This interview was originally published on PositiveLite.com. January 25, 2012.

In part one of this in-depth interview with PositiveLite.com editor Bob Leahy, Dr. Julio Montaner, director of the B.C. Centre for Excellence in HIV/AIDS, discussed his disappointment with Canada’s uptake of treatment as prevention despite the strategy being lauded elsewhere, including in Time, Science, the USA and China. (Read part one here. In  part two, Bob explores some of the objections raised to treatment as prevention as well as the future of PreP and the issues we grapple with in an era where an  undetectable viral load is commonplace.

Staring treatment early

In the early part of the interview, Dr. Julio Montaner made an impassioned case for Canada to come on side with the kind of treatment as prevention strategies that have made British Columbia’s success envied world-wide, but not in Canada.

But why are some community members wary?  One often-voiced question is that if treatment commences on diagnosis rather than waiting until CD 4 numbers reach a certain level, isn’t exposure to any known and unknown toxicities in those drugs longer too?

Montaner doesn’t pause when I pose this question to him.  “Look, it’s very simple,” he says. “There is no doubt that antiretroviral therapies have improved dramatically.  They are simpler, safer and better tolerated. No doubt about it.  Are they perfect? No they are not. Nobody is perfect and HAART isn’t perfect either.

“However, if we are having a discussion here on whether starting treatment immediately or on a deferred basis, the gap between those two decisions is somewhere in the order of months to a couple of years. It varies from person to person but when we’ve done studies, the rate of CD4 decline in an untreated person is somewhere between 60 and 120 cells per year. If somebody today says ‘no, I’m going to wait,’ what I say is ‘sure, you can defer antiretroviral therapy, no problem, we are not forcing anybody to start treatment.’ What we are saying is let’s have a discussion.

“Having said that, for those that want to delay it, I have to remind them that we are talking about a short term delay, may be for a month or a few years, at the most. However, they need to consider that once you start treatment you are going to be on it for three to five decades. In British Columbia – based on the 2010 International AIDS Society-USA Guidelines – we say that most people who are HIV positive should be offered antiretroviral therapy. The only people who really have a reason not to take treatment are people who have undetectable or really low viral load with a really high-normal CD4 count.  But other than that, most people need to at least consider starting HAART.

“The problem today,” he adds, “is that most people that are not on treatment, it’s not because they have made the decision not to be on treatment, it’s because they don’t even know they are HIV-positive.”

“If you are asking me, I’m very comfortable that HAART is at least as protective – or more – than condoms.”

Montaner, like many others in the community, has been criticising the criminalization of HIV lately. Times have changed, Dr Montaner said in a recent canada.com interview. "We can't have a discourse that, on one hand. says things are different now — we can identify HIV, we can treat it, you can have a near normal life — and, on the other hand, says if you do not disclose we’ll put you in jail."

And it’s true. The reality of undetectable viral load and the “almost zero risk” of HIV transmission, albeit with important caveats, are a key argument now in the case against criminalization. But why haven’t we seen any changes in prevention messaging aimed at HIV-positive people?  It looks very much like business as usual, in fact. I asked Montaner why this discrepancy?

”Well, I think that the data is very definitive at least in the case of sero-discordant heterosexual couples where we have the best available data, as a result of the randomized controlled trial reported on last year  where we know that, after you become (viral-load) suppressed, in the absence of other co-morbidities – STIs and the like – the likelihood of transmission is very, very, very low indeed. Now, the problem here is that people very often want to know is there a risk or isn’t there a risk? And that’s a different discussion. We cannot prove the absence of risk.”

Montaner adds: “So I’m perfectly comfortable to tell people that if you want to go forward and have, for example, unprotected sex while you are being protected by antiretroviral therapy, that is perfectly acceptable. On the other hand, you need to know that in the process of doing that, if there was a breakdown in adherence for example, you put yourself at risk.  As long as you are willing and able to live with that kind of small risk, I’m perfectly happy to live with it.”

“Some people, they want to be 100% sure that there is no risk. So they are not very comfortable with this kind of approach. What I usually tell people is look, if you think wearing condoms is the way to go and you are happy to advise and counsel people that condoms are as good as safe sex, I think you should be fully comfortable with advising fully suppressed individuals on HAART that they are as well protected as when using condoms, if not better protected.  If they are concerned and want to use HAART and condoms, that would be even more protective. But that’s a judgement that fully informed couples should make.”

“If you are asking me,” Montaner says, “I’m very comfortable that properly used HAART is at least as protective – or more –than condoms.”

Wow.  He said it!  This is good stuff, I’m thinking.  Few HIV educators will even come close to admitting this.

Prep – and return on investment

Moving on, I wanted to talk about pre-exposure prophylaxis, or PreP.  It’s been bugging me.  I ask Montaner if he thinks we should be embracing PreP and, in effect, addressing the uninfected, or putting our resources in reducing the viral load of those already infected?  Here’s what he said.

“In British Columbia we have made a decision at this time in favor of focusing our efforts and resources on treatment as prevention. By finding people who are HIV-infected, and facilitating and supporting their access to treatment we are reducing morbidity, mortality and transmission. Why? Because treatment as prevention has a multiple-level benefit when it comes to the return on investment. Number one – it’s good for the individual. It reduces morbidity and mortality, and it restores quality of life. In addition to that it virtually stops HIV transmission.  So the return on investment is dramatically superior to anything else in terms of antiretroviral drug-based preventive interventions.”

“Now, the other aspect of this is that PreP has had mixed results in clinical trials. It may work better in some settings than others. The adherence issue is a concern. Furthermore, what happens when you fail PreP and you become infected? Are you going to be resistant to the drugs to start with?……

“The other thing is that in British Columbia today I have an estimated 12,000 people who are HIV positive. Roughly 6,000 of them are on HAART already, and another 5,000 to 6,000 of them are likely to need HAART in the near future. If we are able to engage most of them on HAART, most of the job is done and we would have successfully addressed most of the HIV and AIDS related morbidity and mortality as well as most of the HIV transmission in the province. Now, if you intend to use PreP, things are a lot more fluid. This is specially the case when it comes to identifying the partners (or the potential partners) of the 12,000 HIV infected people in BC, or perhaps more relevant the partners of the 6,000 HIV infected people in BC who are not yet in treatment. These could be 3,000, 6,000, 12,000 or 100,000 and it may change from one year to the next. So as a public health strategy, based on these considerations, we feel that investing in treatment as prevention has a much greater return on investment, both at the individual and the public health level.

“However, it could well be,” Montaner adds, “that after the data gets a bit more clear you may be able to identify particular individuals who are at very high risk – maybe a partner of an HIV-infected individual who cannot or will not take antiretroviral therapy. In that case, PreP may be the best way to go. But we don’t really have all of the data. We are not ready to take that step. At this time we think that PreP is an interesting proposition but the time for it, at least in BC, has not yet come.”

The final solution

It’s almost time to wind up. Montaner has been generous with his time. It’s late on a Friday afternoon and I don’t want to push him. But one big question on my mind remains: Is treatment as prevention of itself capable of ending the epidemic?  And what’s the role of other prevention methods?

Montaner answers: “Look, mathematical modelling suggests that treatment as prevention in utopian and hypothetical scenarios could actually lend itself to stopping the epidemic. From Day One when I presented our model in Toronto in 2006 I said loud and clear that I personally don’t believe this is a realistic proposition. I think treatment as prevention can drive the epidemic from a raging epidemic as we had in British Columbia 20 years ago, to a more controllable endemic situation as we are seeing today. We have gone from approximately 900 new cases per year in the early nineties to the current 301 cases identified in 2010. The trend continues to be downwards so we still have yet to see how far down we can push this situation. And that’s where my work is focussed on.”

