My editor 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.

Whenever I see news reports about anything related to HIV, I have to brace myself for the parts with numbers. Not because I'm afraid of numbers – I'm geeky enough to have participated in math contests when I was in high school, and even won prizes at them (math books). No, I brace myself for what people will do with numbers to try to validate their points of view. 

Most of the uses of numbers that leave me shaking my head involve a lack of context. A classic is the use of percentages to describe trends in HIV infections. First of all, one should be clear that in our society without compulsory and regular testing of the entire population, we are usually talking about statistics regarding diagnoses, and only sometimes about estimates of actual HIV infections. Second, one can't compare on pure percentage changes in these diagnoses without suggesting that an increase of diagnoses in a particular group from 2 to 4 (100%) is somehow more significant than an increase in another group from 300 to 303 (1%). If you see the percentages, you need to also look for the numbers. 

When you don't see the absolute numbers, you might not understand other aspects of the meaning of what you are seeing. It is all well and good to say that gay men are an increasing portion of the new diagnoses, but are they a bigger slice of a shrinking or stable pie? Could those absolute numbers also be decreasing, while the percentage goes up? The percentages won't tell you that on their own. 

There are other times when the absolute numbers on their own don't tell the whole story. I remember my own reaction in the context of a national meeting once when someone from a more rural area talked about a "huge" increase in people being seen in the local AIDS organization. The number was 4 or 5 in the past year. The organization I worked for at the time regularly welcomed between 40 and 60 new HIV positive people every year, and it was only one of almost twenty organizations in the city. In the context of the population of the region being served, however, those 4 or 5 people were probably very significant. 

Another little statistical game occurs in the classifying of the data. It is a very difficult task to classify people when we are talking about those numbers of new diagnoses. People don't stay in their own boxes, so might just fit into several different categories or might even justify a new category that epidemiologists and those responsible for surveillance are not ready to create (it's difficult to follow trends when you keep splitting the lines into their sub-categories). There's more than a little interpretation involved in the classifying, so it's worth asking questions about the results. 

One of the things that has most annoyed me recently is the interpretation of how prevalent condom use is among gay men. We all know the community started at zero – or almost zero – condom use at the beginning of the 1980s, adopted the condom strategy extremely successfully, and that use seems to have declined lately. When the proof of that decline is shrouded in odd definitions, however, I get suspicious. I recently saw one definition that classified people into two groups: those who have consistently used condoms in the last six months, and those who had at least one incident of not using a condom in the last six months. Now suddenly the portrait is of condom-users and condom-eschewers and the person who had sex sixty times in the last six months, only once without a condom, finds himself in the latter group. That's how you get to a rate of consistent condom use somewhere south of 30%, but it doesn't seem to be a very accurate portrait, does it? 

Although I have not entered any math contests lately, I reiterate my geeky childhood love of numbers. I just have to add to that love a cheeky appreciation of context and a freaky suspicion that will always drive me to see what else my little number friends might be telling me. Or hiding from me.

Read Michael Burtch's article (My Relationship Status) - and comments - here.

I'm a gay man of a certain age. My experience with HIV in my community goes back to the beginning, even if my awareness of my own infection does not. I was there as we learned from the first reports that something was going very wrong and that – given apparent indifference on the part of many, but not all, authorities – the community had to do something about it. I have watched friends die. This long history has shaped my relationship to HIV and my attitudes about it. 

Having been diagnosed at a very advanced stage of my HIV infection in 1997, I will never be sure about when I might have been infected, but I'm pretty sure I know how, not having had a blood transfusion or injecting drugs. “Who” was a question I studiously avoided because, like others of my generation, I embrace the concept of shared responsibility and I believe that my energy is always better spent taking care of my health rather than seeking to assign blame outside of myself. 

Another reason that I have (mostly) avoided trying to identify the who and when of my infection is to avoid the distinction between the "generation which didn't know better" and those "who should have been able to avoid HIV infection", a horrible distinction that fingerpoints at a younger generation when they, like we, were just being human and pursuing our amorous interests. No human can fault another for having an occasional lapse in judgment or action that might have led to exposure to a risk of transmission. I've never met anyone who sought it out or who sought to transmit intentionally; I look on it as a hazard of our time. 

