Reading Bob Leahy's recent article on disclosure brought me back to some discussions I have had in the past with others involved in the HIV movement. Are we doing ourselves any favours by building and cultivating a culture of secrecy around HIV? 

Now don't get me wrong here. I'm not advocating that every individual be required to share his or her personal health history with everyone on the street. This question is also not about the criminalization of non-disclosure of HIV status to our sexual partners when there is no practical risk of transmission. This is about our collective personal decisions to keep these things to ourselves and the broader impact of that approach. 

Let's go back to an earlier time to start this discussion with an issue that ought to show us the way to go. In the days (and years and decades) before the emergence of the gay liberation movement, LGBT people zealously guarded their privacy, motivated by a very legitimate fear of persecution. If it became known that someone was gay or lesbian, s/he wouldn't be eligible for a sensitive government position, because the "dirty" secret would expose her or him to the possibility of blackmail by the enemies of the state, compromising state security. That individual could only fully participate in society by hiding from others that thing that was so detested. 

Things started to go another way in the 1970s. When someone openly affirms his or her sexual orientation, it is rather difficult to extract favours from that person by threatening to expose the secret that is no longer secret. Yes, it took a long time for the benefits of the movement to really take hold, and we can see our brothers and sisters in many places, including in many parts of the United States, fighting those battles today. But you will notice what has changed: the battles are fought openly by people who are not ashamed of themselves. Their very existence as the sons and daughters, brothers and sisters, cousins and neighbours of others who do not share their sexual orientation has served to make the strange more familiar, the scary more acceptable and less dramatic. 

The fight has not been easy and each affected individual struggles with the issue on a personal basis at some time in his or her life. It is easier for some and not always possible for everyone. But we can't deny that LGBT representation in our popular culture – truly the nightmare of our enemies – is ubiquitous and contributes to making us more broadly socially acceptable. 

Getting back to HIV, what are we doing? We are defending the invisibility of people living with HIV while we bemoan the fact that our society seems to have forgotten about us. How can we expect the advances in HIV treatment, and our expectation of living pretty much as long as our friends, to be understood by others when the AIDS service organization is behind the third unmarked door on the left? We are so focused on protecting the confidentiality of individuals that we even make it difficult for those who wish to do so to identify themselves publicly. 

I remember a particularly ironic situation many years ago in the context of the Canadian AIDS Society Forum, an activity for people living with HIV attached to their annual general meeting. We produced a resolution from the Québec caucus calling for the movers and seconders of resolutions at the Forum to be able to be identified by their full names if they expressed the desire to do so. The resolution passed in the broad assembly, but the irony arose when the minutes of that meeting were produced the following year. My name, as mover, and the name of the seconder of the motion were blacked out like sensitive information on a government document released reluctantly through access to information. I might have laughed if it weren't so sad a spectacle. 

How many of your AIDS service organizations remember those they have lost with first names and last initials only? Most, I should say. How many are proud enough to announce their presence in the community with a legible sign? Few, I expect. 

I'm not insensitive to the well-founded fears of people who might well suffer rejection or persecution based on their HIV status. Just like in the LGBT movement, however, some of us are privileged enough to not be risking as much by sharing our status widely and loudly. In doing so, we will make it just a bit easier for the next wave to do this, and we will eventually make it more possible for the person who is newly diagnosed with HIV to be able to talk about that diagnosis with friends and family, and more likely that those friends and that family will not run screaming from the room when it happens. 

Yes, let's be sensitive to the needs of those for whom this will be difficult. But let's start taking those first steps down the road toward the elimination of HIV stigma.

As I write this – 22 December 2012 – I am marking the fifteenth anniversary of my diagnosis. 

This anniversary thing is funny. It may be that the event itself is so marking of our lives that it will always stick with us, the moment when I went from "us" to "them" (or, more accurately from my current perspective, from "them" to "us"). It may also be that telling our stories is such an integral part of living with HIV that it would be unthinkable not to have a well-developed beginning to our stories. 

22 December 1997 is the beginning of mine, the date when I went gasping to my doctor's appointment and then with his note to the emergency up the hill. The date when I started discovering the solidity of my support network of friends and family, however geographically near or far. The date when I started to be dependent on the pharmaceutical industry for my life and health (and I must say they have done an excellent job so far). 

The little new life that was born that day is now fifteen years old – who would have believed that? Now it is her time to come out and take her place, just like little fifteen year-old girls all over Latin America do when they take part in their quinceañera celebrations. So let me, with some concern for the cultural misappropriation and no small amount of irreverence, compare my experience of HIV to a fifteen year-old girl from somewhere south of here… 

For many, the celebration begins with a mass. Okay, here I am going to have to diverge from the tradition right away: there won't be any role for the organization that just welcomed with open arms the Speaker of the Ugandan parliament who is pushing for the adoption of the latest incarnation of their new homophobic law. My celebration will have to begin, most appropriately, with gas. Yes, you would think I have been eating nothing but beans for the last fifteen years, as my intestinal fuel factory has been most productive since I started taking those meds. 

