Fear-based AIDS messages backfire, says prof

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Bill Ryan is part-activist, part-author, part-academic. He has worked on issues related to gay rights, sex education and HIV prevention in Canada since 1985.

Ryan is also a leading figure in a growing national movement to overhaul how we look at gay men’s health. Recently I had an opportunity to ask Bill about where we’ve been and where we’re headed.

Nicholas Little: For some years now you’ve been engaged in the gay men’s health and wellness movement, which aims to reinvigorate HIV prevention for gay men. But why would it need reinvigorating in the first place?

Bill Ryan: For several reasons. First of all, gay men today experience their lives and HIV in very different ways than at the beginning of the epidemic. The tremendous leaps we have made in human rights laws, and a vastly different social environment in which to come out for youth, make up one set of reasons.

Another set concerns treatment options for HIV, which are totally different than 25 or 20 or even 10 years ago. When I founded a support group for people with AIDS in 1986, we were basically seeing people at end-stage and their life expectancy was short. We had just learned that HIV was the cause of AIDS but didn’t know how it was transmitted — we thought maybe even kissing was dangerous! In 1992 if you went to the village in Montreal you would see dozens of men in various stages of dying, basically. Treatment options, thankfully, have changed the landscape in ways we could never have imagined, but this has also rendered prevention efforts much more complicated for us.

In February, Swiss scientists announced that it is basically impossible to transmit HIV when your viral load is undetectable. That is amazingly great news. We still need to validate this information, but if it is true, it presents us with more challenges around prevention. What does that mean, concretely, for our sexual activity, both in relationships and casually? How are we going to help gay men to develop instincts and knowledge about all the nuances of that simple fact — that the risk of transmission from an infected man who has an undetectable viral load to an uninfected man are minimal or, for all intents and purposes, non-existent?

Over the last 20 years we have learned a lot about what has worked and what hasn’t worked in terms of prevention.

NL: So what are some examples of how prevention campaigns have changed over those 20 years?

BR: One thing we have learned is that the most successful efforts have been those that have contextualized gay men’s lives. For example, how can you think about protecting yourself if you fundamentally believe that you have no worth? That is a huge challenge.

Over the last 10 years, an increasing number of organizations developed projects that stepped back from the exclusive “Just use a condom all the time!” message and instead employed more complex and challenging prevention methods that account for the full spectrum of gay men’s lives, including psychosocial and political aspects. Certainly condoms will always be part of the prevention message when it comes to sexually transmitted infections, including HIV, but we have learned to “wrap the message” in much more sophisticated ways.

And in several years, another generation of gay men will hopefully decide to reinvent and reinvigorate the messages again — as they should. None of this is static. The messages have to closely follow the population, its values and its needs. Our experience changes, our language changes, our culture changes and the messages have to change as well.

NL: Can you paint a broad picture of the gay men’s health and wellness movement for me? What is the vision?

BR: Gay men’s health and wellness means looking at the physical, mental, social, spiritual and sexual well-being of gay men. We also have to trust that, for the most part, gay men take this epidemic very seriously.

I think we are seeing the beginning of a paradigm shift. In Montreal, we just finished a consultation in the community where we asked gay men what their health priorities were. An overwhelming majority said HIV prevention and sexual health were the most important issues. But they were not the only issues. For example, loneliness and solitude were the next most important issues on their minds.

So our organizations are moving from being HIV prevention organizations that use gay men’s health as a means of prevention, to being gay men’s health organizations that seek to understand the health issues that gay men face while integrating HIV prevention as a priority.

NL: I’ve heard older activists say that this kind of movement existed before HIV and that the epidemic got us off track. Is that true? What was happening, say, in the 12 years between Stonewall in 1969 and the first reported AIDS case in 1981?

BR: Gay men and lesbians, together and separately, were mobilizing for decades both before and after Stonewall in New York. Stonewall captured the imagination of many people in the community but it was not the first event in the continuum of gay and lesbian liberation.

In the early years of gay liberation, the priority issues were political and social in nature. That isn’t surprising since gay men and other sexual minorities were living in a time of imposed psychiatric treatments, police repression and imprisonment. Our organizations mostly saw health from this political perspective with only a minority of them beginning to articulate psychosocial issues and specific health priorities.

So this movement existed before HIV but was also totally transformed by HIV. That is understandable, from a historical perspective. Whole populations of gay men were being wiped out by AIDS — in fact, a whole generation is almost totally gone. I was a student in Halifax and attended the last meeting of the Gay Men’s Health Association, which became, that night, the Metro Area Committee on AIDS. We decided to vote our health association out of existence and to transform it, as a reaction to the crisis.

At the time, this was a noble and elegant thing. No one questioned that. We had to move into an emergency mode, improvising to inform gay men about the urgency of prevention. Everything else had to take second place, and anyone who proposed differently would have been condemned, and I would have been one of the people condemning them. So I can’t say that it took us off-track because we had no choice. It was our tsunami.

NL: Wow. For younger gay guys like me, it’s hard to imagine. So what does a community do after something like that? Where does that leave us in 2008?

BR: Well, 20 years later we began to feel that we may have thrown the baby out with the bath water. And there are many gay men who feel that they have not been well served by the AIDS service organizations they founded. Sadly, many ASOs tripped over each other in their haste to disassociate themselves from the gay community.

My first job in Montreal was a support services coordinator for Comité SIDA Aide Montreal. The vast majority of staff, volunteers and clients were gay men, accompanied by a lot of lesbian allies. I’ll never forget sitting at a staff meeting and being lectured by the administration about the importance of our organization being totally disassociated from the gay community. That is the abnegation of a community development approach, and it was an even greater betrayal of gay men.

