Prevention in Focus

Spring 2016 

From the front lines: Gay men’s knowledge of new prevention strategies

We spoke to three service providers to find their views and approaches on the issues related to talking to gay men about new prevention strategies:

  • Brook Biggin, Community Education Facilitator, HIV Edmonton, Edmonton, Alberta
  • Phillip Banks, Executive Director, Peel HIV/AIDS Network (PHAN), Brampton, Ontario
  • Chris Aucoin, Gay Men’s Health Coordinator, AIDS Coalition of Nova Scotia, Halifax, Nova Scotia

Brook Biggin

Do the gay men you work with have varying levels of knowledge and awareness around new prevention strategies? Please explain. How do you tailor your messages to guys with different knowledge and awareness levels?

Of course! Yes, gay men have varying levels of knowledge around new prevention strategies. It’s like anything else. To give an example, I read Huffington Post every day, so I am pretty informed (and slightly biased) about numerous world events (ha-ha). But, I don’t have a clue who won the Oiler’s game last night. It’s the same with HIV prevention. Some guys are just naturally interested and so they’ve read up on PrEP and what it means to have an undetectable viral load. And some guys are reading up on something different or not reading at all, because that’s not their thing. It’s really about gauging where individuals or certain groups within the community are sitting in terms of their understanding and meeting them where they are.

I also don’t treat the members of my community as though the only thing they can process is a one-line statement on the efficacy of PrEP or treatment as prevention. In fact, when we leave them with that, we leave them with incomplete and inadequate information to make decisions regarding safer sex. Many of the guys we serve are pretty bright. I’ve stood across from guys at the bar over a beer breaking down the Partner Study. Recently I posted a 1,500 word post about PrEP on my Facebook in response to a CBC article. That post pulled together information from various studies looking at not only efficacy, but debunking myths about risk compensation and side effects. That’s a book as far as Facebook is concerned but a lot of guys want more than what they’re getting. Numerous local guys have engaged with that post! That’s some real education. Because of the post, they now have adequate information to determine just how comfortable they are with making x, y, z decision, instead of having them rely on these “low risk, but not no risk” statements that we as service providers so often like to throw out there. What the hell does that mean to me as a guy trying to navigate my sex life in a world where HIV is a reality?!

How have you or your organization integrated this new HIV prevention knowledge into your programming with gay men? How receptive are gay men to this information? Please explain.

You know, I’m not sure I have a great answer for you. Although I’m a poz gay guy who has been well-integrated into the community for years, I have only been working in the field for 11 months. When I started, these developments were already here! It’s not like I had a horse in the race already and all of a sudden PrEP came along and upended my central messaging of “condoms are the only way to protect yourself.” When I came into this role, PrEP and treatment as prevention were already here. We already knew that they were effective. I think that if someone feels otherwise, there is really a lack of education or personal bias. It comes down to that phrase, “you have a right to your own opinion but not to your own facts.” So, you can’t be providing sexual health education to gay men and not be including information regarding PrEP and treatment as prevention. Their effectiveness is fact.

But how we integrate this knowledge into programming is a product of how we frame our work. I’m here to see my community thrive. And from a sexual health standpoint, that means ensuring that the guys I serve, both poz and negative, can have fulfilling sex lives – to have the sex they want to have. And that looks different for different individuals. So, it’s really trying to understand a specific individual’s needs and helping him choose whatever prevention options work best for him. It’s really not about me shoving any sort of agenda down anyone’s throat.

Do you feel that we are now in a position to give definitive answers to gay men about the effectiveness of new prevention strategies or is there still need for more research? Please explain.