At this celebration, we do find something with which I can get on board. The chambelanes, who accompany the debutante, put me in mind of those original four CD4+ cells I had when I was diagnosed. Yes, four, so you can understand why I might have doubted getting to this day all these years later. But my faithful chambelanes have stayed with me and multiplied, and I am all the better and more grateful for it. 

Now the Quinceañera (the girl IS the event) receives some gifts to mark this occasion. A tiara! Handily, I already have one of those – bought years ago to attend a hat party in another city (surely a tale worth telling separately), so my adoring friends and family can steer clear of Swarovski this time around. A doll – my last doll as I enter into my adulthood? Not so sure about this one, either, as I tend to prefer my humanoids living and breathing. Maybe something to look forward to as I progress into my later teens? Any dolls out there willing to make the sacrifice? 

The dress! If you have seen representations of this phenomenon in the movies, it really is all about the dress! Try this movie, which I am looking forward to watching as part of my celebration this year. I'm afraid I will be like the heroine and be forced to wear a hand-me-down dress and give up on my dreams of travelling in a Hummer limo. Unlike the heroine, I am not pregnant (just wanted to put that out there to squelch any rumours), but I am probably a little less chaste as well (sorry Dad: see above notes on dolls). 

The other thing I have been told of is the cake. The cake! Apparently as tall and as overdecorated as it can be, but this is really not my style either. I tend to go for complexity in the flavour, but not in the look. And I don't want to be too cake-focused, either, given those pregnancy rumours I referred to above. So it's a simple looking, complex tasting work of culinary art for me, and you may also partake if you are kind to me. 

This is also apparently a time of firsts: first make-up in public, first high heels…all those things that one might associate with a grown up woman. The Wikipedia entry on this notes that many of these "firsts" are no longer firsts in a world in which we all grow up so fast. It should be no surprise, then, that this fifty-two-year-old Quinceañera doesn't have a lot of undiscovered or unexperienced things left in life either. Are your visions of my purity dashed on the rocks of reality? Mine too. 

All in all, I'm looking a little less like a the picture of purity and innocence on the cusp of adulthood and a little more like a drunken and gassy drag queen stumbling out of a taxi at 5 am. At least I have my dignity! 

So raise a glass to me this week to celebrate my diagnosis' coming of age. And we'll see if we can't wring another Quinceañera out of the prequel – one doesn't arrive at 4 CD4+ cells without a back story – and yet another out of the sequel, as I show no signs of fading just yet.

To many, it must seem like the recent US elections were a great victory for the LGBT community. Not only did they bring a victory for Obama, responsible for removing a number of impediments to equality, albeit after a great deal of pushing by the community, but also a number of remarkable victories for other openly gay or lesbian candidates. 

Your mind might have gone directly to the marriage votes when I brought up those elections. Maine voters decided to allow the state to issue marriage licences to same sex couples and voters in Maryland and Washington voted to approve legislations allowing same sex couples to marry that had been passed by their respective legislatures and then challenged by referendum. In Minnesota, the victory was a defeat of a proposed amendment of the state constitution to define marriage as being between a man and a woman. 

I'm certainly not against any of those outcomes, but the processes leave me cold. 

Human rights protection is not something that you submit to a popular vote. That is the very antithesis of the protection of minorities — submitting those protections to the will of the majority. In my opinion, the best measure of how successful human rights protections are lies in their capacity to protect the rights of the most despised minorities, not those who have been able to make themselves marginally more acceptable to a bare majority of the population or raise enough money to fight extreme electoral battles that may come around again when next they can. 

How much do these four victories — or three victories and a reprieve — contribute to the marriage equality fight in the other states? Do they make it inevitable or have they set up the population for another what…41?...battles that will cost millions and whose outcomes will be far from certain? With this approach, some states with poorer LGBT communities or stauncher opponents may never extend the same protections and rights to all. It might not take long for those who have fought their own hard won battles to lose interest in contributing to and fighting for others to benefit from what they already have. 

And what about minorities who have not managed to convince a majority of voters that they are worthy of protection? If you read any of the comments on any news sites after the recent Supreme Court of Canada decisions on the criminalization of HIV non-disclosure, you can well imagine how people with HIV might fare in such a popularity contest (not very well, if you need me to spell it out). 

So yes, let's all celebrate the election of legislators and executives who are willing to stand on the side of protecting the civil rights of minorities. But don't expect me to stand up and cheer for a victory in a process that should never have taken place to submit the rights of a minority — even an apparently well-liked minority, at least for the moment — to the will of the majority. Accepting the validity of that process sells the rest of us down the river.

