On April 5, 2013 I took my first dose of Truvada as pre-exposure prophylaxis (PrEP). 

So many questions were swirling in my head at that point, and had been for weeks and months. As I was about to swallow my first pill, I gazed outside the window and wondered…

• How did I end up in this situation where I feel like I need PrEP?

• How is it possible that it was this easy for me to access PrEP when so many people don’t have access to ARVs to stay alive?

• How did I go from being a major PrEP skeptic 4 years ago to actually taking PrEP now?

• What would people think if they knew I was taking PrEP and therefore by implication putting myself more at risk than I’d even been willing to admit to myself?

• Will I be taking this pill every morning for the rest of my life?

• Will I start taking more risks than I did before?

• Will I experience side effects?

• When will this damn winter end? I know this is Canada and everything, but enough already with the grey skies and slush and dreariness.

To find clues about how I got here and how long I might need PrEP, I took a sexy stroll down memory lane. Or as I like to call it…

My Sex Life: A Tale of HIV Risk in Five Phases

Phase 1: “In the Beginning”, lasted 8 years. I grew up in Moncton NB, (right) a small town on the East coast of Canada, and stayed there until my mid-20s. Let’s just say there were not very many opportunities to participate in activities that would have put me at high risk. This was pre-interwebz and smartphones, folks. In a town with one gay bar. I don’t do bars. Ever. All my experiences were very low risk. I didn’t even want to experiment with high risk behaviours. I was much too scared. I watched my father, an out gay man, progressively get sicker and eventually die of AIDS, desperately gasping for breath in his last hours, right in front of my eyes. I was 18 when we learned he already had AIDS and he died when I was 20. Trust me, this leaves an indelible impression on a young gay man who is just beginning to have sex, and who has not even come out yet. I did come out very shortly thereafter, and I ended up in a long-term relationship pretty much immediately.

PrEP would have made no sense for me then. I didn’t even need condoms. That would come later.

Phase 2: “Spreading my Wings”, lasted 9 years. I moved to the Ottawa/Gatineau region where I still live now, a sprawling metropolis compared to what I’d known until then. I was here by myself for a while. I decided it was time to explore and play around. Even after my partner joined me. But I was still not at high risk for HIV. This was largely because I was frankly uninterested in activities that would have put me at high risk. Partly out of personal preference. Partly out of concern about “bringing something home” to my partner (oh ya, I was suuuch a considerate adulterer!). Partly because at this stage my fear of getting HIV still considerably outweighed any desire to do anything even moderately risky.

PrEP would have made no sense for me then. I didn’t even need condoms. That would come later.

Phase 3: “Letting Loose”, lasted 1.5 years. After the end of my 14-year relationship, I decided it was time to explore and play around even more. Not that I’d been an angel before. Far from it. But now I was ready for some adventure. Through it all, I can honestly say that I managed to maintain absolutely 100% condom use. Each and every time. How did I manage that? For one thing, while my fear of getting HIV no longer outweighed my desire to explore activities that happen to be more risky, it still was strong enough to reinforce my resolve around condom use. It also helps that negotiating, convincing, or cajoling are rarely required when you’re almost always the one actually wearing the condom.

PrEP would have made very little sense for me then. That would come later.

Phase 4: “The Dark Ages”, lasted 1.5 years. Through a very severe depression, there was nothing going on. Nothing.

PrEP would have made no sense for me then. I didn’t even need condoms. That would come later.

Phase 5: “The Renaissance”, lasted 5 years. I was back to a life of adventure as a single gay man in a mid-size city, and on very frequent travel. At first, I still managed to maintain 100% condom use. But gradually, over the course of the last 2-3 years, I started to veer away from 100% condom use for reasons that I will explain in my next installment. As a sneak preview—it has to do with the current state of knowledge about HIV transmission, and, well… because sex feels better without condoms! *GASP* Stay tuned for the shocking next episode.

So now, for the first time in my life, at the age of 43, and after 25 years of active sex life (minus a brief depression-induced hiatus), PrEP makes sense for me. How long will this new phase last? How long will I be on PrEP? I don’t know. But luckily it exists and I can access it.

***

There are a million other things I have to say about PrEP. Well OK, maybe only half a million. But luckily others have already addressed many of them, and have done it so eloquently. I encourage everyone to check out the following remarkable first-person accounts:

• Len Tooley did a series of interviews on PositiveLite.com.

