The Resonance Project

What we heard from gay men and their service providers about: PrEP 

What we heard from gay men and their service providers about:

Even though we didn’t measure knowledge levels among participants, we nevertheless observed significant differences in knowledge levels about PrEP. Some men had never heard about it, while others were already taking PrEP.

Participants expressed concerns about a range of issues, including cost, efficacy, side effects and ethics. They also expressed a range of judgments about PrEP and those who use PrEP. Some of the judgments we heard were rooted in how the men experienced the HIV crisis and their experiences around antiretroviral drugs (ARVs) and condoms. Some of the participants vacillated between thinking about PrEP users (including themselves) as reckless sluts, while others described them as well informed and responsible. Sometimes PrEP users were described as both at the same time: responsible sluts.

There were also discussions about the impact of PrEP on the kinds of sex that gay men desired, and the liberating potential of PrEP in allowing for condomless sex with reduced anxiety.

Service providers described the struggles they faced when trying to integrate PrEP into their work.

PrEP awareness and concerns

Service providers appeared to be overwhelmingly supportive of PrEP and interested in promoting its use. While they described overall awareness among gay men as low, they noted that interest tended to be high among those who are PrEP-aware. According to service providers, awareness tended to be limited to a certain subset of well- informed gay men, who tended to be in serodiscordant relationships, connected to the HIV sector, and/or of higher socio-economic status.

PrEP, yeah I’m still not hearing a lot of buzz about PrEP. People who are super informed read all the stuff on Positive Lite and The Body and get all the blog feeds and stuff. But that’s a pretty small number. SP, 35-49, CBO, TO

So it’s like very affluent and also well-informed people who have access and can advocate for themselves with doctors. SP, 35-49, CBO, TO

Indeed in our focus groups, many of the gay men had never heard  of PrEP, or knew very little about it. As a result, confusion between PEP and PrEP was fairly common. Experience with ARVs—either as a positive person, being in a relationship with a positive person, or being linked to an HIV organization—seemed to have an impact on awareness and views about PrEP. Ironically, among the four types of focus groups, those who were least aware of PrEP were those who would most benefit from it – the HIV-negative men at high risk.

In the quotes below, we can see the range in levels of awareness about PrEP – from an HIV-negative participant in Vancouver who had barely heard of PrEP before coming to the discussion group, to a positive guy in Toronto who could explain PrEP to his peers in simple terms.

I honestly had no… like I knew about there being some sort of drug but I wasn’t too much aware of it to be honest with you. Neg, <35, VAN4

If you take one pill a day, the same thing as HIV medication, there’s a good chance that if you are engaging in unsafe activity, that you will remain negative by taking these medications. So that’s what PrEP is. Pos, 35-49, TO1

Participants raised several concerns over accessibility, efficacy, side effects, and the ethics of PrEP.

I’d be taking on a lot of risk by taking the drugs. Once it’s been out maybe 10 years, I might consider it then when all the effects are known. But right now it’s just too new. I don’t want to be one of the guinea pigs. Neg, 35-49, VAN2

If you’re using condoms I think PrEP would be ridiculous to use. I think condoms are way safe enough to stop transmission and PrEP would be just overkill. Why would you put your liver through that much toxicity over the years, chemicals, if you’re using condoms? Pos, 35-49, VAN3

Community discourse is building

Service providers in all three cities noted that community discourse around PrEP was building among gay men. Service providers reported that gay men were hearing about PrEP through social networks, online sexual and social networking sites, gay media, or through service providers. As community dialogue was building around PrEP, service providers felt the need to proactively participate in the discourse.

I think a main source of information is other guys…it’s a very mobile population. When they travel to the States for example where PrEP has much more of a high profile than it does in Canada, they hear about it. Online apps like Grindr, Scruff and all the rest of it are opportunities for people to have conversations. It’s through these communities, networks. SP, 35-49, RES, TO

We can’t ignore the fact that PrEP is now a topic in the community…The longer we wait to let people know about PrEP and educate people about PrEP, the more challenge we’ll have. SP, <35, CBO, TO

PrEP and risk calculation

For some gay men—both positive and negative—PrEP provides sufficient reassurance to have condomless sex, while others remain committed to condom use regardless of PrEP’s effectiveness. The participants also wondered: Are guys on PrEP safer sexual partners than others? Can I trust that a sexual partner is really on PrEP?

