Prevention in Focus

Fall 2016 

The Resonance Project: What gay men are saying about biomedical information on HIV prevention

By San Patten

In the last issue of Prevention in Focus, we introduced the Resonance Project and reviewed the findings about service providers’ knowledge of the role that antiretroviral drugs can play in HIV prevention among gay men.

This article looks at some key findings about the knowledge that gay men and other men who have sex with men have about two new prevention approaches – pre-exposure prophylaxis (PrEP), and the use of antiretroviral treatment (ART) to reduce the viral load to undetectable levels.

What is the Resonance Project?

The Resonance Project: Emerging Biomedical Discourses and Decisions within Gay Men’s Knowledge Networks is a community-based research project led by four researchers, with representatives from four national HIV organizations and three gay men’s health organizations.

We conducted four types of focus groups with gay men in Vancouver, Toronto and Montreal:

  1. 29 gay men connected to HIV organizations
  2. 13 gay men in serodiscordant relationships (where one partner is HIV positive and the other is HIV negative)
  3. 18 sexually active HIV-positive gay men
  4. 26 HIV-negative gay men at “high risk” for HIV.

We used discussion prompts that included mock dating/hook-up profiles, dating scenarios and article headlines to get participants talking about biomedical concepts and how they come into play in their own lives without making them feel like their knowledge levels were being tested. There were follow-up interviews with a subset of four gay men.

We also conducted focus groups and interviews with 38 service providers, and described the findings in the previous issue of Prevention in Focus.

Focus groups and interviews were conducted over the winter of 2013-2014 and represent gay men’s perceptions at that point in time. Discussions of PrEP and ART and undetectable viral load to prevent HIV transmission have developed rapidly in the gay community, the media and the HIV sector since then. A new series of focus groups and interviews may show an evolution in how these issues are now resonating with gay men and how service providers are responding to the challenges.

The Resonance Project generated findings on several dozen themes and subthemes. Below we briefly describe the findings on PrEP, undetectable viral load, and grappling with new HIV prevention information.

Results

What did gay men say about PrEP?

PrEP awareness and concerns

Even though we didn't measure how much participants knew about PrEP, we did observe significant differences in knowledge levels. Some guys had never heard of PrEP, while others were already using it. Being HIV positive, knowingly interacting with positive guys, or being connected to HIV organizations seemed to increase knowledge and confidence levels in PrEP. HIV-negative participants without these connections tended to have lower levels of knowledge and confidence than others.

Gay men in our focus groups expressed concerns about a range of issues, including cost of PrEP in the absence of health insurance coverage, PrEP not preventing sexually transmitted infections other than HIV, potential side effects of PrEP, and the ethics of providing ART to people who are HIV-negative.

"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." [HIV negative, age 35-49, serodiscordant relationship]

PrEP users are responsible/sluts

When participants expressed judgments about PrEP users, these judgments seemed rooted in how the men experienced the HIV crisis and what their experiences were around ART and condoms. They debated whether PrEP users are sluts, responsible guys, or both at the same time – responsible sluts. Some of the participants who are HIV positive understood the benefits of PrEP and could, in retrospect, see how it would have been beneficial in their own situations. Other HIV-positive men did not understand why someone would want to take pills unnecessarily. Some of the older men who had developed strong personal commitment to condom use felt that PrEP was an excuse to be ‘irresponsible’, in other words, to have condomless sex.

"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." [HIV positive, age <35, serodiscordant relationship]

"It means that they want the possibility of unprotected sex, a bit like me. S-L-U-T." [HIV positive, age 50+, serodiscordant relationship]

"We’re pill takers because we like to fuck… Well maybe you’re better off not taking medication and respecting your sexual health." [HIV positive, age <35]

Calculating risk with PrEP

For some gay men – both HIV positive and HIV negative – PrEP provided sufficient reassurance to have condomless sex, while others remained 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 [by not wearing a condom]… This makes no sense to me." [HIV negative, age <35, at “high risk”]

"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." [HIV positive, age 50+]

"I know he’s negative and on PrEP and tested every three months. That’s like everything a bottom could wish for." [HIV negative, age <35, connected to HIV organization]

PrEP and the sex gay men desire

Participants questioned PrEP’s role in the type of sex gay men want. Two conflicting ideas circulated through the narratives of gay men in all the focus groups. For some participants, PrEP could provide a false sense of security in the pursuit of condomless sex, and is helping to precipitate it. For others, PrEP is introduced into a context where gay men are already pursuing the type of sex they desire (by which they mean condomless sex), allowing them to do so with lowered risk of HIV. These two ideas were expressed by gay men with a variety of experiences, HIV statuses and backgrounds. The differences in perceptions did not appear to be divided by HIV status, but by personal attitudes towards condomless sex. Especially for men who find condoms an impediment to sexual satisfaction, PrEP promised enhanced sexual pleasure.