For the most part, we have never seen funding for prevention among gay men in Canada that has in any way been commensurate with the number of people that were infected and at risk in our community. In some of our larger cities and provinces, there were basically no HIV prevention strategies or programs tailored to gay men in an era when we were the most impacted. That is not great health policy.

NL: I know you’ve been critical of prevention campaigns that use fear to try to motivate gay men to use condoms. So what’s the new message? What replaces fear as our motivation to practice safe sex?

BR: I think we are becoming much more sophisticated in the way that we approach campaigns, despite some relatively recent campaigns that have still used horrible images. I am thinking of COCQ sida in Québec and their campaign that used images of people being burned at the stake, being guillotined and lying in caskets.

But in general, research has shown that campaigns that emphasize assets instead of deficits, strengths instead of weaknesses, that reaffirm social support and make people feel better about themselves seem to be much more effective for a larger number of people.

Besides, we have to admit that people are not afraid of HIV in the same ways as they used to be. How could they be? We are not living the same reality as we once did, and to pretend otherwise would be misleading. If we were using the same messages as 1987 or 1995 then those campaigns would be a total waste of time and resources.

NL: You’ve previously discussed the idea that gay men are now equipped for “tools beyond rules.” What sorts of tools are you talking about?

BR: I think we made a strategic error in many of the campaigns that promoted rules and laws of behaviour. We have survived as gay men by breaking rules — if we hadn’t broken the rules we would not be out, we would not exist. So campaigns that came off as preachy to us, finger-wagging in attitude, may actually have backfired.

Today we look more at tools instead. Take for example the Assumptions campaign (“How do you know what you know?”) that was launched in Canada in 2004. It assessed where gay men’s minds were in terms of sexual behaviour and risk and then tailored a message that took that into account. It is probably one of the most successful explicit HIV prevention campaigns undertaken anywhere. When gay men read the various questions that the campaign posters posed, they saw themselves in them. It was authentic and timely.

In Quebec, one of the most widely remembered campaigns told gay men they had a right to live and a right to be happy and respected in society. It encouraged gay men to have certain attitudes about themselves and their place in the world. It challenged homophobia in society and internalized homophobia. It said maybe things would improve for gay men, it gave hope and it encouraged gay men to value their own lives. People loved it.

NL: How do we ensure that the basics of HIV transmission are still reaching new, young gay men and men who start having sex with men at a later age?

BR: Each cohort of gay men that comes out needs to know about safe sex in ways that are appropriate for their generation. That piece is absolutely essential and will remain so, as long as HIV is around.

But look at our accomplishments over the last 25 years! Recent studies show that the vast majority of young gay men know about prevention, know how to avoid getting infected, and that most of them practice safe sex. In Canada, around 75 percent of gay men practice safe sex. We need to choose campaign messages that keep giving them incentives to maintain those behaviours.

Ultimately, perhaps the most important HIV prevention work that we can do is to encourage gay men to value their own lives, sometimes without even referencing HIV. That seems like a contradiction to some people — that we can do prevention work without always referencing HIV — but the experience of the last three decades shows that it is effective.

The other new prevention reality is that we now have many gay men with HIV in our community who are healthy, active, productive, sexual and living long lives. This is a wonderful new reality, but it means that one message no longer fits all gay men — and we have to admit that one message probably never did anyway. Prevention campaigns must account for this and create messages tailored to the needs of HIV-negative gay men.

NL: Séro-Zéro in Montreal is making this leap from HIV prevention to gay men’s wellness. And the gay men’s project at AIDS Vancouver recently broke away to form Health Initiative for Men (HIM), a stand-alone organization. Is this the beginning of a trend?

BR: These shifts are reflected in movements around the Western world. I think it indicates that something important is happening. Gay men are reclaiming a health movement that had been left to languish 30 years ago. This is not to deny the importance of HIV as a health issue, but to acknowledge that we are whole persons.

Several years ago I conducted focus groups for gay men across Canada to ask how they saw their health issues. It astonished me to learn that the vast majority felt that if they were HIV-negative, they were healthy. Other issues — like suicide, depression, loneliness, cancer, smoking — didn’t even register with them.

We have looked at gay men’s lives through one single lens — HIV — for so long, that these men themselves are often incapable of seeing any other issues. Some studies show that more men will die of suicide or of lung cancer than of HIV, but there is no place to talk about these issues until we see gay men’s lives more holistically.

NL: One last question, Bill. Folks describe this as the “post-AIDS era,” given that HIV negative men are living longer, more stable lives. That’s a source of hope, but some fear that the post-AIDS era means HIV will slowly fall off our radar as we focus on other issues. How do we hold the two in balance?

BR: I’d like to name that differently and say that we are in the “post-AIDS crisis era.” No expression has been more controversial in the community than saying we are in a “post-AIDS era.” As long as gay men are sick, are being infected, we can’t say that we are out of the woods.

But a community cannot be in an acute active crisis for 30 years. It is psychologically impossible. Humans, even when they have experienced the worst cruelties and have had to adapt to horrendous circumstances, learn to cope. People coped in the ghettos and concentration camps of Nazi Europe and in every other horrific circumstance unleashed upon humanity. We find ways of living within difficult situations. We have to in order to survive.

Gay men have learned to cope with HIV in ways that we couldn’t have imagined 30 years ago, because 30 years ago we were in the middle of devastation. HIV cannot fall off our radar until there is no more HIV to be detected on the radar. And nothing in the emerging gay men’s health movement intends to change that. We simply want to do things more comprehensively and, we believe, more effectively.