(Part One) Can gay men involved in HIV work ever imagine using PrEP?

via Positive Lite, by Marc-André LeBlanc

 

"Past, present and future! In the past, going through particular 'slutty' phases, serodiscordant relationships, and 'party' phases could definitely been safer with the addition of PrEP. The anxiety of near misses and testing around those periods would also have been toned down substantially. Presently, and moving forward I am considering PrEP as another tool in my arsenal of safety that will also take away from testing anxiety in the future, especially if I partake in occasional high risk activities."

In this article, I focus on whether gay men involved in HIV could ever imagine using PrEP. In my next article, I will focus on their concerns and hopes for PrEP. This article presents gay men’s opinions about PrEP. It does not claim to present facts about PrEP. As such, factual errors might be included in the opinions expressed, so check out the resources listed at the end of the article for more information about PrEP.

These are all gay men that I know, so they are mostly from Canada. Many people would have different answers, I imagine—gay men in other countries, gay men who are not involved in HIV, and people other than gay men. But since the guys I asked are more likely than most to know about PrEP, I was curious to know their thoughts.

I was quite amazed at the response—half of the 60 people I approached responded to my brief three question online survey, including 17 HIV-negative guys and 13 HIV-positive guys. I told them they could respond anonymously or let me know that they had responded to the survey. Among the 30 guys who responded, 19 agreed to have their names mentioned (see below). I have no way of knowing who wrote what unless they included identifying information, which in any case I have removed from this article.

Originally, I had grandiose plans of distilling their thoughts, outlining the key themes that emerged, and using a couple of quotes here and there to illustrate those themes. However, my plans changed once I read the responses. These guys were so articulate; I decided the best approach was to let them tell their stories in their own words. So this article is almost entirely made up of quotes. As far as I’m concerned, it reads like a storybook read to me by 30 guys I love and admire very much. I hope you agree.

 

Here is what I asked, and how guys responded.

My question to HIV-positive guys: “If PrEP had been available when you were HIV-negative, do you think you would have taken it? Why? Why not?”

 

The guys who responded were evenly split—half said yes, half said no. A couple of guys didn’t know. In fact, a few guys said that thinking back, it was really hard to know whether or not they would have taken PrEP.

 

“Yes. It could have prevented me from becoming infected.”

 

“Probably yes, given some of the risky sex I was having at different periods in my life.” 

 

“Since this was [over 20] years ago, I'm not sure. I was very successful with condom use at the time so I think it was a very different environment. If you changed the situation to today, I think (to the extent any long term survivor can imagine being HIV-negative) that I would use Truvada for PrEP periodically.”

 

“It is hard to look back and think ‘Oh, I would have done X or Y.’ How does anyone REALLY know? I would LIKE to think I would have considered it, especially since the time I seroconverted was in the context of a relationship where/when we stopped using condoms. We never discussed the fact that the condoms ‘disappeared’, but having had PrEP available, AND on my radar, it may have appealed to me—or at least gotten me thinking more about the absence of condoms from my sexual behaviour.”

Read the rest.

 

PrEP – What have I done to deserve this? (Part 3 of 3)

This is the third and final installment of a three-part series. Click here to read the first installment. Click here to read the second installment.

I’ve been told that I can look forward to a tremendous reduction in stress and anxiety about seroconverting. I look forward to that. We’ll see. 

bv Marc-André LeBlanc
Gatineau, Canada

On April 5, 2013 I took my first dose of Truvada as pre-exposure prophylaxis (PrEP). I won’t deny it. I’ve been feeling very conflicted about starting PrEP.

 

Why do I have access to Truvada when the majority of people who need antiretroviral medication to stay alive don’t have access? I got my hands on this bottle relatively easily. The social injustice is not lost on me. I don’t have relatively easy access to this medication because I deserve it more than anyone else.

So what HAVE I done to deserve access to PrEP? Well, a lot of it is sheer luck, actually.

•    Nearly every time I see the news, I am amazed at how lucky I am. I was born in Canada. Talk about winning the lottery. Out of 7 billion people, I am one of only 34 million people living in Canada. Trust me, it’s a great place to live!

•    I’ve been working in HIV for 20 years, including the last 10 years focussed on tracking biomedical HIV prevention research. This provides me with ongoing access to the latest information.