Let me start by qualifying my level of expertise. I have been a lawyer, but not for more than ten years, so I am reading these two judgments with a strange mix of past legal training, current political commitment and the often paranoid eye of someone who could be directly affected by it. If you're willing to swallow that (couldn't help myself), then feel free to read on and agree or disagree with me. For more rigorous legal analysis, I would suggest the Canadian HIV/AIDS Legal Network, the Coalition des organismes communautaires québécois de lutte contre le sida  or the HIV/AIDS Legal Clinic of Ontario. 

Background (simplified version) 

The first Supreme Court of Canada ruling that started shaping the legal response to HIV came in the Cuerrier decision in 1998. The facts of that case are relatively important, as they come from a time before HAART (and therefore before we had conceived of an undetectable viral load) and they involved a man who did not use condoms with his partners (which limited what the court could officially say with respect to condom use). 

The court constructed a scenario in which the absence of disclosure of HIV positive status meant that the uninformed partner could not give consent to the act, and a sexual relation without consent is a sexual assault, or at least an assault. Add to this the likelihood of an infection leading to serious bodily harm, should it occur, and the offence becomes more serious, like aggravated assault or aggravated sexual assault. 

The court's test in Cuerrier boiled down to this: if the act was one which could involve a significant risk of HIV transmission (bodily harm), the non-disclosure of HIV status negates the consent of the other person and the criminal law is engaged. The problem we would later discover was the lack of clarity about where the line should be drawn on what constitutes a significant risk. Would condoms reduce the risk below the level of "significant"? A minority version of the judgment written by Justice McLaughlin speculated that condom use might do that, but because Mr. Cuerrier had not used condoms and a majority of the members of the court didn't sign on to Justice McLaughlin's reasons, this speculation didn't have the force of law. 

More recently, we have started asking whether an undetectable viral load might also reduce the risk below the level of "significant", especially considering how our public health authorities are in many cases trumpeting the virtues of treatment as prevention, and for this very reason. 

The uncertainty played itself out in conflicting decisions by various courts across the country, leading up to the two cases that were decided by the court on October 5th. 

The cases, Mabior and DC (equally simplified) 

Mr. Mabior was charged with nine counts of aggravated sexual assault involving non-disclosure of his HIV status to multiple partners. What was interesting from a legal point of view, given the questions in the community, was that he sometimes used condoms and his viral load was sometimes undetectable, giving us facts that could lead the courts to clarify some of these issues for us. None of Mr. Mabior's partners was infected with HIV. Convicted on six counts at trial, the Manitoba Court of Appeal reversed four of the convictions, where either he had used a condom or his viral load was undetectable. The Crown appealed to the Supreme Court. 

Ms. DC was charged with aggravated assault and aggravated sexual assault after a single sexual encounter prior to disclosure of her status to her partner. Her partner filed his criminal complaint in the context of his own trial for conjugal violence following their breakup four years after the alleged offence that she was charged with. (Note that he was convicted of conjugal violence, but given an absolute discharge after his complaint about possible exposure to HIV transmission was filed against her. I could go on about this, but we would be getting off track, so I will restrain myself.) She said that a condom was used, and he said not. He was not infected with HIV. Convicted at trial after the judge did some fancy footwork to describe what would allow him to conclude that no condom was used, the Court of Appeal of Québec reversed the conviction based on the fact that DC's viral load was undetectable at the time of the alleged offence, but allowed the trial judge's conclusion about the absence of the condom to stand. The Crown appealed to the Supreme Court of Canada. 

Reaction to the Supreme Court decision 

It's an odd thing to watch a complicated Supreme Court decision come out and to watch the wide range of reactions to it. The media knew it was coming out and were ready to pounce on various kinds of spokespeople for comment on what it meant. The interpretations were equally widely varied. 

Some people living with HIV and some public health experts and HIV doctors hailed the decision as a step forward. The coalition of community groups that had intervened at the Supreme Court called it "unjust" and "a major step backward for public health and human rights". You can't get much more mixed than that, so I thought it might be useful to pick apart the decisions to see which parts might be good or bad, in the eyes of someone living with HIV and also committed to working for the respect of our rights, with those limits to my interpretive skills that I outlined at the beginning. 

The public reaction to this, as gauged by the usual deluge of comments on the web sites of various news organizations, is not for the weak of heart. It can be downright scary to read some of those comments, and they betray some profound misunderstanding of HIV and HIV transmission. It would be just sad if it were not also scary. 