"PrEP I mean that’s… like I respect the guy… he’s doing what he can while still enjoying sex because 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." [HIV positive, age 35-49, serodiscordant relationship]

What did gay men say about undetectable viral load?

Undetectable viral load awareness and concerns

As with PrEP, we did not measure gay men’s level of awareness about undetectable viral load or their level of confidence in its ability to reduce the risk of HIV transmission. But we did see that levels of awareness and confidence were highest among those who were living with HIV, knowingly interacting with positive guys, or connected to HIV organizations. They noted that undetectability was an exciting new concept for HIV prevention, but what that means isn’t equally understand by all members of the gay community.

"Until I moved here I was still operating on the data from 20 years ago when raw was forbidden, period. I had to go do a lot of research before I could convince myself that it was an OK thing to do...I went to the web and looked up everything I could and spoke to some health professionals...They all said the same thing; having sex with somebody that is known to have low viral load is safer than having sex with a stranger with a condom. I couldn’t believe that they were all saying the same thing. Wow! So I started having unprotected sex with him [poz partner]. I’m always the top. That’s the stipulation." [HIV negative, age 35-49, serodiscordant relationship]

"The word undetectable, I agree with you, it trivializes the risk of transmission, enormously." [HIV positive, age <35, connected to HIV organization]

"Undetectable, a lot of people think ‘oh I’m never going to get infected’ or ‘I’m never going to infect anybody else.’ So therefore, get rid of the condoms now... But there’s still that less than 0.05% that you can." [HIV positive, age 50+]

Undetectability and risk calculation

Across all four focus group types, there were two opposing views expressed by gay men regarding the concept of undetectability. For some gay men, an undetectable viral load provided sufficient reassurance to have condomless sex, while for others it did not. Many gay men emphasized that while it might lower the risk, some risk remains. And some gay men wondered: Can I know that a sexual partner really is undetectable? Some men living with HIV felt liberated by an undetectable viral load, while others remained steadfastly committed to condom use. Some HIV-negative men understood well the concept of undetectable viral load and felt comfortable with condomless sex, while others were not comfortable or willing to rely on undetectability as an HIV risk reduction strategy.

"You also can’t lose sight of the fact that it’s a crapshoot. You might get away with it once. You might get away with it twice but then one day you might wake up and get that phone call." [HIV positive, age 35-49, connected to HIV organization]

"I don’t know. If you’ve been with somebody for 5 years and you’ve barebacked the whole time, and they’re still negative, that raises a lot of questions." [HIV positive, age 35-49, connected to HIV organization]

Undetectable as “the new negative”

Many HIV-positive men talked about the idea of undetectability as an identity (as opposed to ‘poz’ or ‘positive’) as a way to signify that they are healthy and pose a lower risk of transmission. They felt this helped reduce stigma. But both HIV-positive and HIV-negative participants questioned the impact of identifying as undetectable in a context where the concept is not well understood in the community.

"A lot of negative guys are seeking out undetectable positive partners… Saying undetectable is the same as negative, I think it’s actually better, because a negative person’s status is only as good as their last test." [HIV positive, age 50+, connected to HIV organization]

"I wear my undetectability like a badge of honour. I’m very proud to be undetectable." [HIV positive, age 50+]

"Just to say undetectable, most people who are positive they know what that means and they know that they are in a healthy phase, in a healthier phase." [HIV negative, age <35, connected to HIV organization]

"In the Village everyone knows what it means to be undetectable. In outlying regions when I say that I’m poz undetectable, I get three question marks." [HIV positive, age 50+, connected to HIV organization]

How were gay men grappling with new and evolving HIV prevention information?

Frustration with and distrust of inconsistent information

Many gay men across all four focus group types noted the inconsistency of information around HIV prevention in the public domain (for example, social media, mainstream media, HIV organizations’ messages, gay media, public health messages, hook-up apps or websites). They described the information as overwhelming, sensationalist, inaccessible, and/or contradictory. As a result, some gay men felt that they might as well just wait for the confusion around new biomedical prevention options to pass, and actively avoided any new information related to HIV prevention as they found it unhelpful.

In discussion of treatment-based prevention strategies, several gay men across the four focus group types expressed considerable distrust of the pharmaceutical industry and of the biomedical research establishment. They made reference to conspiracy theories linked to profit motives of the pharmaceutical industry. Despite the skepticism expressed by many gay men, some of them identified trusted sources, which were typically healthcare professionals or people working in the HIV field.