Yes. I don’t think there’s any doubt that PrEP and treatment as prevention are extremely effective. We saw this message in CATIE’s updated prevention statements! You stated that condoms, treatment as prevention and PrEP, when used as intended, all reduce the sexual transmission of HIV by 90% or more. And yes, we all know there are caveats. But I personally have no problem saying that someone with an undetectable viral load who is adhering to their medication will not transmit HIV. I also have no problem saying that a negative guy adhering to his daily PrEP regimen will not contract HIV. And shifting to a professional capacity those statements would only shift ever so slightly. The tensions come, however, with the fact that many people working in gay men’s health are working within AIDS service organizations that face the general population and exist within a larger world of HIV prevention. So, in the same way that the Resonance Project states that gay men tend to be earlier adopters of new information in regards to HIV prevention, I also feel that gay men who work in gay men’s health and understand the needs of their community – from those I’ve spoken to – are also more willing to take a bolder stance on new developments in prevention like PrEP and treatment as prevention. Messaging for the general population does not always work for the lives of gay men. We can be more definitive – this allows guys to have the sex they want, and for some, this means condomless sex.

What are the challenges to keeping up to date with the latest developments in new prevention strategies? Do you have any suggestions for others that are struggling?

I don’t have a particularly difficult time keeping up to date. That’s due to a few things. First, when I started this role, I probably spent a couple solid weeks perusing online databases looking for everything I could find on PrEP and treatment as prevention. I recognized how big of a game changer it was, that it was a discussion that was happening in other major centres, and that it was only a matter of time before it became central to the discussion here in Edmonton around the sexual health of queer men. In fact, the first presentation I developed at HIV Edmonton was a 75-minute presentation on developments in prevention technologies. So, having laid that foundation already, when something new comes along I can simply sort that into an existing pile of information.

That said, there is concern around capacity – my capacity and the capacity of my organization – to meet the needs of gay men and keep up. I am the only person at HIV Edmonton whose work focuses on gay, bisexual, and other men who have sex with men. There are about one million people in Edmonton. Yes, we are smaller than Vancouver, Toronto, and Montreal, but when you compare the number of workers and organizations engaged in gay men’s health in Edmonton to those larger centres, we’re not just screwed at a pure numbers level but even on a per-capita basis, by a large stretch. So, if I’m neck-deep for two weeks doing research on prevention technologies, as I was when I started here, then those are two weeks that I’m not doing something else, things that are also urgently needed. There’s no one to split the work with. So, you have to prioritize. And that often means focusing on one need and waiting to address another. It’s not ideal but it’s necessary.

This is why we as a national gay men’s health movement really need to look at addressing regional disparities, particularly around knowledge exchange. There are guys working in this field who can pull the numbers from seven or eight different studies related to PrEP and treatment as prevention off the top of their head – I know this because I know several of them, and I am one of them. But if those people exist, there’s no reason that one guy working in the middle of Saskatchewan or the Yukon or wherever should have to spend two weeks trying to pull information together at the expense of all of the other things they need to do in order to serve the community. We can do better than this. We need to do better than this!

Phillip Banks

Do the gay men you work with have varying levels of knowledge and awareness around new prevention strategies? Please explain. How do you tailor your messages to guys with different knowledge and awareness levels?

Yes, but first I think that a little context about where I work is important. Peel HIV/AIDS Network is based in the large Region of Peel in southern Ontario, where we serve multiple municipalities (Mississauga, Brampton, and Caledon) with almost no LGBTQ services. PHAN has one staff position devoted to gay, bi and other men who have sex with men for the entire region. That leads to a lot of work – there are 1.4 million residents in our region – with few resources.

Given the lack of services and community spaces for gay men in our region, most gay and bi men who are connecting are doing so online. This is primarily where we connect with them too.

So, having said this, yes, there is no question that the men we work with have varying levels of knowledge. From awareness of HIV in general to awareness of prevention strategies, there is definitely a broad spectrum of knowledge. I think that lots of guys are talking about sero-sorting and sero-positioning in online hook-up forums, but for newer prevention strategies, like PrEP and treatment as prevention, there is far less awareness. That said, we have the sense that knowledge is building.

