Len Tooley is a relatively young, HIV-negative gay guy who works in downtown Toronto as a gay men’s health promoter and an HIV educator, tester and counsellor. As a way of helping him stay HIV-negative, his family doctor prescribed him Truvada as pre-exposure prophylaxis (PrEP). 

In the first part of his interview with me, which we published two weeks ago, Len talked about what motivated him to go on PrEP. Last week he discussed the conversations he had with his family doctor about PrEP, his experience of actually taking Truvada every day and how he feels about asking his drug plan to cover its cost. 

This week, in the third and final part of our interview, Len responds to those people in the gay and HIV communities who are critical of negative guys like him who decide PrEP is right for them, about why he decided to talk publicly about being on PrEP and what he would say to others who are considering this option as a way of staying HIV-negative.

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John: Len, I’d like to start off this third part of our interview by asking you to to respond to some of the criticisms we’ve heard about PrEP.

As you know, not everyone thinks that HIV-negative guys like you should be prescribed anti-HIV drugs but should, rather, depend on condoms to keep them and their partners safe.  Some people hold very strong views about it indeed. For example, freelance journalist David Duran has written, in an article for the Huffington Post entitled Truvada Whores, that “having unprotected sex and willingly taking that risk because you're on an easy, preemptive treatment regime is just plain stupid”. 

Len: My first reaction is - Wow! That’s a lot of judgment and shaming to respond to. Maybe I should get a t-shirt made that says “Truvada Whore” on it.  Sticks and stones may break my bones…. 

Seriously though, I wish that I could be 100% certain that even if I used a condom every single time I had anal sex I wouldn’t get HIV. I also wish that condoms could be made out of a magical material that didn’t have any texture, scent, colour or substance – but I know that not all my wishes can come true! 

But I’ve had to admit to myself that I’m not perfect at using condoms 100% of the time, and, because I’ve been working as an HIV tester and counsellor for so long, I know that a lot of gay men that I provide HIV testing to aren’t perfect either. And that’s not because we’re not trying, it’s because we’re not robots. I can also admit that condoms aren’t some invisible barrier that doesn’t impact the quality of my sex life at all. Condoms aren’t easy to use, and for me (but not for everyone), they make sex a lot more difficult. I wish it wasn’t so, but alas, it is. 

I also know that if I were to do every single thing I could possibly do to prevent HIV and STI infection I would not be enjoying sex very much at all. If I were to do only things that were “no risk” or “negligible risk” that would mean, for example, that I would have to use a condom even if I was giving a blowjob to a guy I was on a date with. It’s low risk to get HIV from giving oral sex, but when you’re having sex in an epidemic, low risk really doesn’t mean no risk. I’ve had to give HIV-positive results to guys who were certain they hadn’t had any unprotected anal sex, some of whom could even pinpoint the exact partner and blow job they’d given that had led to seroconversion symptoms shortly after. Their stories have really stuck with me, because they taught me that for guys in my world low risk really doesn’t mean no risk. I don’t really want to give blowjobs with condoms. So while statistically the risk is low for oral sex, I know that I could still end up with HIV anyway. This really made me re-think my relationship to risk and where I stood on things. And it also makes me aware that even if I’m only giving blowjobs, I still have to be vigilant about HIV because I could be one of those guys – I’ve seen it, so I know it isn’t impossible. The stress and anxiety that I was living with around getting HIV really impacted my life and it was something that affected every experience I had with other guys I was dating and/or having sex with. 

John: One of our regular contributors on PositiveLite.com, Dave R, worries, among other things, about possible resistance to Truvada, one of the most highly prescribed antiretroviral medications, developing down the road due it being used as PrEP. 

Len: The question of drug resistance is definitely a challenging one. If I ever were to test positive, I would want to be able to take the most tolerable drugs possible, and Truvada is one of those drugs. I decided that this is a consequence that I will have to deal with, and a risk that I will have to take. If anything it gives me all the more incentive to manage my risk for HIV as carefully as possible, to get regular HIV tests done, and to stick to my medication schedule as closely as possible. 