“We are going to need everything else if we are to truly eradicate the disease. You know, the reality is that other diseases – whether it’s polio or TB – have shown us that even when you have all the tools it may be a very difficult and long term proposition to truly eradicate a condition. Now, having said that, we need to continue to research for a vaccine, we need to continue to research for a cure. Those are going to be essential parts of the final strategy to eradicate HIV and AIDS. But waiting for this to happen is short-sighted, because no matter where we are at, if and when those two (the cure and the vaccine) become available, if we have deployed treatment as prevention aggressively – aggressively in a fully ethically, morally sanctioned way, don’t get me wrong – but if we do this properly by the time we get there, finishing the job is going to be a lot easier. If we wait, and we are doing nothing until then, we will have to contain an epidemic that will be three, five or 10 times greater. Stopping the epidemic at that time is going to be impossible.”

“One more thing, it is also very clear since a long time ago that HIV is a disease with very strong social-cultural-economic determinants. And at the end of the day if we cannot overcome the stigma and discrimination at a systemic level, at the institutional level, at the political level, we are not going to be able to conquer it. Unfortunately, we have a lot to do in this respect in Canada, particularly at the level of the Federal Government. And this, I think is reprehensible. At the end of the day that’s where my energy comes from.”

Bob Leahy:  Hello Rupert.  Thank you for talking to PositivelIte.com. Rupert, I really was fascinated by your recent webinar, one of the ACT community forum series.  (If people want to look at it, and I recommend you do, go here  and skip to slide 150). You gave it the title “I’m on antivirals and undetectable: what about safe sex?”  Tell us why you chose this title.

Dr. Rupet Kaul: Four of us were speaking in the ACT session, and between us we touched on several issues that people face around starting HIV treatment – when to start treatment, whether treatment can eradicate the virus, what treatment means in terms of HIV transmission, etc. Since the talk was a day or two after the Supreme Court decision, which had highlighted issues regarding antivirals and transmission, I thought this was a good time to explain some of the science that was considered in making that decision.

I like how, right at the start, you make a distinction between “legally” safe sex (having a low viral load, using a condom) and “safe” from a practical point of view. I want to return to that issue in a minute, but do you think there’s room for confusion here?

There is tremendous room for confusion here: when it comes to sex and the risk of HIV transmission, “safe” means very different things to different people. There is no dictionary definition that says a risk less than X is “safe” and a risk more than X is not. The fact that “safe” is subjective and open to interpretation is the fundamental problem facing the community and, of course, the legal system. In some ways the job of a researcher like me is much easier – we know what we know, we know what we don’t know, and we communicate those things as best we can to the relevant stakeholders. Taking that information and converting it into legal guidelines, or into the reality of a person’s sex life, is a much trickier thing.

OK. I understand. I’d like to look at HPTN 052. Now many of us will be familiar with this study – CATIE calls a it a  game-changer, but  for those who aren’t, can you give us those findings in a nutshell?

Sure. This was a great study that provided us with some really clear and incontrovertible numbers, although it still leaves ample room for debate on some issues. HPTN 052 was a clinical trial performed in four continents, with a slight majority of participants from Africa. The study enrolled heterosexual HIV-infected men and women who had a fairly high CD4 count, so that under the current clinical care guidelines they would not need to start treatment for a while, and these people all had a stable, HIV-uninfected sexual partner (usually a spouse). In addition to frequent couples counselling about how to reduce HIV transmission, participants were randomly assigned to either start antivirals early or to be monitored for a while: the “delayed antivirals” group only started meds if their CD4 count started to fall. Whenever a person became HIV infected the virus was checked to make sure that it came from their partner in the trial, and not from a different partner outside the marriage. The first analysis was done after 28 people had become HIV infected. The team saw that only 1/28 of these people had a partner in the “early antivirals” group, while 27/28 had a partner in the “delayed antivirals” group. Based on this difference, they concluded that early antivirals made transmission 96% less likely, and for ethical reasons they stopped the trial early so that all participants could be offered early antivirals. The one person who became infected in the “early antivirals” group did so early, within the first month of being on treatment. This is similar to an earlier observational study that showed a 92% reduction [Donnell, Lancet 2010], again with only one transmission event within 3 months of starting antivirals. There was also an earlier study that “pooled” information from several small observational studies and showed a 92% reduction in transmission [Attia, AIDS 2009]: this was based on 5 transmissions from people on antivirals in over 5,000 couples, although the timing in relation to starting treatment was not known.

Now that 96% reduction in the risk of transmission is highly significant. I’m curious though why it’s only 96%.  I mean, there was only one infection in the group on treatment and that person had only just started on treatment before  his female partner was infected.  In those circumstances, viral suppression seems unlikely, doesn’t it? I guess I’m suggesting that if the research was more rigorous and eliminated people who’d just started treatment, we could well have seen a 100% reduction in transmissions!

There are two parts to my answer here. First, it is true that if we exclude that person who transmitted HIV very close to the time that he started antivirals, there would be no cases in that arm of the trial. It might seem logical to exclude that person from the analysis, but that is not how the study was set up. Changing the numbers afterwards to exclude people based on things like that is a real “no no” in research: you have to present the results the way you said you would before you started the trial, and then people like us can assess these kind of nuances for ourselves.

Let’s say we do decide to exclude that person, though. An important thing that we need to ask is whether, since the first 27 transmissions happened in the “delayed antivirals” group, that means that no transmissions could happen even if we waited until many more people had been infected (which the trial did not do, because it would have been unethical). What I mean is, the trial was set up to show whether antivirals can reduce HIV transmission, and it absolutely proved that they can. What it was not set up to show was whether transmission is impossible when you are taking antivirals. An easy analogy is tossing a coin. If you get 27 “heads” in a row then you have proved that heads are much more likely, and we would all be happy to bet on the next result being “heads”. But does that mean that it is impossible to get tails with this coin? That is a different question, and you would need to toss it a lot more times to prove that. The good news is that, even though early antivirals have now been offered to all participants, the HPTN 052 study will continue to follow all couples until 2015. This will allow the study to give us a much more precise measure of exactly how (un)likely transmission is to occur when somebody is taking antivirals.

It’s been said many times over that HPTN 052 results really couldn’t be extrapolated to gay/bi men because this was a study of heterosexual couples and that the risk of anal sex just isn’t comparable with that of vaginal sex.  But this raises two questions in my mind. Firstly, heterosexual couples have anal sex too. HPTN 052 must surely have included (straight) couples who were having anal sex and the risk reduction was still 96%. So I’m not getting why this study, we are repeatedly told, doesn’t reflect the rigours of anal sex, the nature of the rectum lining, etc. etc., so it means no good news for gay men. Can you comment on that?

Plenty of heterosexual couples have anal sex. It is reported by couples a lot less commonly in Africa, but even if you think those reports may not be accurate, it’s pretty easy to show that anal sex was probably not a big factor in HIV transmissions within HPTN 052. We know that all the 28 HIV transmissions happened between a woman and man within the couples, because they matched the virus to that of the infected partner. And we know that when people have anal sex, the receptive partner is at a much higher risk than the insertive partner (about ten times more). So, since the receptive partner in a heterosexual couple is always the woman, if anal sex was common we would expect to see more transmission from men to women in the study. However, it was actually the other way round, with slightly more transmission from women to men. This says to me that there was probably not much transmission through anal sex in the HPTN 052 study.