When we do online outreach on hook-up sites, if we get questions about newer prevention strategies, they tend to be about what some men see in other guys’ profiles about new prevention strategies. Men ask us things like “what does ‘on PrEP’ mean?” or “what does ‘undetectable’ mean?” because some guys who are more ‘in the know’ post this stuff in their profiles. So the language is getting out there, but the concrete knowledge is not as up-to-date. Generally, and obviously there are exceptions to this, the poz guys seem to have much higher levels of awareness of newer prevention strategies than the guys who are negative.

But honestly, questions about PrEP and treatment as prevention or viral load are not the most common questions that we receive in our online outreach. Most of our conversations with guys online are more basic – how HIV is transmitted, where to get tested, that kind of stuff. We are not typically engaging in highly sophisticated conversations about PrEP or other new prevention approaches. For example, people may ask what PrEP is, but we rarely are asked where to find it or the evidence behind it. Men just aren’t there yet in our region.

So, we respond with appropriate messages, depending on the questions being posed. We rely on other groups – like the Ontario Gay Men’s Sexual Health Network (GMSH), which develops messaging and campaigns for gay men that we help circulate in our region, and CATIE – to help link people to other sources to learn more about new HIV prevention strategies. We don’t have nuanced messaging.

How have you or your organization integrated this new HIV prevention knowledge into your programming with gay men? How receptive are gay men to this information? Please explain.

PHAN has worked hard to get new prevention strategies integrated into our work, but this is relatively new. Perhaps like other organizations, we have spent a lot of time laying the groundwork for integration, and not yet the active integration of the knowledge into programming itself.

Within the past six months, we have worked to get a position from our Board on treatment as prevention/viral load and transmission, and PrEP. For us, there were a lot of mixed feelings about our organization taking a position on these things, as it was not clear to us if there was no risk of transmission with these new strategies. The Board, for example, had to ask some hard questions about risks to the organization (like liability) of putting out messaging on new prevention strategies in the face of uncertainty around the science.

We have also had to work through things related to values in the face of new prevention strategies like PrEP or treatment as prevention. For example, some people who have been in the movement for a long time have struggled a little bit with concerns that embracing new strategies means giving up condoms. But I think that more recently, at an operational level, we have been able to embrace the more definitive scientific position on treatment as prevention and PrEP. We still want a strong endorsement of the board but I understand that this takes time. An endorsement from the Board on new strategies will also help to create more confidence among staff who have also struggled with this shift to new approaches. We also invited a consultant to provide an information session on new strategies, the evidence behind them, and what they might mean for our work. This also seemed to help.

For our organization, we have had to address important questions about new strategies, such as “are they just for gay men?” and “will these really benefit positive people?” These are important questions to ask and conversations to have, and they take time. We are currently focusing on this.

So, have we integrated this new HIV prevention knowledge into our programming with gay men (or anyone else), the answer is, “not quite,” but we are really close. We are close to being as comfortable as we can be, collectively and individually, with these strategies to start putting out messaging and working with others, like physicians, to help get the word out about them. We have been talking with public health about partnering to develop CME-accredited training for physicians about PrEP.

It is also important to point out that, for our organization working in this region, this is not just relevant for gay men. It is important to think about how to integrate this knowledge into all of our work.

Do you feel that we are now in a position to give definitive answers to gay men about the effectiveness of new prevention strategies or is there still need for more research? Please explain.

Oh yes, absolutely. I feel like now, even more than a year ago, we have such a strong sense of confidence as a result of having more study findings and acceptance in the scientific community. This really helps. Its seems that we in the community who want to move forward with new approaches are no longer at odds with the positions of funding agencies, for example. We are all on the same page it seems. There is a more unified position, even within the activist community. Poz and neg people in the gay men’s activist community seem to be on the same page. There has been a groundswell that has helped organizations like mine know that there are reliable sources to go to for this information. And that organizations like CATIE finally take a position, well that’s huge. Many organizations and individuals that have been on the fence before or non-committal are changing. So yes, we are in a position to give definitive answers.