• Jake Sobo has been writing a whole series of articles on his blog, “My Life on PrEP”.

• Several other first-person accounts can be found right here on the “My PrEP Experience” blog.

Len and Jake are so friggin’ smart and insightful and articulate, I want to marry both of them. It has been a tremendous source of help and support to read the thoughts of everyone who shared their stories publicly. A big hairy thanks to Jim Pickett for starting the “My PrEP Experience” blog because he recognized that amidst all the heated debates and discussions and policy decisions about PrEP, we weren’t hearing the voices of real-life flesh-and-blood people actually using PrEP.

To be continued. . . 

About the author: Marc-André LeBlanc has worked in the community-based HIV/AIDS movement for 20 years.  He does community engagement, capacity-building and policy work related to biomedical HIV prevention research, both in Canada and globally. He is a co-founder of International Rectal Microbicide Advocates (IRMA), serves as secretary on their steering committee, has authored two reports on the global state of rectal microbicide efforts, and leads IRMA’s global efforts to ensure the safety of sexual lubricants. Marc-André loves movies. He got a film studies degree while working full-time, just for the sheer fun of it. He is now leading advocacy efforts to get ice cream and popcorn recognised as new basic food groups in Canada’s Food Guide

This article first appeared on My PrEP Experience here. 

It’s always heartwarming to watch communities rally together when they have a common health concern.  In the early days, the gay HIV community was a great example of how people were able to join forces in the face of a terrible stigma and even death to ensure strong networks were able to provide support.  It is a model that has been emulated in the breast cancer community, MS, liver and heart disease and many others. 

I was reminded of this recently at the Gathering for people living with HIV across the province, organized by Positive Living Society of BC.  People were relieved to be connected with others... they could chat informally without fearing stigma and there was clearly a sense of camaraderie and common purpose.

Recently, I was thinking of our family vacations to Eyam, Derbyshire where my grandmother used to live.  It’s a beautiful, historic village in the Pennine hills, full of old stone houses and even a hotel on the English haunted inns list, The Miner’s Arms.

Hundreds of years before my grandmother lived there, Eyam had faced terrible stigma and death too.   In August 1665, some cloth was delivered from London to a local tailor.  He hung the damp cloth to dry and it released fleas that were hidden in the material - they were carrying the bubonic plague.  Within one week, the tailor was dead and many in the little village were dying.

Unlike HIV, the bubonic plague was caused by a bacterium and was passed very rapidly by the bite of fleas.. The village decided to isolate itself from surrounding villages and from each other.  The church services were held in a field and a well above the village was used for money to be dropped in the water by the villagers and, in turn, the nearby villages delivered food.  The Riley Graves on another hill lay testament to a mother who buried her husband and six children within 8 days - a sad and horrific tragedy.

However, for some reason when the village finally opened its self-imposed quarantine, a quarter of the villagers had  survived and there is a belief that it was for the same reason that some people seem to have a gene which gives them immunity to HIV (the gene has been found in the descendents of Eyam’s survivors).

The community spirit of that tiny village and their determination to overcome the odds and their own personal fear reminds me very much of the great courage of people with HIV.  Many HIV+ people have not only had to combat the ignorance of others but also decide as a community what steps they will take to network together and fight the disease.

This all leads me to believe when we are sick with a mutual illness, we find a bond and a new reality emerges.  In death, humans reveal powers of endurance and their resilience is at its best.  Alliances are struck and there’s a real sense of connection.  At a time of mutual isolation, there is kinship, respect and love.

Bob Leahy: Thank you for talking to PositiveLite.com, Julio.  The last time we talked was in January 2012 I think.  How have things shifted on the treatment as prevention scene in the last fifteen months.  Are you starting to feel optimistic in terms of what you’d like to see?

Dr. Montaner: Well as you know I have been feeling quite strongly for quite a number of years now that treatment as prevention truly offers an opportunity to fully realize the potential of antiretroviral therapy, first and foremost at the individual level, secondarily to pay a huge dividend when it comes to preventing HIV, TB and a number of other diseases.  For us the challenge was initially to get enough of a data base that the argument could be made compellingly enough so that every level of decision making, from policy makers to community, could rally behind it. In my mind the evidence, particularly when you weigh it against the challenge we are trying to address, was already overwhelming in 2006. Imagine how I feel now!