OK. Got it. My second question. We know that the risk of insertive anal sex is more or less the same as insertive vaginal sex.  It’s in the one in 500 to one in 1,000 range, without antiretrovirals or condoms complicating the picture.  So . . . for many gay men – those who practice only insertive sex, the HPTN 052 results are extremely relevant, no?  Why would we suggest those results  don’t  have applicability to gay men, period?

The risks that you are talking about are right on: the risk of transmission during unprotected anal sex is about 1/20 – 1/300 for receptive anal sex, and 1/500 – 1/1000 or so for insertive anal sex. Although we don’t have specific data about anal sex from the studies to date, my best guess is that if you are an HIV uninfected man who only practices insertive anal sex (studies say that is about 10% or less of gay men) then if your partner goes on antivirals this will have the same protective benefit for you as was seen in the HPTN 052 study. 

However, in terms of the recent Supreme Court “prescription” about disclosure, remember that for a gay man with HIV who only practices insertive anal sex, this means that (with him) all his partners are only practicing receptive anal sex. Receptive anal sex is riskier in general, and is also where we have less information about the protective effect of antivirals. My best guess is that we would probably see the same kind of reduction – roughly twenty-fold less, or a risk of 1/2000 or so – but different people have theoretical reasons about why the protection might be less and why it might be more. Again, the good news is that at least two observational studies in Europe and Australia are enrolling HIV-discordant male-male couples to specifically assess the effect of antivirals on transmission in gay men.

Can we try to pin this down? If someone is on antiretrovirals, say for two years, virus fully suppressed and without STI’s, the risk of transmission through insertive anal sex is about one in what range?

That is a good question that nobody has a precise answer to, yet. We hope that it will come from the several studies that are underway and that I mentioned earlier. Specifically, it will be interesting to see whether the amount of reduction is any lower than the 96% reduction seen in HPTN 052.

And that risk is sufficient for ASOs to suggest that condoms must always be used? (I’m not talking here from a legal perspective.)

I hope that ASOs consider the legal perspective in the advice that they give out! However, what level of risk is “enough risk” for ASOs or Supreme Courts to make recommendations one way or another is the fundamental question here. It is important to realize that this is not a “science question” – instead, this is a very subjective question that has many different answers for many different people.

Right, but I think people’s approach to risk is different from HIV prevention folk. Prevention people – and even the Supreme Court for that matter – seem to glom on to exceptions to the rule. In other words, they have to think about what is the absolute worst that can happen. But we don’t usually think like that. That’s why we cross the road. We tend to think what is the likely outcome of any risk behaviour. And that gap between them (the “exceptionalists”) and us (the “realists”) is difficult to bridge, no?

Sometimes it seems like there is a “them” and an “us” in the debate, but I am not sure that is really the case. In fact, there is a tremendous spectrum across people in their answer to the most basic question at issue here – which is “how much risk is too much risk?” No matter what the numbers say – and hopefully we have done a good job of going through the available numbers for your readers – this is where the science falls short.

I think this is really well illustrated by an anecdote that I told in the question period after that ACT forum. I often see people in my clinical practice who may have been exposed to HIV in one setting or another – sex, needle stick injury, whatever. We talk about what happened, come up with a “best guess” as to the risk of transmission, and then talk about whether a short course of antiviral medications is indicated to reduce that risk. In one case we arrived at a risk of 1/100 of acquiring HIV, and this person said that this risk was much lower than they had expected, and that they did not think it was significant enough to take antivirals for month. On the other hand, in another case we arrived at a number of 1/1,000,000 (one in a million), and the person was adamant that this was very significant, and that they wanted to take the antivirals even though they were not covered and it would cost them well over $1,000 out of pocket. To my mind, there can be no clearer indication that getting everybody to agree on what constitutes a “significant” risk of HIV transmission is just an impossible job.

I want to talk about semen now, Rupert.  Because you’ve said that viral load in the semen is a key predictor of HIV transmission.  I think we’ve led people to believe, and I talked about it here,  that if you have an undetectable viral load in the blood this means nothing when it comes to what’s in your semen.  But it’s not that simple, is it. We do have a good idea of the risk.

Both the level of HIV in the blood and the level of HIV in the semen are each predictors of transmission risk – and for each one, a higher level means a higher risk of transmission. There is no validated “threshold level” for semen HIV and transmission, especially since semen virus levels go up and down much more than blood viral levels, but we think that a level over 5,000 RNA copies/ml is most relevant in terms of transmission risk. Our own studies have followed men for six months around when they start antivirals, with semen and blood samples collected every month. What we saw was that virus levels in the blood and semen generally did the same thing, and that was to become undetectable, although virus could occasionally be found in semen despite a person being undetectable in blood. In fact, the reduction in the frequency of “high level” semen virus was 92%, which is very similar to the 92-96% reduction in actual HIV transmission that was seen in the clinical studies. We have done much less work in men who have been taking antivirals for longer periods, but it seems that the frequency of semen virus gets less and less the longer that you have been on treatment.

OK, let me ask you this. I’m undetectable. No STIs. What are the chances that I have virus in my semen AND it’s capable of infecting someone else? (I think you call this a high level of virus, i.e. over 5,000 copies.)

There are two caveats here. First, we don’t know as much about semen levels in men who have been on treatment for a long time. Second, it’s important to say that we cannot be certain how capable any semen sample is of infecting another person “in the real world”. What we can say is that, after relatively short term antiviral treatment in men with no STI and an undetectable blood viral load, we saw high levels of virus at roughly one in twenty-five visits. Preliminary work suggests that after a longer duration of antiviral treatment, the chance of finding virus in semen is likely to be lower than this.

And that risk would change much if I had an STI?

We know that when untreated men in Malawi had gonorrhea, the level of HIV in their semen went up about 8-fold, and that it came down again after the gonorrhea was treated. There are not many studies looking at the impact of STIs on HIV levels in the semen of men on antivirals and who are undetectable in blood. However, one recent study did show that three-quarters of such men with an active STI had detectable virus in semen (although numbers were small: this was six men out of eight), and concern over such increases is the reason for the lack of STIs to be explicitly mentioned in the Supreme Court decision and the prior “Swiss Guidelines”. Also, it is worth pointing out that STIs are generally infrequent within married couples, and so these low rates might have contributed to the success of the HPTN 052 study.

So it depends too in part on how long a person is on effective treatment whether it’s likely that virus will be found in the semen?  Longer than two years on treatment and you haven’t found any?

Our preliminary studies do show that the chance of finding virus in semen is lower after longer term treatment, but so far we have enrolled less than twenty men in those studies and so we can’t say how much lower with much accuracy.

So this is suggesting to me some very low risk scenarios here.  I’m thinking of a poz man on antiretrovirals for two years, adherent say, whose blood viral load is undetectable, who has no STIs, who is engaging in unprotected insertive anal sex? Now is it heresy to suggest that may be very low risk?

I don’t think that anybody would argue that the risk of transmission will be much lower than if that poz man was not on antivirals, and that is a great thing from a public health perspective. However, there are several things that we don’t know in this scenario, and to my mind two are the most important. The first is exactly how much lower the risk will be, compared to the roughly 1/100 risk without antivirals, and the second is how much lower it would need to be for his partner to agree. As I said earlier, my guess is that the risk without condoms will fall by twenty-fold or more, that is, to similar degree to the fall in the HPTN 052 study. If it did, that would bring the risk down from 1/100 to 1/2000, which is within the range of risk for unprotected vaginal sex without antivirals. Is that low enough that it would be deemed “insignificant risk”?  Would 1/20,000 be “insignificant risk”? I don’t know the answer, and my guess is that different people will give you different answers. The big thing that came out of the Supreme Court decision was a concrete ruling on what does constitute “insignificant risk” – and that was the risk of transmission if a person is on antivirals, has no STI and also uses a condom.