A new test 

The court did not sweep away the Cuerrier rule, but recognized that there were some problems with its clarity and went on to propose a new way of assessing whether there was a "significant risk of serious bodily harm". They did this by proposing an assessment of the "realistic possibility of transmission of HIV" as a way to ensure that the bar would not be set too high or too low, considering the seriousness of HIV infection. They propose an assessment of the degree of harm and the risk of transmission, which are inversely related: the more harmful the disease, the lower the risk of transmission that would be necessary to engage the responsibility to disclose. While being clear that the cases before it did not concern other sexually transmitted infections, the court did suggest that most of those would not be considered as serious as HIV, so the risk of transmission would have to be higher to engage that same responsibility to disclose. 

Still vague for you? They go to provide even clearer guidance. Paragraph 94 of the Mabior decision asserts that, as a general rule, a realistic possibility of transmission of HIV would be negated by a low viral load (as opposed to undetectable viral load) at the time of sexual relations AND the use of condom protection. The court goes on to recognize low viral load as being below the threshold of 1,500 copies per millilitre. So with those two elements, there is no criminally enforceable requirement to disclose status if not asked. 

What's good about this decision? 

Well, we have some clarity. A low viral load (<1,500) plus condom use will relieve you of the criminally enforced responsibility to disclose to a partner who doesn't ask. (I add the "who doesn't ask" on my own, because if a partner asks and is lied to, that is still fraud which would negate the person's consent.) We also have the Supreme Court of Canada asserting that in such a situation, the risk of transmission of HIV is merely speculative and not realistic, which is a nod, however cautious, to the science of HIV transmission and prevention. 

Drawing the line at a viral load of 1,500 was interesting. The court clearly understood the concept that even detectable but low viral loads reduce the chances of transmission and that "undetectable" can be in evolution (in Québec we went from viral load test sensitive to 500 copies to 50 copies in 1999, and then to 40 copies in 2010) and avoided drawing a moveable line that could become more onerous for people living with HIV over time. This also takes the drama out of the small "blip" in viral load, at least in terms of criminal responsibility. 

Another positive aspect is to be found in the DC decision. While the definition of the "realistic possibility of transmission of HIV" test is outlined in the Mabior decision, the court in DC has a few words to say about the proof of the absence of a condom. The only evidence presented about the use of a condom came from the accused and the complainant, who contradicted each other and who were both characterized as "not credible" by the trial judge. He had to find another source of corroborating evidence to draw a conclusion. He found that by speculating that a brief note in DC's medical file from seven years earlier, when she had asked what would happen if a condom broke, was proof that she had lied to her doctor and that no condom had been worn. The Supreme Court said that this "speculative edifice the trial judge built" is not evidence that no condom was used. That might have some impact on the elements of future accusations going forward, but it might also be so specific to this case that it will have none at all. 

On the other hand… 

We were really hoping for a judgment that would say that condom use OR undetectable viral load would relieve a person of the duty to disclose, but we got an AND. This might have been the Supreme Court being especially cautious about transmission and dramatic about the impact of HIV even in 2012. I'm not one to lack caution or to underestimate the impact of HIV, even today, but I do tend to see this as a "belt and suspenders" situation (see my article on that here). All of which to say that I do still think the burden on people with HIV is too high, and likely because of the fears of the common person about HIV. When some news organizations announced this from the other perspective, focusing on the situations where disclosure is not required, and their readers seem generally outraged, which is scary and depressing for me. 

This has to be a little worrisome for public health authorities and those engaged in prevention activities, too. After 30 years of "use a condom" messaging. the Supreme Court seems to be saying that condoms alone are not enough. While I think, as noted above, that this is overly cautious, I wonder what the prevention impact will be. 

The court does not take judicial notice of the effectiveness of condoms. Taking judicial notice of something means that it is a fact so notoriously recognized that it does not need to be proven in court. They do recognize that the virus does not pass through latex, but accept the expert testimony from the Mabior trial that human error and breakage reduce the rate of effectiveness to about 80%. This could be difficult to have to prove every time and the high assessment of the human and product failure probably led to the double requirement. 

Another big danger that I can see is the possible evolution of the treatment as prevention approach toward obligatory treatment. For people who are not on treatment because their current CD4 levels do not indicate treatment for their own health according to the guidelines, low viral load as defined by the Supreme Court is not necessarily a reality. They will not be relieved of the obligation to disclose by using a condom, so they will either have to disclose their status or start taking treatment early and use a condom. 

What I didn't see anywhere in the judgment was any responsibility on the part of the partner of the person living with HIV. Not that I expected it: the criminal law doesn't really have room for the concept of "shared responsibility" that has long been the message of public health and which is well-known in civil law. No, the whole responsibility for HIV prevention is again falling on the shoulders of people living with HIV and I guess everyone else will be protected by the criminal law and not their own sexual habits. 

I'm sure there are people who will read this who will wonder what is the big deal with disclosure. I have gone on too long here already, so I promise to share my thoughts on disclosure in a future post. 

The Supreme Court drew a clearer line for us. It just wasn't where we thought it ought to be.