I think that since HPTN052 came on board that has allowed us to say this is definitive and conclusive evidence, and that we now need to move on to implementation discussions. And in the last eighteen months we have seen a huge political evolution, from Hilary Clinton to President Obama to (UNAIDS) Michel Sidibe progressively increasing the enthusiasm. To me, Michel Sidibe was incredibly valuable in 2010 when he formally endorsed getting to zero through treatment as prevention but I sense that his level of enthusiasm and eagerness today is exponentially greater, which is a great sign.

Bob: But in Canada, how do you feel about this.  Have we made progress at all here in the last fifteen months?

You know British Columbia has been unique in the sense that I have been able to galvanize political support based on the evidence exclusively and the return on investment, if you want to put it that way. The Province has been 100% behind us. Unfortunately I have to say that I have been disappointed that the same attitude has not really panned out across the country. There has been a whole lot of intellectual discourse, and it’s incredibly frustrating, you know, when you show data regarding the evolution of the epidemic in British Columbia and you juxtapose that against what is happening in Manitoba and Saskatchewan, for instance, where HIV rates are continuing to rise - and it begs the question what else can I do to make my point?

I point my finger directly at the federal government. I think it is Stephen Harper’s fault and the health ministers’ fault all the way from Tony Clement to Leona Aglukkaq, and PHAC’s fault too because they are unable to release themselves from their political masters to say “we have a crisis, we know how to address it, let’s do it”. In an area where the only answer I get is "this is a matter for provincial jurisdiction" then that allows for all kinds of anarchy to occur and basically we are left without a national HIV strategy.

So how about your provincial partners?  Have you been able to make headway with them or are they still looking for more data?

Well that`s the problem. We have had very good conversations with individual leaders all across the country but they have not materialized in to an executive order to move forward  and my frustration is that the lack of attention by the federal government to this issue makes it possible for the chaos to continue.

I know CATIE is trying to foster a dialogue by hosting national consultations on this issue and also convening a treatment as prevention-themed conference in September. Do you regard these as positive steps?

In my opinion, anything that will create a forum for this kind of discussion to take place is a very well received opportunity. I am a little bit frustrated about the fact that in the CATIE consultation last year there was lot of discussion but I would have hoped it would be the ideal forum that people would rally around the idea and say we want more, we want better, we want  targeted outcomes – and it didn’t happen.

OK. Let me ask you something else.  In the room today (at the TasP conference) you could get the impression that Canada, instead of being a leader in treatment as prevention as we once seemed to be, may be falling far behind other nations. How would you characterize our position now in the world?

Well you heard today about the progress we have together made with China.  I was instrumental in working with the CDC in China, managing to inform their new policy which came about even before HPTN 052, and we have made phenomenal progress there. I’ve been working with colleagues of mine in Rwanda and their work has been incredible, with plans to expand and with a clear national policy, much like China.  It's absolutely brilliant.  And then there’s New York City and San Francisco and Washington D.C. The list goes on and on.

So how does that make you feel?

Well I think individually I feel incredibly pleased and gratified I have been able to do this in my province and be able to export that to willing parties around the world. But it breaks my heart that I haven’t been able to do the same thing for the rest of my country.

Well, why haven’t the other provinces taken treatment as prevention up? What’s behind all that?

I can tell you what have been the keys to our success as opposed to why there is as yet no similar success elsewhere in Canada. Firstly, for us it has been important to have a focussed program; at the BCCFE we have one item in front of us and it’s HIV. Secondly, we have a very aggressive data generation mechanism; we monitor everything and based on that data we can go to politicians and say "this is the evidence about what is happening in your own backyard and you need to do something about it". Thirdly we are very strong advocates, we work with community and with partners to create the urgency that is needed for politicians to feel not only is this what should be done but has to be done. 

Why is this not happening elsewhere in the country? Well, I think we (nationally) need to get our act together. We need to make this something that the politicians cannot walk away from – and I think the elements . . . when you see the state of the epidemic in the aboriginal community and the MSM community, we need to make this a priority.

OK. Now I have to ask you about the issue of MSM and the fact that your numbers of new infections in B.C. have not declined in that population. Why can’t you get the same results there?

Some have argued that treatment as prevention may not work in MSM.  I think that is absolutely wrong. The biology says it does work, it works on the virus no matter where it is. If it works in injection drug users it will work for everyone else. 

So here’s the situation. Treatment as prevention works in serodiscordant couples.  New infection rates among MSM – older MSM – are coming down. The problem is that the rate in young MSM is going up. Because of stigma and discrimination and all the issues around sexuality they come out poorly equipped to protect themselves. They make choices which put them at risk because the environment is not prepared to welcome them in a supportive manner. So they get infected before we can get to them.