As a movement, I worry that our funded public health movement, the HIV sector, will be looked back upon as having dragged our feet. For PHAN, we are challenged to dedicate specific resources to focusing on new prevention approaches to reach gay and bi men in our region, say, to create something focused in terms of content and directed in terms of audience. Our audience is so broad (and as I already mentioned, gay men are not our only priority population). But collectively, we are taking time to respond to this and yes, it is important to be cautious, but we know now that we can give definitive answers; we are far behind and we have a lot of catching up to do. Organizations like Health Initiative for Men have really taken the lead on rallying organizations across the country on some advocacy around preventions strategies, like getting Gilead to put in their application to Health Canada to approve Truvada for PrEP, but because PrEP was seen as most relevant to gay men only, organizations that serve a really diverse audience, or don’t have gay men as their only priority population, didn’t necessarily recognize how important these new strategies have been for them as well. It has taken organizations that have a solid focus on gay men to move this forward; they have just brought the rest of us along.

As a sector, we are challenged to move forward on things that we don’t see as applicable to all of the populations that we serve. Sometimes these new strategies are just seen as for gay men. But we have to come together to make this available to all. It will remain inequitable unless we come together to advocate for all the populations that we serve.

What are the challenges to keeping up to date with the latest developments in new prevention strategies? Do you have any suggestions for others that are struggling?

There have been so many ways to keep up to date. The GMSH is important in this for Ontario gay men’s organizations or programs. It has had various presentations at their symposia on new prevention strategies. Opening Doors had a presentation on PrEP too, and there was a café scientifique event on new strategies before the CATIE Forum. People who speak at these events tend to be known and trusted. I encourage staff to attend and I attend as well.

Some of us also personally and professionally follow these conversations. We also go to various websites for information. There are discussions in social media, discussions with people on PrEP, critical examinations of treatment as prevention, and other discussions; there has been an explosion of conversation on this. We actively seek out this information from places like CATIE and

Chris Aucoin

Do the gay men you work with have varying levels of knowledge and awareness around new prevention strategies? Please explain. How do you tailor your messages to guys with different knowledge and awareness levels?

Oh, absolutely. The guys that we work with have a wide range re how much knowledge they have about new prevention strategies. We make sure that we address differing levels of knowledge by offering different levels of detail about these prevention strategies. Our goal is to make this information as accessible as possible to as many people as possible, so we do [online and in-person education and information dissemination] through a “pyramid approach.” What this means is that the actual way that we organize and deliver this information is layered and conscious. For example, in our Check Me Out sexual health check list, which is a campaign for gay and bi men, we focused on a lot of information that the Resonance Project article is talking about. However, we organized the information in a way that men can first access the ‘core message’ that we are trying to put out about HIV or STI prevention, and leave it at that. But for men who want to go further and deeper into the information, they can keep digging and uncovering more and more layers of information, meaning more and more nuance. They can choose to walk away at any point, but the core message (or more!) has been delivered. We structured the information to allow people to get more and more detail about the topic of sexual health if they have the interest and capacity, but we don’t require this of them to get the core message out. For example, if a guy wants to know why we say some prevention approach is effective, they can easily dig a little deeper and find it. We don’t just offer simple one-liners any more. We have to make it straightforward, but allow some guys to access the more complex information if they want to.

How have you or your organization integrated this new HIV prevention knowledge into your programming with gay men? How receptive are gay men to this information? Please explain.

As much as possible, I try to integrate this new knowledge into all aspects of my programming with gay men. I have to be on top of new HIV prevention knowledge and be prepared to answer questions about new prevention strategies at any moment. For example, PrEP is now becoming the new hot topic of conversation in general, and this definitely comes up when I do online outreach. I have had to upgrade my knowledge on PrEP effectiveness, and on the infrastructure around, and barriers to, PrEP access in Nova Scotia. I have to understand the obstacles guys face in accessing PrEP and how to overcome them. Sometimes, “integrating” this knowledge into my work is as simple as realizing there is an information need – when a guy asks me a question – not knowing the answer, and then going to find that answer. With PrEP, I had to dig around and find out the answers guys wanted – if it works, where to access it, that sort of thing. While I want to be leading the conversation, in online outreach, I am often replying to questions men have about what they are hearing about new prevention approaches “out there,” so you need to be prepared.