A miracle pill not to protect yourself, exposing yourself to risk of infection… This makes no sense to me. Neg, <35, MTL4

But nobody is saying 100%. So I’m very suspicious of all this stuff. Neg, 50+, VAN1

I thought about it briefly and decided it wasn’t really for me and didn’t consider it anymore because with [my positive partner] I already feel safe enough and with anybody other than him I’m using a condom anyway. Neg, 35-49, VAN2

I’ve heard about people taking it. But I personally never encountered one that I would have sex with. I would feel more comfortable but I would still push for the person to use the condom as well. Pos, 50+, TO3

PrEP and the sex we desire

Participants questioned PrEP’s role in the type of sex gay men want. Two conflicting tropes circulated through the narratives of gay men in all the focus groups. For some participants, PrEP is introduced into a context where gay men are already pursuing the type of sex they desire, allowing them to do so with lowered risk of HIV. For others PrEP provides a false sense of security in the pursuit of condomless sex, and is helping to precipitate it. Is PrEP a licenseb to throw caution to the wind or is it a sign of the good gay citizen calculating risk and responding rationally and methodically to the threat of HIV infection? Especially for men who find condoms an impediment to sexual satisfaction, PrEP promises enhanced sexual pleasure. Below is a quote from a positive guy in Toronto and from a Vancouver service provider:

PrEP I mean that’s… like I respect the guy… he’s doing what he can while still enjoying sex cause a lot of guys, they don’t enjoy sex when there’s condoms involved. That’s just a reality right. they’ll lose their hard on. they just don’t enjoy it. We’re only here for a short time. [laughter] We’ve got to have some fun in that time somewhere along the line. Pos, 35-49, TO2

I think there’s an entire culture of bareback…people who are participating regularly in barebacking and unapologetically doing that. They’re saying ‘well, I’ve used condoms for 20 years and I’m exhausted. I’m tired of it and now I’m taking back my liberty’ and they’re using PrEP as a point of pride. SP, 35-49, PSYC, VAN

PrEP users: responsible/sluts

Participants alternatively describe PrEP users as sluts and barebackers who think they are invincible on the one hand, and as responsible, thoughtful and knowledgeable individuals who take care of their health on the other. Sometimes they described them as both—responsible sluts. When participants talk about PrEP users as sluts, they sometimes refer to other guys, but they are also sometimes talking about themselves—either as current PrEP users in a couple of cases, or while imagining themselves as potential PrEP users. It often has a mix of judgement and irony, targeted both to others and to themselves.

If PrEP is available to anyone who wants to take it, does that mean you’ve got a bunch of guys who think they’re totally invincible and they’re going to go fuck their brains out? …I wish that we had PrEP for my personal situation. Pos, <35, VAN2

It means that they want the possibility of unprotected sex, a bit like me. S-L-U-T. Pos, 50+, VAN2

We’re pill takers because we like to fuck… Well maybe you’re better off not taking medication and respecting your sexual health. Pos, <35, MTL3

I know he’s negative and on PrEP and tested every three months. That’s like everything a bottom could wish for. Neg, <35, VAN1

PrEP judgment and stigma

Service providers observe high levels of judgement, slut-shaming and stigma towards those who might choose to use PrEP. Some attributed this judgment to the strong dogma of condom use that has been reinforced since the early days of the HIV epidemic.

All those criticisms are the exact same thing that was said when the birth control came on the market. When the pill came out it was like oh my God, you’re all a bunch of sluts; it just means you’re going to be sluttier. That’s sort of the same thing. SP, 35-49, PH, VAN

PEP is ‘oops I made a mistake’ but then PrEP is ‘I am planning to be bad.’ SP, <35, PSYC, VAN

Lack of consensus and guidance

Service providers themselves are struggling to know what to say about PrEP in the absence of consensus and guidance.

There’s no standard…it’s not like there’s a health unit out there or Health Canada saying this is their guideline. It’s still kind of a Wild Wild West. SP, <35, PH, TO

People who work in the field are fighting amongst each other, squabbling about what percent effectiveness we can really take home from these trials. gay guys are witnessing these types of disagreements…and from the standpoint of the average gay guy that’s just not good enough. We need to be doing a better job of creating some kind of consensus. SP, <35, PYSC, VAN

Patten S, LeBlanc MA, Jackson E, Adam B (2016). The Resonance Project Community Report: Emerging biomedical discourses on HIV among gay men and their service providers.