So how do we change that piece?

It’s a very tall order to ask a clinician to change that piece, but I have two answers for you. The first one is that if we offer treatment to everyone we possibly can, we make the world a safer pace for gay youth to come out.  Even if nothing else changes, that will help.  Of course that’s insufficient. The second one is systemic change where we access youth before youth come out. Now you ask how difficult that is in places like Abbotsford or Hope or even Vancouver where talking about sexuality in schools is problematic. Beyond that talking about homosexuality, in some school districts, is impossible. We need to change that, because if we cannot have those conversations early on and show that we are supportive of gay youth even before they identify themselves then we will always be trying to protect them after they have got infected.

OK. I want to ask about the role of people with HIV in advocating for treatment as prevention. I’ve had a feeling that the community is absent, somewhat, from the discussion and that the discussion when it occurs tends to be driven top down, as opposed to from the bottom-up, and bottom-up is the way direction has come from historically. Do you agree that there is an advocacy gap there and that is something we need to look at?

Look Bob, I’ll be very frank with you. In my early career working with HIV  - and I’ve been doing this since the eighties – I was there when the community was against us because they didn’t feel we were doing enough, when we were pushed because we didn’t have the answers, they just weren’t available.  I was there when we finally merged and worked together after 1996 to make treatments available faster, to get the regulatory process changed, to get services to the community. But the community has lost its focus. We’ve moved to solve a lot of the problems you have but the sense of urgency to help us solve the next problem is almost no longer there. All the people in the community have different issues. What is missing is that unifying focus that says “Julio, we want you to work with us to end the epidemic.” So I am a lonely ranger here, trying to push for the end of the epidemic.

Well, personally, you know I’ve changed my mind on treatment as prevention. I’m in favour now. And the argument I’ve found most persuasive is that starting treatment early is undeniably good for us.

The reason I started doing this work is not that I had an eureka moment that treatment could prevent transmission.  It was not my priority. This was about my patients, my number one motivation.

I don’t think everyone understands that. I think some people feel that people like yourself have a public health agenda first and foremost.

No. And that is the number one problem.

OK. One more question and that is about the expansion of testing towards more universal testing. I know some jurisdictions have an issue with expanding testing to what we’ve regarded as low risk groups and the issue they have is a cost-benefit one – the cost doesn’t justify the small number of new infections you are likely to bring to light.  How would you respond to that?

Well I met with the Deputy Minister of Health here and said I wanted to do normalized testing, offering testing for everyone who has ever been sexually active in this province.  He said, “Oh no, Julio, here we go again. We cannot afford it”.  I said “you cannot not afford it.” He said “people are going to reject it, they are going to refuse.” I said “Let’s pilot it. We’ll offer testing to people at no risk, either self-perceived or perceived by their physician, who don’t have any conditions that make you suspect they could be HIV-infected and so when they come  to emergency or admittance at three local hospitals with totally different demographics, we offer them an HIV test." We did 10,000 or so tests and found consistently five per thousand came back with HIV-positive results. My colleagues in Argentina did the same thing in acute care hospitals in Buenos Aires – and five per thousand came back positive. CDC in Atlanta says that if you only get one positive per thousand tests it pays for itself.

So that’s your answer. The return on investment is fabulous because you are doing two things – those people change their behaviours, they recognize that they need care and they render themselves no longer infectious. It’s a no brainer.

Julio, you are very persuasive, I must admit.  Thank you so much for talking to us at PositiveLite.com again and thank you too for welcoming us to Vancouver for a great conference.

My pleasure, Bob 

Photo by Bob Leahy.

Read my conference report here.

This article by Michael Carter first appeared on aidsmap.com here.  

Aidsmap.com reports taking HIV pre-exposure prophylaxis (PrEP) does not lead to increased levels of sexual risk behaviour among gay men, investigators from the United States say.

Taking HIV pre-exposure prophylaxis (PrEP) does not lead to increased levels of sexual risk behaviour among gay men, investigators from the United States report in the online edition of the Journal of Acquired Immune Deficiency Syndromes. Numbers of sexual partners fell, as did the proportion of men reporting unprotected anal sex.

“We found no evidence of risk compensation among at-risk MSM [men who have sex with men] initiating PrEP,” comment the authors. “Mean numbers of partners and the proportion of men reporting UAS [unprotected anal sex] decreased significantly from baseline during 24 months of follow-up.”