So back to condoms. You end your presentation with a slide that says “still need to recommend condoms after Supreme Court decision” but then you qualify it verbally that the need is from a legal perspective, and that in theory the risk is very low. Would you lump gay/bi men in with that statement because traditionally it’s been a “we don’t know” answer when it comes to them.

I have done my best to talk about the probability of transmission in different scenarios without giving my opinion on what risk is “significant” and what is “insignificant”. That is because, once people are informed about what the actual risks are, what constitutes “significant” becomes a personal thing and my opinion is no more meaningful than anybody else’s. However, now that the Supreme Court has ruled on the matter, I think that we all have a responsibility to inform the community about the legal perspective on this.

Bob: Right, I think I'm hearing risk is very subjective. I agree. But then we are told what is low risk/high risk all the time.  I'm thinking, for instance, about the CAS guidelines  (I know they are outdated, and are being revised, but we still use them), or more recent attempts to describe the risk of various sexual acts like HIM's. Aren't all those tools very subjective too? For instance, both those tools I've mentioned call acts "high risk" where there is A risk of transmission and where transmission has occured (at least once, I believe). By that standard, crossing the road is high risk, because accidents have occurred. Riding on an airplane is high risk because airplanes have crashed. Don't the prevention community's "low-/high-type" risk parameters reflect an entirely different mind set to that of the average person to whom they are addressed?

Rupert: Of course, when you look at those guides they are very subjective, in that they simply list things as “very low risk”, “high risk”, and so on without assigning an actual number to that risk. That allows people to bring their pre-conceived notions of risk to the table, and to make assumptions that may or may not be accurate.

One of the interesting things about doing basic and clinical research on HIV transmission is that people from across the spectrum of the prevention community often sit down and talk with me about the latest studies, and so I see firsthand how diverse opinions can be when it comes to preconceptions of risk. While it’s a bit off topic, I’d like to take this opportunity to make the observation that people at the opposite ends of that spectrum tend not to communicate with each other very much. While this topic naturally engenders strong and emotional responses, we really need to have that communication happen if the prevention community – and anybody reading this is part of that community – is going to be able to digest what the science has to say in a balanced way and then move the field forward.

OK, Rupert. That's a good place to end. You’ve been very generous with your answers, and I really appreciate your frankness - and patience. I’ve learned a lot from you. Thank you so much for talking to PositiveLite.com.

Dr. Rupert Kaul is a clinician-scientist based at the University of Toronto and has a clinical HIV practice at the Immunodeficiency Clinic, University Health Network.  His research interests include: (1) how local factors in the genital tract, either immune factors or other co-infections, may increase HIV transmission; (2) the interactions between HIV and herpes simplex virus type 2 (genital herpes); (3) the nature of immune responses that provide protection against HIV acquisition and/or progression; and (4) the effects of microbicides in clinical testing on the immunology of the genital tract. This work is made possible by the help of research participants from Toronto and Kenya.

This interview was originally published on PositiveLite.com January 18, 2012.

Dr Julio Montaner, head of the British Columbia Centre for Excellence in HIV/AIDS  is proud of what he and his Province have achieved in reducing HIV transmission rates through treatment as prevention strategies. It’s a trend he doesn’t see elsewhere in Canada, not that he hasn’t tried to make it happen.

“The public needs to get incensed” he said to me last week. “I‘ve been in the White House three times in the last three years. I‘ve seen Obama, I‘ve seen Clinton.  On December 1 last year the US said treatment as prevention is the way forward and they are going to be doing it domestically and internationally. And you know, I‘m honoured by it.  But I‘m frustrated that my own country keeps on telling me - well, we are not so sure that we agree. Every time that I write to them I get a form letter saying thank you, we acknowledge we have received your correspondence. The Honourable Leona Aglukkaq (Minister of Health) doesn’t have time on her calendar, I wrote to Michaelle Jean, when she was the  Governor-General she didn’t answer, I wrote to the Prime Minister – same answer."

A mixture of science and ethics

Listening to Dr. Julio Montaner talk is a revelation. The world-renowned head of the BCCFE speaks with a thick South American accent, a product of his Argentinian upbringing. He talks a lot too – ask him about HIV and he`s off and running, scarcely stopping for breath. He reels out history, facts and figures about a topic about which he clearly feels deeply. But here’s something else - he talks social justice too. In fact his work is rooted in it, he says. Combine the two sides of his passion – the science and the morality of it all  - and it`s powerful stuff.  He is probably the most driven person I have ever spoken to.

I talked to Dr. Montaner last week in a recorded 40-minute interview, the same week he publically chastised Canada in both the Winnipeg Free Press and the Globe and Mail.  In my two-part interview, excerpts of which are featured here, he is even more outspoken, this time naming names and pointing fingers.  In fact he is one angry man.

Here’s what he said to me about his crusade to have treatment as prevention adopted Canada-wide. “I have talked to every public health officer for every province in this country in the last couple of years .I have made trips to other jurisdictions including Ontario and talked to the Ministry of Health. I have talked to my colleagues, community and the like.  And everybody is always asking me  - are you sure?  And I say listen to me clearly. What I am saying is that if we make an active effort to bring treatment to the people they do better and public health will do better."

I cannot get five minutes audience with the federal government . .

"I’ve written to Tony Clement when he was the Minister of Health . . . on a yearly basis and the Prime Minister and I’m saying look  - Canada has this amazing made-in-Canada strategy that has now been recognized by Science journal as the number one scientific breakthrough for 2011. The New York Times has written about it.  You name it.  It’s all over the place. And I cannot get five minutes audience with the federal government to say – you know how come it‘s so easy to  have a national strategy about childhood obesity, prostate cancer, breast cancer – and AIDS, we have a made-in-Canada strategy that can fix it that cannot be sorted out.”

And the New York Times HAS written about it. So has the Globe and Mail (BC Strategy Hailed Worldwide but not in Canada”).  Science magazine named HIV "treatment as prevention" the number one scientific breakthrough of the year. Time magazine included treatment as prevention in its top ten medical breakthroughs of the year.

“Tony Clement had no time for me.”

Montaner has been on the treatment as prevention crusade for a long time, ever since he got wind of the possibilities in 1996 when HAART started to produce good results in clinical trials. “We started to speculate” he said “that HAART had a secondary and unintended benefit of decreasing the number of HIV cases in the province.  We couldn’t prove it. But we said wow!  Look at what’s happening here!  Despite the case that syphilis cases are going up, HIV cases are going down in a way that is proportional to the number of people treated with ART. And the world said - slow down. You haven’t proven anything and we said OK, let me look at it again.  And we did studies and epidemiological studies and by 2006, we thought that the data was sufficiently mature to go forward and say  - hello, we now have enough data to make a recommendation and we did that in a plenary presentation at the 2006 International Conference in Toronto.  I actually brought it to the attention of Tony Clement who was Minister of Heath at the time - who had no time for me.”

Montaner is  getting more and more impassioned now as he speaks. “We entered in to a debate with the wider community saying that this is what we need to do. And other constituencies out there, for whatever reason, had difficulty in understanding and they said you haven’t proven that treatment as prevention works.  I said - wait a minute, we have enough proof to say that if we treat people who need treatment in a facilitated fashion we decrease morbidity and mortality and transmission.”

“We went further; we did economic analysis, we did everything you want. The province of British Columbia said yes, we are going to support you. A couple of years ago they said  - Julio, we are going to give you additional resources to engage hard-to-reach  populations who need treatment and in doing so they are going to do better. And we will have less infections.”