I am also an aging poz guy living with all the benefits of developments in treatment, and that is shaping some of my perceptions of HIV and my relationship to it, but these are layers added on top of my previous baggage. When I was diagnosed at 37, I didn't think I would ever be 53, as I will be later this year. I'm still banking on not making it past 65, as I have no retirement plans beyond poverty and loneliness (c'mon lottery ticket!). 

I have excellent access to health care, and that is surely the reason for my relatively good health. I am preoccupied by the fact that others don't have this access – including people living with HIV who have a more tenuous relationship with "the system," but also many of my HIV-negative friends who are part of this community that is disproportionately living with this disease. I hope that we can all decry that lack of access, and do something about it, without blaming me for taking up too much of it. Without it, I will probably die, but without it I fear that others will find themselves in my place, living with HIV. 

I've had a few of those serodiscordant situations that we seem to be talking about more these days. Of course, we now like to call them serodifferent, because we don't want to sow the seeds of discord with our terminology, but I think we all understand what it means whatever the term used. I like to think that I have lived up to my own expectations of myself in each of them, that I have avoided transmitting HIV and that I have treated my partners with the respect that I expect for myself. 

I remember a time early on, before I knew of my own infection, when I met one of my favourite bartenders outside the bar after hours (there was always a bit of a crowd milling about after the bar closed in those days). This unattainable object of my desire struck up a conversation with me and, as he seemed to be expressing some interest in taking me home with him, added the information that he had HIV. My reaction was similar to that of others in my community from my generation, at least at that time: I told him that wasn't a deal-breaker for me, that there were plenty of ways for us to enjoy ourselves without having to worry about HIV transmission. The relief that washed across his face bespoke the ravages of past negative reactions, and I felt bad for him about that. After we got to his place, he had more revelations for me, and we took more precautions to make sure that I didn't get anything else either. And we both (well, I can only speak for myself) had an excellent time. 

I spoke of another of my experiences here. A time when I knew my status and didn't disclose until asked (after the fact), but ensured for my own mental peace that I did nothing that would have possibly transmitted the virus I never wanted to someone else, even someone I knew only fleetingly. I know I didn't disclose because I feared the response would be overblown and negative, and the reaction when I responded honestly to the question asked late confirmed that for me. If I am at all disappointed in myself, it would be in not affirming my status at the outset, but in my defence that is often unrealistic in the face of expected hostility. I would note for those readers about to accuse me of being a criminal that I then satisfied all the criteria as set out by the recent Supreme Court decision to NOT be criminally responsible, so please keep your insults to yourselves. 

I had another experience that put me in the position of my bartender friend once. We were still in the bar and the "run for the exit" lights had not yet been lit, but the guy to whom I disclosed my status was straightforward and realistic in his response. We went to my place and we were able to negotiate what we both felt safe about doing. He could express his fears, even the irrational ones, and I could respect his choices and not be slighted by them. Again, we (there I go again!) had an enjoyable time. 

Let me add another one. A guy I met on the street who came to my place, who disclosed his status to me upon hearing where I worked (always a good sign that knowing I worked for an AIDS organization made him feel comfortable enough to disclose his status to me). His disclosure led to mine, and he proposed an activity (not the one you're thinking of) that ran up against my own hardwired behavioural restrictions that are part of my HIV baggage. I couldn't bring myself to do it, we discussed it (not discussion group style, but the quick exchange of words) and we adapted ourselves. I knew that what he was asking of me was not particularly risky and, considering our seroconcordance, not at all risky, but I couldn't go there and he wasn't going to take that personally. 

Somewhere in all these tales and thoughts I would like to find a lesson, for me and for others. If we could all be counted on to treat each other with respect as human beings, we might be able to end this epidemic. I should be able to disclose my status and not be faced with automatic rejection and fear. I should also be able to work with the fears and limits of my potential partners. For some, this might mean not having sex at all, or having a different kind of sex than either of us set out to have. But we should still be able to be respectful in how we express ourselves.

Or maybe we should just call me Pollyanna.

I think I have a disagreement with my editor, Bob Leahy and his recent article. It isn't a huge one, but it is significant and it's all about disclosure. 

I think it's pretty clear that we both agree that disclosure should not be the subject of criminal prosecutions, so we're not completely at loggerheads. But Bob thinks we have a moral obligation to disclose our status in most sexual and non-sexual situations and I wouldn't put it quite that way. I accept the moral obligation to not transmit HIV, to do everything I possibly can to prevent someone else from being infected, but this for me does not necessarily include disclosure. 

