08 May 2013

Challenges of Prevention

My editor over at Positive Lite asked me to write about the future of prevention. In taking up that challenge, I am discovering that I probably have more questions than answers, but I do have some ideas of the challenges we must meet if we are really going to stop HIV transmission.


Motivation.

Scary "death" and "doom" messages will not motivate people to take measures to avoid contracting HIV. Fright messages sometimes have short-term effects, but these truly lack credibility in a context where a lot of people (particularly in the gay community) know someone living with HIV and living quite well with treatment. We need to be realistic talking about what it means to live with HIV today. I personally don't look like I'm about to die (not of HIV/AIDS anyway!) and I have a fairly active life, but I wouldn't wish my HIV infection on anyone else. We need to learn how to share our experiences of living with HIV in straightforward, honest ways if we want people to understand why they might not want this virus.



Risk Assessment.

In all health issues, the quantification of risk is problematic. I have a friend who, in the course of his internship, was sometimes called upon to deliver a prognosis to an ailing patient. "How much time do I have left?" rivalled "What are the chances of the operation not working?" for tops of the unpopularity contest. He was reticent to tell the elderly patient that there was a 4% risk of death in an operation because it was so unlikely to occur and so likely to panic the patient to hear and try to interpret the words.

How then do we explain that a single act of condomless anal sex with a person with a high viral load might have a transmission rate somewhat less than 1%, but that people still get infected with HIV? I know there has been some degree of reticence to share those percentages of risk because they are so very difficult to wrap our heads around, but that is an attitude that smacks of paternalism. If it is difficult to understand, then our challenge on this point is clear: learn to explain risk in a way that helps people to make informed decisions about their actions.



A Full Toolbox.

There are many approaches to prevention these days, ranging from motivational counselling all the way to pharmaceutical intervention. We need to figure out which tools work best for which people in which situations. Then we need to be able to make sure that those people have access to the tools they need, understand the strengths and limits of those tools, and know how to use them. With budgets for prevention stagnant and some new approaches taking up a lot of virtual space, those who make decisions about what to fund might be tempted to put all their eggs in one basket. We have to continue to recognize that there isn't a single approach that will work for all and fight to preserve the diversity of the available tools even as we work to understand them better and to improve them.



The Pleasure Principle.

Most of the time – if we're lucky – sex is about pleasure. When our prevention messages are peppered with words like "safe" and "secure" or "protection" it shouldn't surprise us that not everyone wants to hear them, or even listen to them. We need to talk more about what to do, and not as much about what not to do. This goes beyond how our messages look (we've learned to make them sexy) right to the core of what they say.

Since I am given to wild and sometimes inappropriate metaphors, let me just charge headlong into this one: Waterskiing is not all about the life jacket. That life jacket might be an essential tool in the end, depending on how you go about the sport, but the waterskiing is about hanging onto the rope, getting up on the skis (and staying there!), and it's even more about the sun on your face, the wind in your hair and the pure exhilaration of skimming across the water behind a powerboat. We need to focus on that approach when we talk about sex.



Autonomy.

We need to trust people to make choices for themselves. That means sharing all of the information in the best way to ensure that it is truly understood and letting people determine how they will act on it in their own lives. I would hasten to add that one person's autonomy doesn't trump another's. I'm trying (and probably failing) to make this point not be about disclosure, but if we lived in a world where people wouldn't face unreasonable discrimination after disclosure I would be happy to include it. And when I talk about discrimination, I'm not talking about getting turned down by a potential partner, but about losing a job or not getting one, or about losing all semblance of privacy when the person trusted with the information decides it needs to be shared.

Back to the autonomy part. People will not necessarily make logical or sensible decisions when it comes to sex and pleasure. We wouldn't be human if we always acted logically and based on the best available evidence. Humans have issues like self-esteem, desires, fears, urges…these all push logic out the nearest window from time to time. Sometimes we make bad choices for ourselves and sometimes we make good ones. Sometimes good and bad are a little difficult to sort out. That doesn't mean that someone else gets a licence to tell me what to do with a willing partner; it means that the prevention challenge is to try to ensure that I have all the information and tools I need to make the right decision for myself, and that my partner has those too.

I don't know if we'll find the ideal approach to prevention or the means to make sure that the multiple approaches that work the best for now are fully available. I only know that we can't stop trying. One new infection is one too many.

Check out this article at Positive Lite here (with its own set of comments, if there are any).

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