Seek and treat

The additional resources resulted in the province undertaking high profile seek and treat testing campaigns, under Montaner’s auspices, which both seek out the most at risk and also normalize HIV testing for all sexually active adults who consent to it, as part of their regular medical check-ups. Combined with offering no-cost treatment immediately on diagnosis, it's a different approach that distinguishes BC from the rest of Canada.  PositiveLIte.com reported on B.C's recent testing campaign,  “It’s Different Now”, here.

How has the province fared?  The British Columbia Centre for Excellence reports that B.C. is the only Canadian province seeing a consistent decline in new cases of HIV. The 2010 published results show a reduction of nearly 65 per cent in new HIV diagnoses in B.C. to 301 cases, down from the 850 cases diagnosed annually prior to 1996. In other Canadian provinces, HIV and AIDS have not declined or have actually increased, in some cases significantly.

I asked Dr Montaner why his provincial counterparts aren’t biting.  He speaks angrily. ”In 1996 there was a sense of urgency. Today there is no sense of urgency.  The community doesn‘t feel the urgency, politicians don’t feel the urgency – no one is putting pressure on anybody. It‘s like – things are OK  If I show you the rates of new infections across the country, you will see that British Columbia has had a roughly 60% decrease in new infections and you will see that Ontario and the rest of the country has shown NO significant decrease over time.  And when I show that to my colleagues they say well this is OK, because this is stable.  I say, well that‘s unacceptable!”

Montaner minces no words on this topic.  “My job as head of the HIV program in my province is to decrease morbidity and mortality and transmission.  And if I am not doing that - you know what?  They should get rid of me.”

A Draconian perversion

Montaner points to inequalities in access to treatment as something else that riles him. “The medical system in British Columbia has what I call a Draconian Perversion” he says. “It has a little bit of a Machiavellian portion. You have HIV treatment available in British Columbia at no cost, no down payment, nothing – which is different to other jurisdictions across the country. But you have to be able to find your way to me, or any other doctor. And so what happens is that the system is perverse – that's why I called it a Draconian perversion – in the sense that if you don‘t come and get it, we won‘t come and give it to you. …..A person who needs treatment may not access treatment for reasons of mental illness, poverty, social or economic status, education, their addiction or whatever and what happens that persons health suffers and that person, for the time they are untreated, is much more likely to be spreading HIV.”

“And so what I have been able to discuss with my government successfully is that -  look  - you invest a little bit more and help get access to these people, work with me and help them, if they so wish, to gain access to treatment and by doing so we are doing the right thing, the humane thing, the compassionate thing but at the same time we are investing in health for society."

Across Canada, he sees complacency in the treatment of the marginalized sectors who are hardest hit by the epidemic. “What is happening here is that there is a compartmentalization of the epidemic by which it is us and them, and as soon as it‘s them, we don‘t care. And that‘s unacceptable. This is not the way we operate. The Canada that I know is characterized by the fact that every individual in this society has an equal value and we are eager to protect and help and assist each person if they so wish. The problem is somehow, under this new philosophy, it’s us and them and we are happy with that. And that’s unacceptable."

Don’t call us, we’ll call you.

I pressed him to tell me what he has done to convince his provincial counterparts that treatment as prevention works. “Listen" he says. "The province of British Columbia has been stellar in support of this initiative. The other provinces -  all I can do is go, give a talk, show my data and say guys, if you need any help, let me know.  So they say “don‘t call us we‘ll call you!“

He’s concerned too about the lack of a Canada-wide testing strategy.  “Let‘s have a strategy” he says. "Year after year (it’s reported that) approximately 25% of people in this country infected with HIV are unaware of their infection. Tell me, where is the strategy to increase HIV testing in this country? Except for British Columbia there IS no strategy".

I asked him about Ontario’ testing record and their infection rates. Here’s what he says. “The thing is its “stable”. Like "stable” is good. "Stable" is unacceptable. When I talk to people I get the sense that no, no, no we don’t want to do more testing because it costs more money. And that’s crazy. You know there is no more better investment than doing more testing.  It’s peanuts in comparison to the amount of cases saved by identifying those patients and being able to engage them in discussion about the virtues of accessing treatment at an earlier stage,"

"To have the knowledge, much of which has been produced here, to know how to treat, control and stop this epidemic and not implement it because of lack of political will is unacceptable and reprehensible and I’m prepared to do whatever I can to change that. I’m not giving up and I’m convinced that the day will come when we will prevail.”

In Part Two, Bob Leahy talks to Dr. Montaner about the objections raised to treatment as prevention and asks is money spent on PreP well spent, does undetectable viral load mean condom-free sex and can treatment as prevention end the epidemic.

First Photo credit: The Canadian Press/Darryl Dyck

You can read Part One of Ed's story here. 

Monday morning, October 22^nd

The grey mist of the last two days here in Kiev disappears and the sun shines bright. The screening of “We Were Here” isn’t til tomorrow night; I have most of the day free and decide to take a city bus tour. Everywhere posters announce that Marilyn Manson, Seal, and the next Twilight movie are ‘Coming Soon.’ The tour guide describes the great battle of Kiev in 1941, how when the city fell, 600,000 soldiers were marched out, most never to return. There was a large Jewish neighborhood here then as well, 200,000 inhabitants. When the Nazis left two years later, 125,000 had been shot and killed. My spirits start to sink, feeling that the bus tour may not have been the best thing to do today. I find myself thinking of the screening tomorrow, worrying about whether the homophobic journalist from yesterday will be there. I reflect too on the eloquence and courage of the queer speakers on yesterday’s panel, how committed they are to fight the oppression they experience in their own country, how determined to stand up against the pending legislation that will make any positive images of gay people illegal. 

The tour ends where it began, at the Film Festival headquarters. I’m supposed to meet with the people who are sponsoring tomorrow’s screening of “We Were Here.” As I wait for the taxi to take me to their office, I see the man who sat next to me on yesterday’s panel. I call him over and ask about the journalist who was so disruptive. He says he’s one of Kiev’s most influential film critics, is a bright and educated man and, for some reason, when the issue of gay rights comes up, he goes ‘crazy.’ I ask him if he thinks this critic will be at tomorrow’s screening and he says it’s possible. My taxi arrives and I’m taken to the offices of FULCRUM, a social service organization that serves Ukranian gay men. I meet the executive director, a young man named Bogdan, and three of his colleagues. There’s also a wonderful woman who will provide translation for our meeting today. The translator takes me on a tour of the offices where I see many beautiful paintings of gay men leaning against the walls. She tells me that the artist is afraid to keep them where he lives and has donated them to the agency. She says they're unsure if they will be able to display them or not. 

We all sit down and talk about tomorrow’s screening. (The interpreter translates the following discussion.) They’ve decided to sponsor “We Were Here” and bring me to Kiev based only on what they’ve been able to find in print about the film. None of them have seen it, or read or speak English. I can hardly believe it and am incredibly moved by their trust in the film and in me. They tell me the situation for Ukranian MSMs (men who have sex with men) is very dire and even moreso for those who are HIV+. The stigma against gays is immense and when someone becomes infected, many in the gay community turn away from them as well. They then become isolated, some afraid to seek treatment, some dying alone. (I am crying as I write this to you in my hotel room because I could not do so in front of them.) They have planned a three-hour event before the screening and I am their guest speaker. They have invited HIV+ men from all over Ukraine along with a number of medical providers. They have bought everyone tickets to see the film and have paid for their travel to Kiev, some travelling long distances. They’re all coming to see “We Were Here,” and discover how San Franciscans rose up to take care of their own in a difficult and terrifying time. 