"As far as media goes, they are the worst to read for scientific information. They manipulate it. They twist it. They throw their own curve to it." [HIV negative, age 50+, at “high risk”]

"There are so many mixed messages. I mean one day there’s a pill that prevents HIV and then the next headline says that it failed… They say that with coffee as well; one day caffeine is great for you and it extends your life and then the next day if you’re drinking two cups a day it’s shortening your life and it’s going to give you heart disease." [HIV positive, age 50+, serodiscordant relationship]

"It would take a nurse or doctor to tell me you don’t actually need to worry, you’re at super, super super low risk. My friends had told me that. But it took a nurse and doctor to tell me that before I actually realized that: ‘oh OK I was at super low risk and I’m fine’." [HIV negative, age <35, connected to HIV organization]

Feeling like information is withheld

Some gay men, especially those connected to the HIV sector and those in serodiscordant relationships, expressed frustration at the lack of evolution in HIV prevention messages, with its persistent emphasis on condom use. They acknowledged that messages around condom use are simpler, but felt that information about risk-reduction strategies other than condoms was being withheld from them, considered taboo, or forbidden by public health.

"There has been information about it going around for a few years now and at first I was skeptical and wondering ‘Is that a lie? You can’t find anything written about it almost anywhere else. Is this information boycotted? Is it censored? ’ It came from Switzerland. They were saying that ‘for people who have an undetectable viral load and take their meds regularly, the risk of transmission is almost nil. ’ Well, this information was well-kept. We were wondering how can we even know if it’s true? No one is passing it on. Where is this coming from? Is this reliable?" [HIV negative, 35-49, at “high risk”]

"I’m sure that public health educators are tearing their hair out because this complicates messages. It’s better when it’s more simple and if you can instil fear in people and tell them ‘don’t have condomless sex, it’s death’." [HIV negative, age <35, at “high risk”]

Synthesizing a personal strategy

Even when facing a vast and complex array of information sources and opinions, many gay men across the four types of focus groups described making their own autonomous decisions after reviewing information that they can understand and that they deem credible. Some of the HIV-negative high-risk men stated that they refuse to pay attention to new information, relying instead on what they already know.

"When you read ‘the US FDA approves HIV prevention pill’ I’m like how could I have been in such a news bubble that I didn’t read something about this? I’m now intrigued and I want to take time and be like well let’s find out when this happened, what happened with this. But in the meantime – condoms. By default it’s what’s worked for me so far. Hopefully it’ll always keep working." [HIV negative, age <35, at “high risk”]

"I honestly hadn’t heard that much of what we’ve been discussing. I feel like anything I say is uninformed. There’s so much information out there and a lot of it is conflicting. But some people don’t know how to sort out what’s relevant or not. So we kind of just stick to just always wear a condom or don’t have sex ever." [HIV negative, age 35-49, at “high risk”]

What are the implications for service providers?

Help gay men navigate information

Gay men are sifting through a considerable amount of complex information about HIV prevention. They are devising their own personal strategies for how to integrate the information into their sex lives based on decisions about what information and whom they can trust, and on their own values and experiences with HIV. As noted in our article from the perspective of service providers, community discourse is building around biomedical prevention, sometimes without adequate input or guidance from service providers. These are the very service providers who are most trusted when it comes to HIV prevention information. An important role for service providers is to communicate in clear, sex-positive and user-friendly ways the key messages of what we now know works for HIV risk reduction.

Support and nurture leaders in the gay community

Some gay men are acting as peer educators, albeit sometimes reluctantly. In general, we found through our focus groups with gay men in Toronto, Montreal and Vancouver that those who had connections to the HIV sector, who were in serodiscordant relationships, and/or were living with HIV were the most knowledgeable about PrEP and undetectable viral load. PrEP users and gay men who have an undetectable viral load are often acting as key opinion leaders, shifting the conversation, one hook-up profile or chat conversation at a time. As service providers, we can support key opinion leaders and (sometimes reluctant) peer educators by getting easily accessible information into the very (virtual or physical) venues in which gay men are meeting and interacting.

Don’t forget about the bigger picture

Too often, prevention approaches such as PrEP and undetectability are framed as biomedical tools without recognizing their broader implications. Biomedical prevention strategies such as PrEP and undetectable viral load are having some important benefits in terms of reducing HIV-related fear and stigma, breaking down serodivides (the divisions between people who are HIV negative and HIV positive), allowing HIV-positive men and serodiscordant couples to have the kind of sex they desire, and generating renewed conversations around HIV prevention in gay communities.

Resources

Pre-exposure prophylaxis (PrEP) – CATIE fact sheet

CATIE statement on the use of pre-exposure prophylaxis (PrEP) to prevent the sexual transmission of HIV

Pre-exposure prophylaxis (PrEP) resources

HIV viral load, HIV treatment and sexual HIV transmission – CATIE fact sheet

CATIE statement on the use of antiretroviral treatment (ART) and an undetectable viral load to prevent the sexual transmission of HIV

About the author(s)

San Patten, the Resonance Project Coordinator, is a consultant based in Halifax who specializes in HIV policy, community-based research, facilitation, and program evaluation. San completed a master’s degree in Community Health Sciences at the University of Calgary, teaches part-time at Mount Allison University and the University of Alberta, and is a co-investigator of the Centre for HIV Prevention Social Research at the University of Toronto.