apparent contradiction in the men’s stories about PrEP. On one hand, disclosing their use of PrEP caused them to experience “stigmatizing reactions within their social and sexual networks.” On the other hand, they described their use of PrEP as helping “to remove stigma, shame and fear related to HIV, sexuality and sex with gay men living with HIV.”
The researchers made the following statement: “We believe that it is essential that these narratives be read with reference to gay men’s political struggle and historical trauma, with an understanding of the evolving policies and discourses that coordinate and regulate gay men’s sexual and social lives. 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, although certainly not limited to, gay men.”
The researchers acknowledged that they interviewed a small group of well-educated white gay men, and so their findings are not likely to apply to other groups. They call for additional research with different communities “who are using or who may benefit from PrEP” to find out about their experiences.
Resources
Oral pre-exposure prophylaxis (PrEP) – CATIE fact sheet
Pre-exposure prophylaxis (PrEP) resources
Canadian guidelines for PrEP and PEP to help prevent HIV infection – CATIE News
—Sean R. Hosein
REFERENCES:
- Grace D, Jollimore J, MacPherson P, et al. The pre-exposure prophylaxis (PrEP)-stigma paradox: learning from Canada’s first wave of PrEP users. AIDS Patient Care and STDs. 2018 Jan;32(1):24–30.
- Cohen MS, Chen YQ, McCauley M, et al. Antiretroviral therapy for the prevention of HIV-1 transmission. New England Journal of Medicine. 2016; 375:830–9. Available from: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1600693
- Rodger AJ, Cambiano V, Bruun T, et al. Sexual activity without condoms and risk of HIV transmission in serodifferent couples when the HIV-positive partner is using suppressive antiretroviral therapy. Journal of the American Medical Association. 2016;316(2):171–81. Available from: http://jama.jamanetwork.com/article.aspx?articleid=2533066