We meet for several hours and together create an agenda for the meeting tomorrow. They want me to talk about the early days of the epidemic, how we San Franciscans found ways to work together and eventually overcome some of the obstacles for caring for those who were ill, connecting those who were isolated, protecting those who were uninfected, and creating bridges to the larger community. They’re not sure if what we did in the US will work in Ukraine. One of the men at the table lamented their lack of community and described how stigma keeps gay men isolated from one another. The government will not allow gay parades or other events that could bring gay people together. I ask about the bars, the saunas; is there some way to get support from businesses where gay men gather. But the lack of compassion, both by the establishment and within gay culture itself, seems insurmountable. A sense of helplessness comes into the room and I reassure them that the most important step has already happened; the four of them are there, sitting at the table together, trying to find ways to solve their problems. There have to be others out there, ready and willing to join them in their efforts. The challenge is going to be finding them. 

It gets late and we’re all tired. The interpreter is exhausted and tomorrow is going to be a huge day for all of us. As we draw the meeting to a close, I remember to ask them where they get their funding. They tell me the Elton John AIDS Foundation. (At that moment I vow to never roll my eyes again when hearing “A Candle in the Wind.”) I gather up my things and head to the lobby. They call a taxi and as we wait, I tell them how proud and honored I am to be here with them, thank them for giving me the opportunity to help them however I can. The taxi arrives and as I prepare to leave, they hold their hands out to shake mine. I hug them all, closely, more, perhaps, for myself than them. They walk me out to the taxi and say good night. The driver is an older man and we sit in the traffic together, neither speaking the other’s language. The reason why I’ve come to Kiev has become so clear to me in these last few hours and I become overwhelmed with the situation here and the hopes these people have that tomorrow’s meeting and the screening of the film will somehow make a difference. I so want it to be so and I start to cry. The driver doesn’t know what to do, so we drive silently back to the hotel, his eyes on the road, me crying into a United Airlines napkin. Please send us all good thoughts tomorrow. Good night! 

Tuesday morning, October 23^rd

The day of the screening arrives. Kiev is cold and gray. I’ve tossed and turned all night, restless, thinking about today and hoping that all goes well. I eat breakfast with two men from Warsaw Poland, tell them about the repressive law that may soon be passed here and about the awful homophobic journalist from earlier this week. They tell me they’ll come to the screening tonight to see what happens. As I get ready in my room, I try to think of something to use as a mantra today, something that is greater than fear, repression, or hopelessness. As I’m tying my shoe, this quote from Margaret Mead comes to me: “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” These are the words I will hold close today. I look in the mirror before heading downstairs. I look a bit tired, but I’m ready. 

I arrive at the Film Festival Headquarters and participate in the  ‘Sunny Bunny’ (queer film program) press conference. I’m relieved to see that the rude journalist is not present. I provide a brief synopsis of the film when asked, talk about the importance of maintaining queer visibility, especially in Ukraine’s fight against AIDS. I point out the catastrophic numbers of people living with HIV here, over 450,000 in Ukraine compared to 1.4 million in all of the U.S. During the press conference, however, I am acutely aware that on the other side of town, the community HIV event that I’m supposed to be speaking at has already begun. I slip out of the conference when it’s polite to do so. One of the men I met yesterday has arranged a cab and we crawl through terribly congested traffic and finally arrive at the hotel where the event is taking place. He says the meeting’s been in progress for about an hour and leads me into a large room. A man is speaking about the importance of finding straight family members of HIV positive Ukranians to help support AIDS efforts nationwide. When I look around the room, I see many gay men, some obviously with HIV/AIDS, and lesbians, and am suddenly very much at home. 

I take a seat and Bogand, the director of FULCRUM, a Ukranian social service organization that serves gay men, introduces me. I describe how the film we’ll all be seeing together tonight will tell the story of how San Francisco responded so compassionately at the very beginning of the AIDS epidemic.

Someone asks why the documentary was made and I relate David’s story of a younger partner suggesting the idea to him. I explain how so many gay men of my generation are dead and gone, how important it was to capture our stories and memories from that time. Someone describes the rural region where they come from, how difficult it is to organize there. I describe the recent experience that David and Eileen and I had at a screening in Oklahoma of "We Were Here", how gay men at the university found each other there, started a radio show, create events celebrating coming out, drawing attention to issues like bullying and HIV. Many questions are asked and I respond as best I can. Mostly, I find as many ways as possible to reflect back to them the importance of both queer and HIV visibility, how powerful it is for me to come into this room and see them all here at the table together, sharing their concerns and strategies. I tell them I will remember their courage, admire their commitment to the causes they hold so dear. I tell them I will take their stories home with me and share them (with all of you!). Suddenly the event is over, and we take a dinner break before reconvening at the theatre for the screening. 

The event organizers take me out to dinner. (I order Chicken Kiev, of course. It’s quite good!) Everyone’s very happy with the turnout for the meeting today. They so appreciate my repeated emphasis on gays and lesbians finding ways to work together to remain visible and united, even in such oppressive times as they are living in. They say there is great anticipation for the film tonight and remind me that many have traveled to Kiev from outlying regions. The wonderful woman who has been doing all the translation for me these past few days turns out to be Bogand’s mother. She is as dedicated to the causes of gay rights and HIV support services as her son. It’s all so incredibly moving I can hardly eat. When I first received my invitation to the Festival I was told that there would be an “International Drinking Party.” Everyone attending the Festival was asked to bring a bottle of their ‘Favorite National Drink.’ I brought a big bottle of Jack Daniel’s Tennessee Whiskey in my luggage, but was so jet-lagged I missed the party. At the dinner table, I pulled the bottle out of my backpack and presented it to the organizing team. I said the next time they’re feeling hopeless or frustrated in their efforts, to take a drink from this special bottle. I told them it was a magical elixir from my country, guaranteed to help them through difficult times. I could see in their eyes that they were moved by the sincerity of my gift. 

We all arrive at the theatre. The lobby is full. There’s a camera crew; I do a quick interview. There’s much excitement. Some of the people who were at the first panel I participated in are there and laughingly recall the rude journalist. We look around the lobby, but he’s nowhere to be seen. Hallelujah! The screening is supposed to begin at 7:30, but at 7:45 the doors to the theatre are still not open. 8:00 comes and goes. One of the festival organizers, Victoria, comes to find me, explains that they are having some technical difficulty getting the film to operate, but they’ve almost got it working. I can hear the sound of my own voice coming from behind the closed doors of the theatre and am relieved. She explains that this cinema is the oldest in Kiev, built in 1931, and there’s a small problem with the projection equipment. 8:15 comes and goes. I’m getting worried. The audience is restless. 8:30 . . . and suddenly the doors open and we all go inside. The woman from the festival, Victoria, welcomes the audience and then Bogand introduces me. I get up, thank them for coming, and then appreciate that they had to wait. I say, “We’ve all just had an opportunity to practice one of the most important skills necessary for social change . . . patience.” There’s much laughter and applause and then a voice is heard from the back of the theatre. Everyone gets up and starts to leave. “What is it?” I ask Victoria. “There’s a problem with the copy of the film we have. I’m so sorry Ed . . . there will be no screening tonight.” 