PrEP is an emerging HIV prevention technology. It involves HIV-negative individuals taking daily antiretroviral therapy to reduce their risk of infection with the virus. In 2010, results of the iPrEx trial involving gay and other MSM showed that daily PrEP with Truvada (FTC and tenofovir) reduced the risk of infection with HIV by 44% overall, with high efficacy seen in people with the best treatment adherence. Although the results of PrEP studies involving heterosexuals have been mixed, the United States Food and Drug Administration approved Truvada for use as PrEP by adults with a high risk of HIV infection.

However, there is concern in some quarters that use of PrEP may lead to increases in sexual risk behaviour. Mathematical models suggest that even modest increases in the proportion of gay men reporting unprotected sex could wipe out the beneficial effect of PrEP at a community level. However, the precise impact of PrEP on sexual risk taking is highly controversial.

Data gathered during a PrEP safety study allowed investigators to explore the impact of PrEP on the sexual risk behaviour of HIV-negative gay men with a high risk of infection with HIV.

A total of 400 men were recruited to the study between 2005 and 2007. All reported anal sex with another man in the preceding twelve months. The study was double blind and placebo controlled. Participants were randomised either to start treatment immediately or to wait for nine months. The men were interviewed at baseline and then every three months about their sexual risk behaviour and use of recreational and erectile dysfunction drugs. The study lasted 24 months.

At baseline, the men reported a mean of 7.25 sexual partners in the previous three months. This fell significantly during follow-up to a mean of 6 partners between months 3 and 9 and a mean of 5.71 partners between months 12 and 24 (p < 0.001). These declines were similar in the immediate- and delayed-treatment arms.

The mean number of reported HIV-positive partners or partners of an unknown status fell from 4.17 at baseline to 3.51 partners between months 3 and 9 and 3.37 partners between months 12 and 24 (p = 0.01). There was also a significant fall in the number of reported partners believed to be HIV negative.

Use of poppers (p < 0.001), erectile dysfunction drugs  (p < 0.001) and a higher perception of the efficacy of PrEP (p = 0.04) were all associated with reporting higher numbers of sexual partners during follow-up.

At the start of the study, 57% of men reported unprotected anal sex in the previous three months. The proportion fell to 48% between months 3 and 9  (p = 0.001) and to 52% between months 12 and 24 (p = 0.03).

The proportion of men reporting unprotected sex between months 3 and 9 was similar between the immediate- and delayed-treatment arms.

There was also a fall in the proportion of men reporting unprotected sex with an HIV-positive partner, from 29% at baseline to 21% between months 3 and 9 and 22% between months 12 and 24 (p < 0.001). Declines in unprotected sex with HIV-positive partners were seen in both the immediate- and delayed-treatment arms.

Factors associated with reporting unprotected sex during follow-up included younger age (p = 0.01), use of poppers (p = 0.02), erectile dysfunction treatments (p < 0.001) and methamphetamine (p < 0.001).

Participation in the study did not lead to an increase in the number of reported episodes of unprotected anal sex, which remained steady between months 3 and 9 and months 12 and 24 in both the immediate- and delayed-treatment arms.

There was a fall in reported episodes of unprotected sex with HIV-positive partners from two in the previous three-month period at baseline to 1.37 between months 12 and 24 (p = 0.05). This was the case for both the immediate- and delayed-treatment study arms.

In contrast, the number of episodes of unprotected anal sex with partners thought to be HIV negative increased between baseline and months 12 and 24 (2.75 Vs. 4; p = 0.01).

“These changes may represent a possible increase in seroadaptive practices, in which men preferentially have more episodes of UAS with assumed HIV-negative partners,” comment the authors.

They also note “men in this study received risk-reduction counseling, condoms and lubricants, regular HIV/STI testing, and linkage to prevention services…which may explain the observed risk reduction and could explain the observed risk declines and could mitigate any potential for risk compensation.”

Despite this, the investigators were encouraged by their results, which they believe “provide important information on changes in risk practices among MSM in the US initiating PrEP in a clinical trial setting”.

Reference

Liu AY et al. Sexual risk behavior among HIV-uninfected men who have sex with men (MSM) participating in a tenofovir pre-exposure prophylaxis randomized trial in the United States. J Acquir Immune Defic Syndr, online edition, DOI: 10.1097/QAI.0b013e31828fo97a, 2013.