While I try to integrate knowledge of new prevention strategies into all of my work, I need to see the evidence. Service providers have to make a judgment call about when they start talking about particular prevention strategies – and it is important that this happens when there is enough evidence behind an approach. For me, I always look to see how many studies have been published on a certain approach (and what kinds), as well as if other organizations are talking about it. PrEP is a great example – there is research evidence behind it and organizations like CATIE and others are talking about it a lot. Within the past 12 to 18 months, the information on PrEP has really been getting out there. So, while there is not the infrastructure to access PrEP in Nova Scotia yet, as service providers, we need to be on top of this information.

In term of receptivity, because we are often replying to questions from guys (as opposed to leading the conversation), yes, generally men are receptive to the information. There certainly is a spectrum of receptivity, just as there is with level of knowledge. I find that often the least receptive guys are the older gay guys who have lived through the epidemic and who might feel that they know all that they need to know – they stopped listening to “new” prevention information 20 years ago. But, as a service provider, I need to be ready to respond to any individual, whether they approach me for answers or if I am trying to provide updated knowledge. This takes energy and time. It is a very nuanced and organic process. We really have to listen to know what men are asking for.

Do you feel that we are now in a position to give definitive answers to gay men about the effectiveness of new prevention strategies or is there still need for more research? Please explain.

To a degree. We don’t want to pass on information that is not very reliable, which would have huge implications both for our reputation as service providers and for that person’s risk. This is about making sure there is enough research evidence behind a particular approach. As service providers, we need to be gatekeepers to this information in a way, and be able to qualify the information with any caveats that exist – the evidence behind new prevention strategies like PrEP and undetectable viral load is not always completely straightforward, and we need to be able to explain the nuance of the effectiveness of these new strategies. For example, some guys ask me about undetectability, viral load, and transmission. The nuance that “undetectable” is not a badge that you wear forever, that it is variable and that it doesn’t always equal zero risk often does not come up in conversations unless I raise it. It is my role to help guys that want more information understand this – such as that STIs or the flu can interfere with this designation of “undetectability” and the implications of this designation.

Is more research needed on PrEP and undetectable viral load? Yes, I think there is. For example, it would be great to learn more about different dosing strategies for PrEP. I am always keen to see more nuanced research on these new strategies. Population-specific research is very helpful. 

What are the challenges to keeping up to date with the latest developments in new prevention strategies? Do you have any suggestions for others that are struggling?

This is definitely an ongoing challenge. There has been so much research that has come out in the past 10 years that has changed the prevention landscape; it is challenging as the front-line program designer and provider to keep up with it. It definitely takes a certain amount of health and research literacy to be able to find this information, absorb it, and figure out how to incorporate it into the work. This is one of the biggest challenges, I think – having the capacity in our community-based organizations to read original research or understand the implications of a fact sheet from CATIE. While some people, like me, like to go directly to the research, not everyone has the capacity to or interest in doing this, or time. But even for people who do have the capacity to go to the original research, it is important to use organizations like CATIE to access clear and reliable information. It is also helpful to look to see what other providers are doing and learn from how they are approaching things. These are the three strategies I use to stay on top of things. 

It takes time to do these three things, however! I work for a small, under-resourced AIDS service organization and my position is only funded part-time. Usually, my plate is pretty full. To keep up with the latest knowledge of HIV prevention takes time and this is often not a funded activity – my time is supposed to be spent on programs. Having time to just search for and read research summaries is limited. I have come to rely more and more on CATIE’s various fact sheets and publications to get easy access to this knowledge.

If we are going to do evidence-based work, which we need to do, it is critical that we have access to the most relevant and up-to-date information. Organizations like CATIE are critical in filling that need. Also important is having opportunities to share knowledge between and among frontline gay men’s health service providers.

Related article

For more information on the Resonance Project, see The Resonance Project: What service providers are saying about biomedical information on HIV prevention.