•    I make a good living. I can access healthcare relatively easily and generally for free or at a cost that has little impact on my standard of living.

•    I have a doctor. He’s young (My age. That’s young. Shut up.), gay, and sees a lot of people living with HIV in his practice. So talking to him about my sex life and about PrEP was not difficult. He keeps up to date on research. After a good discussion, he agreed to prescribe PrEP.

•    Not only do I live in Canada, but I live in Québec, the only province to have a universal public drug plan. As long as the drugs my doctor prescribes are on the provincial drug formulary, I am covered for most of the cost. I pay $500 into the drug plan annually, and PrEP will cost me less than $1,000/year on top of that. And if I ever need other drugs for any reason, I will not pay for them. Because $992/year ($82.66/month to be precise) is the most I would have to pay for all my drugs combined.

I’m not trying to be disingenuous. I know that beyond being lucky and privileged, I have access to PrEP because I’ve taken some very concrete steps as well. I did lots of introspection. I tried to reduce my risk as much as possible through other means. I did a lot of research. I actively sought out access. I make sure I’m very diligent about taking my pills.

I always have been very diligent about that. I take all my antibiotics when I need them. I take vitamins daily. When I was on antidepressants, I never missed a dose in 1.5 years. I follow advice from medical professionals to the letter. Case in point: I’ve needed physiotherapy twice. Both times, the conversation during my second visit went something like this:

Physiotherapist: Wow, you’re made remarkable progress in one week. I’ve never seen anyone progress so quickly with this type of injury. Which exercises did you do?
Me: All of them, like you showed me.
PT: You did ALL the exercise I gave you?! How often?
Me: Every day, like you told me.
PT: You did ALL your exercise EVERY day?! How many times a day?
Me: Twice, like you told me.
PT: You did ALL your exercises, EVERY day, TWICE a day?! I’ve never seen this in all my years of practice! No wonder you’re doing so well!

*SLAP* You’re at risk of HIV!

I might make jokes, but I don’t take this lightly.

Every morning when I wake up it’s the first thing I think about. That might stop after a while. But two weeks into taking PrEP, it’s the same thing. I wake up, and as I ponder about whether I want to go back to sleep again for a little longer, I can’t do it. I immediately think: when I get up I have to take my Truvada pill. Because I’m at risk of HIV.

Each and every time I open the cupboard and grab the bottle, I think: how is it possible that I am so lucky to have such easy access to this medication when millions of people who need it to stay alive don’t have access?

Who needs a coffee? I get a slap in my face every morning. Two of them in fact.

*SLAP* You’re at risk of HIV and STIs!


*SLAP* You’re one of the lucky few who has access to this medication and to this prevention option!

I’ve been told that I can look forward to a tremendous reduction in stress and anxiety about seroconverting. I look forward to that. We’ll see. I’m not there yet by any stretch. But at least I get some measure of comfort from knowing that I’m putting chances on my side by reducing my risk as much as I can in my current situation. Doing my best to stay healthy seems like the right thing to do to honour those who don’t have access to this drug.

***

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.
• 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.

PrEP – How did I end up here? [Part 2 of 3, by Marc-André LeBlanc]

bv Marc-André LeBlanc
Gatineau, Canada

• Multiple sex partners? Check

• History of STIs? Check

• Partners of unknown or HIV-positive status? Check

• Inconsistent condom use? Check

This is the second installment of a three-part series.
Click here to read the first installment. Click here for Part 3.

On April 5, 2013 I took my first dose of Truvada as pre-exposure prophylaxis (PrEP). How did I end up in this situation where I feel like I need PrEP? 

As I mentioned in my previous post, a look back at the phases of my sex life gave me some clues about why PrEP makes sense for me now. After more than 20 years of being sexually active, I only recently found myself veering away from perfect 100% condom use.

How did that happen?

Ironically, this is in part because I’ve been working in HIV for 20 years, including the last 10 years focussed on tracking biomedical HIV prevention research. I know what the research is telling us about HIV transmission. I know what proportion of new infections is driven by people who are undiagnosed. I know what undetectable viral load means for transmission risk.

I started serosorting, but not in the conventional sense. More and more, I’ve been dividing guys up into 3 categories.

1. The first category is small. With HIV-negative guys I know and completely trust, we arrive at a form of negotiated safety—if we have been tested for HIV and all STIs recently, and not yet had sex with others, we usually have condomless sex.