As the last of the audience leaves, I stand with Bogdan and his mom, other staff members from FULCRUM, and Victoria. Everyone is stunned. There’s an awkward silence. Bogdan and his team have worked so hard to organize the event today, bringing so many people from outlying areas Kiev . . . and now this! Victoria is obviously shaken. She says she feels so guilty and is terribly sorry. I tell them that I am disappointed, yes, of course, but I’m not angry. There is no blame. Victoria says they’ll contact David Weissman, get another copy, be sure to screen it before the festival is over. I can sense they’re trying to make me feel better and I work hard to tell them that I’m fine, really. I say that the most important part of the last 4 days for me is that I was able to come to Kiev and meet them all. I’ve seen how hard the Festival organizers work to keep queer films as part of their program. And that I am so profoundly moved by the work the agency is doing for the rights of gay men and those living with HIV in Ukraine. “It’s you, the people I’ve met, that have made my experience here so wonderful.” It’s late now, and everyone’s exhausted. I say goodbye to each of the FULCRUM staff. Bogdan’s mother gives me a big hug. Bogdan has told me at dinner that there will be an HIV conference here next fall and he’ll have me return, so I assure her that we will meet again. After they leave I stand in the lobby with Victoria, waiting for my cab. She’s tearful and I reassure her again that I am fine. And as I’m driven back to the hotel for the last time, I’m aware that I REALLY AM fine. People here will see “We Were Here,” in their own time, in their own way. My experience in Kiev has been spectacular and the people all so inspiring. I know I will return. We may not have been able to watch “We Were Here” as a group, but it definitely has achieved something else, something greater . . . it has brought us all together. 

Wednesday morning, October 24^th

I’m in my hotel room, packing, getting ready to go down to the lobby and take the shuttle to the airport. I’ve received an e-mail during the night, stating there will probably be a screening of “We Were Here” today after all. I’ve check with the airlines, but it’s impossible to reschedule my flight now . . . I leave in 3 hours. I have to let go, and so I do. After everything that’s occurred in the past 4 days, I think I can’t possibly be surprised by anything else. But just now, through a window I opened earlier this morning, a little bird has flown into my  room. It’s small, black and brown and grey, but with a bright green streak on it’s chest. It’s sitting on my suitcase right now, looking at me. I know it sounds unbelievable, but there it is. I get up slowly, speak quietly to it, try to get it to fly back out the window. It flies further into the room instead. I go to the balcony door, open it wide, and sit back down. Slowly it sticks its head out from under the bed, looks at me, and then hops across the rug and out the door. I stand and watch it on the balcony railing. It chirps at me and then flies out across the river. I don’t know what to make of this final encounter, but it feels like a good omen to me. I gather up my things and head to the lobby. I’ll be home tonight, in my own bed. Thank you dear friends, for all your kind words and good thoughts. They’ve meant a lot to me.

Editor’s note:  Boone, 31,  has two days ago been found guilty of the attempted murder of three men, three counts of aggravated sexual assault and three counts of administering a noxious substance (ie, his semen). You can read about the controversial case here.

This article written by Michael Burtch for PositiveLite.com originally appeared on PositiveLite.com on August 10, 2011.

The Canadian HIV/AIDS Legal Network provided the following comment this week:  "The Canadian HIV/AIDS Legal Network is not involved in the criminal case decided today in Ottawa and will not offer comment on the specific facts, legal arguments and resulting sentence.

In general, the Legal Network opposes criminal charges for HIV non-disclosure in cases of otherwise consensual sex, because an overly broad use of the criminal law does more harm than good. We recognize that criminal charges may be warranted in limited circumstances such as those rare occasions where an individual has a malicious intent to infect someone and there is a scientifically significant risk of transmission. 

We oppose charges for non-disclosure in cases of oral sex, where the science confirms that the risk of transmission is approaching zero. We also oppose charges in cases where people practice safer sex (e.g., use condoms) or have a low viral load, again because the risks of transmission are not scientifically significant enough to justify criminal prosecution."

As to further further reaction, The AIDS Committee of Ottawa has provided a statement which you can read following this interview.

***************

Michael Burtch: On April 28th I conducted an interview with Steven Boone at the Maplehurst Correctional Facility. Steven had asked that I use my pulpit as a blogger for PositiveLite.com to share his experiences about being behind bars and being charged under the criminalisation of HIV non-disclosure We agreed that questions pertaining to the specifics of his trial were off limits, and that the interview would not be posted until the conclusion of his preliminary trail on July 14th . On that date, Steven made national headlines when judge David Wake dropped all attempted murder charges again him.  He will stand trial for 21 other charges in early 2012. 

(The story "HIV infection not a death sentence" was covered in PostiveLite here. )

Michael Burtch: Can you describe your arrest? What happened?

Steven Boone: I was at a friends house just chilling when I received a phone call around midnight on May 5th/6th, 2010. The call showed up as a Private Number, it was Sergeant McGetrick of the Ottawa Police Services. She explained to me that she needed to speak to me, I asked if it could wait until the next day and she said that it couldn’t wait. I became concerned and asked her point blank if I was under arrest and she said no, she just wanted to talk, then I would be free to go. We arranged to meet at a Tim Hortons at 12:30am. I had left my car at home, so my friend drove me to the Tim Hortons. When we got there, there was no sign of the Police, so we decided to go through the drive thru and get Iced Caps. By the time we got to the window, we were surrounded by a SWAT team and I was arrested.

MB: You’ve now been in jail longer than you’ve been HIV+. Can you tell me a bit about what life behind bars has been like for you over the last 12 months?

SB: It’s been difficult. Most of the people I meet are career criminals, drug addicts, and violent offenders, since I’m none of these, and I don’t consider myself a criminal, I don’t really feel that I fit in with those around me. I’m forced to associate with people I would not usually associate with, which causes me great anxiety on a daily basis. The food served is below standards and the jail guards treat inmates like we’re cattle. This experience has been the most humiliating and degrading experience of my life.

MB: You’ve had your name, picture, sexuality, and your HIV status released by the Ottawa Police to the media. How has that impacted your experience behind bars while you await trial?

SB: It has seriously impacted my experience behind bars because I have experienced homophobia, and discrimination in relation to my HIV status, by both fellow inmates, as well as jail staff, as a result. I also spent several months in segregation as a result of the publicity in my case. I’ve also suffered from verbal death threats, physical assaults, and sexual abuse, all unprovoked, by other inmates and even corrections staff. Despite being in “Protective Custody” I haven’t felt very protected. By releasing  my name, picture, sexuality, and HIV status, the Ottawa Police put my life in unnecessary danger and caused many dangerous events to take place. Because of this, I’ve had to be moved to Maplehurst, a jail 6 hours from Ottawa, in Milton, Ontario where I can maintain a low profile and remain safe. This was something I had to request.

MB: What’s been the impact on your friends and family since the release of the details concerning your charges?

SB: It’s been difficult especially for my family, mostly because I’m still incarcerated and because of all the publicity. Everyone in my family has been very supportive. My Mom tries to make it to my court appearances as often as possible, as do my sisters. When I’m in Ottawa, they all try to visit as much as possible, unfortunately, inmates are only allowed two visits per week. Initially, the Ottawa Carleton Detention Centre was often turning away my family and friends who would try to visit. My Mom, who would drive an hour to see me each time, was especially upset by this. Another issue is that inmates are only allowed to make collect calls, which generally causes outrageous phone bills for family members who have landline telephones (as cell phones do not accept collect calls).

MB: I was shocked when you told me that Public Health served you with a Section 22 after you were already incarcerated. What kind of support are you getting around your HIV status from behind bars, agency or otherwise?

SB: As you know Michael, I’m in regular contact with the AIDS Committee of Ottawa and the staff there have been really supportive since my arrest. I have also been receiving support from PASAN (Prisoners HIV/AIDS Support Action Network) surrounding my HIV status. I have a case worker with PASAN named Mooky, whom I speak to over the phone on a regular basis and comes to visit me at the jail whoever possible. PASAN is a great resource for inmates living with HIV, and they even put out a newsletter called ‘Cell Count’ for inmates. ‘Cell Count’ brings HIV/AIDS awareness to the prison population, a well as prisoner rights information, inmates are encouraged to submit artwork, poems, and their own thoughts, there’s also a pen pal section. Anyone can check out the PASAN website at www.pasan.org .