Oh, I'm not against disclosure at all. I actually agree with Bob that disclosure is the key to a number of desirable outcomes, like reducing HIV-related stigma and actually being able to have frank discussions with our partners about HIV. We won't achieve those things from inside a closet or behind a shield. 

By now you're wondering if I'm just playing some kind of semantic game with you and if I am actually firmly in Bob's camp. I might reject the moral obligation to disclose, but I embrace the political imperative to do so. There's the difference for you: someone who doesn't observe a moral obligation has somehow failed as a human and probably has some interiorized culpability to deal with. Someone who refuses the political imperative to disclose as a part of a larger effort to destigmatize HIV has failed me – and you – as an ineffective ally. 

I will always go back to the experiences of the LGBT movement with respect to disclosure, or coming out, as it is better known in that context. It takes familiar people coming out to change attitudes. Just this past week, a Republican Senator's son came out to his father and the Senator, reflecting on this new reality for in his own life, changed his position on marriage equality. Nobody ever changed an opinion about his or her reality by hiding it from the people whose opinions need to be challenged. 

I recognize that stigma exists and that not everyone is in a position to disclose HIV status broadly. I would never advocate – even as a political imperative – that an individual be compelled to do this. It remains the choice of each person, but it should also be with the full knowledge that things will not improve if we keep our status to ourselves like a dirty secret. Our ASOs need to help with this, not just preparing us for a testimonial from time to time, to serve as cautionary tales in the context of prevention activities or as symbols of lived injustice.  No, we need programs that focus on developing strategies for disclosure and offer support through the process. 

Knowing that the nice lady I see every day on the bus is seropositive, that the man chatting with his friends at the next table in the restaurant is living with HIV, that my cousin is in the same situation, or my aunt…these are the things that will make HIV less scary for people. Familiarity means that we can talk about our experiences in a real way, show ourselves to be real people with hopes and dreams that sometimes get frustrated because of some other people's bad attitudes – and how could they treat me, someone you know and like, in such a terrible way? 

Prevention is another thing that we could be working on from our positions of openness. We're well past the fear messages, or we should be because they don't work. What we need is frank talk about the hassles that come with living with HIV and the motivation to avoid that infection. I'm not a scary monster, I'm a person with some viral challenges in my life that I never wanted or sought, and maybe my reality will motivate you to make different choices without running in the opposite direction. 

Those changes don't happen when HIV is shown by our own attitudes as the shameful thing about which we do not wish to talk in public

Needless to say, I feel a rant coming on. What's provoking me this time? A series of events around the issues of police and criminalization of HIV. I would be more precise and say criminalization of non-disclosure of HIV status in a context of risk of transmission, but you will see that not all my provoking stories fall into that category. 

First of all, a terrible case in Québec where an HIV+ woman was being arrested and spit on the police officers. If we are to believe them, she managed to spit into each of their mouths and eyes, which would be quite a feat, but surely irrelevant to the risk of HIV transmission. The trouble is that they were ignorant of the modes of HIV transmission and their fear led them to post-exposure prophylaxis (PEP), the "horrible" suffering of taking HIV meds for a whole month, paid time off work…and one of them even had to move back home with his parents. Considering the uselessness of prescribing PEP in such a situation, my first thought was that I hoped they would experience every conceivable side-effect of the medication during their useless paid month off of work. Consider also that the woman was considered to be such a menace to society (such a talented and accurate spitter, I guess) that she was denied bail and spent more than ten months in jail. While all parties later recognized that there was no chance of transmitting HIV in this way and the charges were reduced from aggravated to simple assault, the fact that the woman was HIV+ was considered as an "aggravating factor" in her sentencing. HIV bigot say what? 

Now, the case of the woman seems to have emboldened a collection of police unions and others like them to re-propose a law that would allow a police or correctional officer who is exposed to a biological liquid to require that the person in question be tested for a variety of infections, including HIV and Hepatitis C. Some provinces, as I understand things, have such laws, and this is not the first time that these groups have tried this here. It has been pushed back as being useless in practice and I have every confidence it will be again, but there is really nothing like trampling uselessly on others' rights because of your own unfounded fears. Maybe we should invest in teaching police officers how to arrest people without making them bleed. 

And my final trigger element was a news report of yet another person being charged in Ontario for non-disclosure and the police going public with name and photo, looking for additional "victims". You found your victim: he's the one you arrested and decided to convict in the public sphere before his trial. 