2. The second category has been steadily growing—positive guys. We have discussions about treatment, viral load, STIs and decide how to proceed from there. Sometimes without condoms.

3. The third category is basically everyone else—HIV unknown or undisclosed, and HIV-negative men I don’t know well. I consider guys from this third category as potentially being in the acute infection phase, whether they know it or not. This is the category of men with whom I am most adamant about condom use. All too often, their prevention strategy is dubious at best (e.g., “r u clean? how big r u? wanna bb?”). If I see another highly stigmatizing "disease free"/"no poz" message on an online profile, meant to be some kind of stand-alone, ill-informed HIV prevention strategy, I might reach through the screen and cyber-throttle someone.

So gradually, I’ve found myself feeling much less worried about having condomless sex with a positive guy after a conversation with him about treatment and viral load and STIs than about having condomless sex with a guy who says he is negative, but could be in the acute infection phase with sky-high viral load without even knowing it.

Paranoia? Rational, effective, evidence-based risk-reduction strategy? Both? You be the judge.

But let’s be honest. I also started “slipping up” more and more often because, well… sex feels better without condoms. *gasp* That’s right folks. Sex without condoms feels freaking amazing. You heard it here first.

So while I still maintained a relatively high rate of condom use, I found myself having condomless sex every once in a while. Of course, I also know how effective inconsistent condom use is over time (i.e., not very).

 

An illuminating peek inside the Little Black Book

Three years ago, I started to keep track of my sexual encounters in a proverbial little black book. (OK fine, it’s blue and has a Global Campaign for Microbicides logo and a Rectal Pride for Microbicides sticker on it. It’s super pretty and seemed appropriate). Every time I have sex, I write down what we did, what I know about my sex partner’s HIV status, and whether or not we use condoms. Yup, every time for 3 years. I do this partly so I have very accurate information at my fingertips to relay when I get tested for HIV and STIs. Partly so I have very accurate information at my fingertips when I start to worry. I can look at my list since my last tests and say: look, you had this many encounters, this is what you did with whom, this is how often you used condoms, and this is what you know about his HIV status. Sometimes that helps alleviate the occasional panic attack and insomnia. Sometimes.

I had never seen myself as being “high risk” for the first 20+ years of my sex life. But I’ve been working in HIV for 20 years. So I know the behavioural characteristics of “those people” at high risk. Armed with about 3 years of hard data about my own newly evolving behaviour (i.e., my stylish little blue book), I decided to look at it objectively.

• Multiple sex partners? Check

• History of STIs? Check

• Partners of unknown or HIV-positive status? Check

• Inconsistent condom use? Check

Well then. It’s hard to ignore what this spells.

I like to think I’m at least moderately intelligent. I know how HIV is transmitted. I know how effective condoms are.

I like to think I understand the consequences and the stakes. Yes, people living with HV are doing much better today. But I saw my dad die of AIDS in front of my eyes. I saw countless other friends, colleagues and clients become HIV-positive or die of AIDS. That leaves an impression, to say the least.

I like to think I’m a responsible person. I get tested frequently. I stay informed.

I like to think I have high self-efficacy. I have several years of experience using condoms consistently, and I am more often than not the one wearing the condom, so little to no negotiation is required.

I’m not depressed. I never drink. I don’t so drugs. My judgement is not clouded by any of those.

I’m not in denial. I know that the combination of inconsistent condom use, multiple partners, history of STIs and having partners of a different/unknown HIV status is a very strong predictor of seroconversion over the course of a few years.

If all of this doesn’t make me an ideal candidate for consistent condom use, I don’t know what more it would take, short of using Super Glue to permanently bond a condom to Mr. Happy.

Yet here I am.

So as a smart, responsible, well-informed, sexually active gay man with good self-efficacy and good access to healthcare and accurate information, I’ve come to the conclusion that PrEP makes sense for me at this point in my life. I don’t know how long this new “PrEP phase” will last. But I am glad it is available to me while I need 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.
• 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.

PrEP – Is this just a phase I’m going through? [Part 1 of 3]

bv Marc-André LeBlanc
Gatineau, Canada

This is the first installment of a three-part series. Click here for Part 2. Click here for Part 3.

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, 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.
• 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.