MB: You started HIV medication while imprisoned. Have you been regularly receiving your doses? Have you been experiencing any side effects?

SB: Yes, I started HIV medication in September 2010 after asking for several months to be placed on them. I’m only actually taking one pill a day, it’s called Atripla. The only side effect I’ve experienced is vivid dreams [but] my HIV specialist says [I’ve reacted] very well to the medication, my viral load is now undetectable I am very happy to report. There have been a couple of instances while being transferred back to Ottawa where I was denied my HIV meds. I’ve brought this up with Mooky, and he assures me that the next time I am transferred, he will make sure it doesn’t happen again.

**************************

Statement from the AIDS Committee of Ottawa.

FOR IMMEDIATE RELEASE

November 1, 2012 - Since 1985 the AIDS Committee of Ottawa (ACO) has provided support, prevention, education and outreach services from an integrated anti-racism anti-oppression social justice framework that promotes the holistic wellbeing of those living with, affected by, impacted by and at risk of HIV/AIDS in Ottawa. Given these values, ACO would like to express its discontent and trepidation given the guilty verdicts of Steven Boone on October 31, 2012.

Yesterday’s verdicts go beyond Steven Boone, as it sets an unwarranted precedent for all people living with HIV/AIDS. The severity of the charges against Mr. Boone was far too great as HIV is not the threat it once was. An AIDS diagnosis in Canada today is rare and highly treatable. Thanks to advancements in pharmaceuticals and medical treatment, PHAs (people living with HIV/AIDS) are now able to lead long, healthy, and productive lives. Yesterday’s verdicts contradict medical science and merely promote fear and hatred. These verdicts have painted Steven Boone, and peripherally all PHAs, as malicious and toxic.

These verdicts will aid to increase rates of HIV in Canada as talking about sex goes back into the closet and stigma against people living with HIV/AIDS continues to thrive. Today, 30% of people living with HIV in Canada are not aware of their status. The fear these verdicts perpetuates will discourage individuals from accessing sexual health testing and treatment. Consequently, the demonization of people living with HIV as vectors of infection only hinders HIV education and prevention programs.

ACO cannot ignore the homophobia and sex negativity that plays into this case. This case depicts the continual targeting of PHAs seen through disproportionately high conviction rates in HIV non-disclosure cases compared to considerably lower conviction rates in other sexual assault cases. This trial will only act to fuel the stigma associated with HIV/AIDS. In an ideal world, we would all be able to talk about sex and our sexual health openly and honestly, and negotiate safer sex. However, we live in a world where disclosing one’s HIV status means one is met with physical violence, stigma, and criminalization.

These verdicts, in conjunction with the Supreme Court of Canada’s recent ruling on HIV non-disclosure, has unraveled decades of work done in HIV prevention and education. Furthermore, expecting the law to replace each of our responsibility to protect ourselves and our partners is flawed logic.  HIV is a medical issue, not a legal one and Canadian law is not a replacement for a condom. The spectacle of the court case and the Crown’s arguments have provided citizens with faulty facts regarding HIV transmission and ignored the complex realities PHAs face each and every day. These verdicts are nothing to be celebrated. No one has “won”. Criminalization is not the answer.

There is nothing more powerful and compelling than to hear someone’s story in their own words and from their own voice. This is something that has been the cornerstone of al I do, and I think it is very important that people be heard. It’s funny though, because many times when we have the chance to hear what is supposed to be someone’s story it has been watered down or even changed by the people, places or things that is presenting it. The story becomes more of a plug for the so called “outstanding” job the agency has done or how wonderful their life has become since taking a certain drug. Whenever I see this I always question or wonder how much of the story is actually theirs and how much of it has been changed to make some person, place or thing look good.

Today I want to share a personal story with you that comes directly from the person. I have not changed a thing or suggested that they say something a certain way. It’s Victoria’s story and no one can share it better than her. After all, she lived it, she survived it, so who better to tell it.

I met Victoria not that long ago at a CAB (Community Advisory Board) meeting where she and I are board members. She also does outreach for the organization as well. The first thing I noticed about her was her eyes. They were bright and filled with so much joy and a strong feeling or self-worth. Then I noticed her smile and right away I wanted to know who this woman was. She just had this energy around her that is very peaceful.

After a few CAB meetings and hearing her speak and share her experiences, I wanted to ask if she’d be interested in sharing her awesome story of survival and victory with my readers.  She said yes, so it is with great honor and respect that I allow Victoria to share her story with you in her own words.

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Kengi: How did you find out?

Victoria:  I was living in a recovering home. I was contacted by a social worker from the health department and I was told I was HIV positive.

What was the most important thing going on in your life at the time?

I was a very sick dysfunctional addict, co-infected with HIV and Hep C. I was out of control and had lost the power to take my medications. I lost everything and everyone I loved. I use to recycle and prostitute to support my addiction. I was homeless; I slept in alleys, in parks, on church steps and in abandoned houses. I felt like I was dying. I became sick and tired of being sick and tired and checked into a program in efforts to regain my health, my life and my family back. I yearned to reestablish my relationship with my God. Because after all the episodes I had been through, I knew it was only by his love, grace and mercy that I was still alive.

What was the mental struggle?

To stop using drugs, so that I could start taking care of my health because I felt like I was slowly dying. I began to feel pain in my body and I lost a lot of weight. I looked very bad. I was homeless and hopeless. I struggle to find the strength within myself to overcome my addiction so that I could start taking care of my health. I turned to God for the answers, all glory and honor belongs to God. I believe he answered my cry and did for me what I could not do for myself.

How had your life changed since then?

My life is gradually getting better one day at a time. By becoming a volunteer at LODi (Ladies of Diversity) some of the things I’ve learned about are preventative measures, risky behaviors, how to distinguish myths from the facts and the importance of taking my medication. When I stopped taking my medication I did not know that my HIV would eventually turn into AIDS.

I use to feel suicidal. I found out that I really don’t want to die. Now I am committed to taking my medication religiously. My health has improved tremendously. I am now undetectable. I look and feel 100% better and have a new chance at life to try to get this thing right and do the things I want to accomplish before I really do die. In other words, I’ve learned to appreciate life and make the best out of a bad situation.

I’ve changed my mental attitude towards myself and my illness. I’ve stopped feeling sorry for myself because every time I felt ‘poor me, poor me’ I would pour me another drink along with playing the blaming game. I’m learning to accept people, places and things as they are and stop trying to play God and let God be God in my life. I’m learning to accept responsibility for my own actions and behaviors and steer clear of those negative behavior patterns. And because I started from scratch when I got out of the recovery home whenever I lacked money or got stressed I would recycle to relieve stress over the situation I felt powerless over. I did it as a form of exercise and I used the money to help furnish my apartment, support my family and improve my living conditions. I’ve used my illness as a stepping stone to come out of my situation.

I am now dealing with the stigmas my family and others have towards HIV. I’m also returning to school to major in alcohol/drug counseling so that I can learn to transmit the knowledge I learn and share my experiences, strength and hope with others in hopes that it will help others. I believe we can only keep what we have by giving it away.

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Victoria is a very strong woman willing to share her own struggles in life as a road map or moral compass of sorts to help others remain on the path. She is a huge inspiration to me and I am so humbled and thankful that she allowed me to share her amazing story with you.

In the coming weeks I will take the time to feature people who want to share their HIV story in their own words. I hope you will read with an open heart and mind.