All of these things in the shadow of the recent Supreme Court decision, which was supposed to give us more clarity. All it gave us was more doubt and more fear. 

I think the basic injustice has been in addressing the issue of non-disclosure in a sexual assault/assault framework. Let's be clear here that the thing people are being accused of is not saying something, but the language related to the charges is violent, leaving the uninformed outsider with the impression that a violent act has taken place. No wonder the general public is scared of us. 

We might be in a different place today in the realm of public opinion if these cases were prosecuted as fraud instead of constructing an infrastructure of violence on top of them. Not that I'm endorsing the use of the criminal law, but let's be a little more honest about the nature of the offence. 

When someone steals another person's life savings through some kind of dishonest investment scheme, do we call that financial assault? Withholding the necessities of life? Attempted murder? Not at all. We don't see this person as inherently dangerous to society, as reprehensible as the results of their actions are. After all, what this person did was lie or not tell the dupe that the investment was going into a pocket and wouldn't be coming back, not more. Can someone explain to me how that is different from not disclosing HIV status? Is not saying some words more violent than not saying other words? 

Yes, I can hear the justifications. Silence or misrepresentation means that the other person didn't consent to sex, so it is sexual assault. But the other person did consent to sex, and did so in a context in which we all know that there are sexually transmitted infections and ways to avoid catching them. This against a backdrop of public health messaging over the last thirty-something years telling us all that we are responsible for our own health as well as that of our partners. So is there an excuse for the magical thinking that I alone am the exception and therefore your silence is a physical assault on me? Is that analysis not even less valid in a community where HIV prevalence is high, meaning that we are even more targeted by the public health messages and ought to be even more aware of the chances we take? 

I might have a whole different take on HIV disclosure if we lived in a world where people didn't suffer discrimination and exclusion for their HIV status that amount to nothing more than unfounded fears and moral judgments. In this world, however, the choice is to expose yourself to those dangers and all their consequences or be accused of being a violent predator. Now THAT is victimization.

I think all of those of us living with HIV have mixed feelings about problems relating to aging. On the one hand, aging means we're still here to have those problems, and who would have expected that twenty years ago? On the other hand, we do seem to get some of these problems a bit earlier than others and we are constantly confronted with the puzzle about whether our symptoms are due to age, HIV or our meds, or some terrible combination of them all. 

I just went through that experience where ENT progressed from a mobile tree-like creature in the Lord of the Rings series to an Ear, Nose and Throat specialist. That's quite some evolution! And, as an aside, the experience allows me to marvel at the accessibility of these specialists in our system, at least for people in major urban centres like where I live. And all covered by medicare, too. 

I got this referral from my own doctor for a couple of reasons. First, I have been having some sleep problems, like falling asleep during meetings (good thing I'm not an MP!), although I must say that I tend to have enough awareness of the conversation to be able to add my two cents worth when called upon, or at least I like to think so. So my ENT had a look at my palate and related parts and I don't seem to have any structural difficulties that would lend themselves to sleep apnea. I will just have to work on my habit of staying up too late and trying to get up too early. 

The second problem is one you might want to read about when you are not eating, if you're at all squeamish. I have a problem of accumulating ear wax. This, to the point where I actually had a blocked ear for several days when I visited Prince Edward Island last summer. There is nothing more annoying than the ups and downs of air travel without really being able to clear your ears, or the surreal half-heard experience of the world around you when you really weren't expecting it. 

I have had advice over the years about how to deal with this or how to prevent it. I do not use Q-tips (or generic cotton swabs), as I know those are verboten. I have used a little peroxide to try to dissolve and clear wax once it has built up, but this has limited efficacy and I even managed to burn the skin around my ear with peroxide just before my vacation, being so desperate to clear the wax that I repeated the procedure too many times. 

I've also been told that putting a little drop of oil in my ear will help keep the wax from accumulating…and the suggestions have been as diverse as olive or mineral oil. The ENT tells me that it may succeed in softening the wax that is there, but will also add to the blockage, at least temporarily. 

So today we did the old fashioned old man solution to the old man problem: giant metal syringe with warm water injected into the ear until the wax "plug" (anyone suppressing a gag about now?) popped out. Repeat for ear number two. 

What a relief as I head off on another plane trip to go to a meeting out of town! Thank goodness for the old ways as solutions to the age-old old age problems!