I guess the only other thing I would say again (I know I said it before) is that taking an HIV medication every day at the same time without fail is not a simple task. It really takes a commitment. But I’m really motivated to do so, because I do indeed hope to stay HIV-negative. I’m not great with routine, I’ll admit, but for me taking a blue pill at the same time every day, while difficult, is much easier than dealing with the anxiety and guilt of not being a perfect condom user. I want to stay HIV-negative, so I make the adjustments necessary to adhere to the prescription as best as possible. 

John: That’s very helpful, Len, to hear your responses to those who criticize negative guys on PrEP. Yet here in Canada, it’s not just community members who have expressed these kinds of concerns. Professionals, too, are undeniably divided about PrEP and treatment as prevention generally, arguing over whether they work or not, even though both were among the major focuses of last year’s International AIDS Conference. Why is Canada such a divided country on these things, do you think? 

Len: That’s a really difficult question to answer, John. I think that, as should be expected, nobody wants to jump the gun and start making decisions based on what they feel is not complete evidence. So scientists, politicians, and healthcare professionals may be worried that implementing a new technology, that we aren’t 100% certain of, is a dangerous proposition. 

But science will never be perfect. And as a fellow “PrEPer” Jake Sobo noted in his blog, back in the day when gay men took it upon themselves to have “safer” sex (by using condoms) rather than have no sex at all, they were doing so without evidence that condoms were 100% effective. I’m in a situation where I can’t be 100% sure I will never get HIV unless I’m abstinent, so I don’t have the same standards as scientists, politicians or healthcare professionals might – since I don’t have the luxury to. 

I understand that those who are hesitant about PrEP feel they are taking the most conservative, cautious and appropriate actions. But at the same time I feel that for me, the evidence that exists is good enough to be confident that if I do it right, PrEP can have a significant impact on my chances of not getting HIV. 

On another note, there are a number of poz guys that have taken Truvada and experienced horrible side effects of the medication. I’ve spoken to a few of them who had very strong (negative) feelings about the idea that I would take the drug if I don’t actually “need” it. I can understand where they’re coming from, for sure, but I felt I needed to see for myself if such would be the case. It turns out that for me, there weren’t any side effects – at least there haven’t been any so far. The only real effect PrEP has had so far is to allow me to be a little less guilty, feel a little bit less shame, and be a little more confident, about the sex I have. 

John: Why did you decide to talk publicly about your decision to go on PrEP? 

Len: John, I talk to a lot of gay men both through my work doing HIV testing but also socially. So I know how many of us struggle with being – or trying to be – perfect condom users. I also know that the majority of guys simply don’t know that PrEP is even a possibility, period. If I had the opportunity and privilege to read and learn about PrEP and decide if it was right for me, I felt that other guys in similar situations should have the ability to make their minds up too. I guess I just felt that it’s time we have this discussion. 

John: What would you say to other guys who are considering PrEP as part of their strategy to prevent getting HIV? 

Len: Firstly, while there are no official Canadian guidelines and even though Truvada has not been “approved” for this use in Canada, it is not illegal for anyone’s doctor to prescribe PrEP. Doctors have the freedom to prescribe drugs “off-label” if, through experience or deduction, they feel it to be in the best interests of the patient. 

Secondly, I want to make it very clear that I have gone out on a limb by seeking out and taking PrEP. I’m aware that this strategy might not completely insure me against getting HIV, and I keep this in mind with every safer sex decision I make. It’s impossible to know exactly how much of a ‘risk’ I’m taking, but for someone like myself who is having sex in an epidemic, sex without risk is more of a dream than a reality. 

Thirdly, while I am taking PrEP every single day, there might be other options in the future. For instance there is one study taking place in Canada right now that’s looking at PrEP called the IPERGAY Trial and it’s centred in Montreal. They are testing the possibility that perhaps PrEP can be taken “intermittently.” In this study, this means starting one day before you might be having ‘risky’ sex, every day while you are having ‘risky’ sex, and then for two days afterward. Other researchers are studying a form of PrEP that can be given as an injection that you get every three months, that slowly releases the drug in your body over time. So the PrEP I am using isn’t necessarily what PrEP will look like in the future. 

And last but not least, it’s important to recognize that I’m only one person with one story. That being said, I have had a unique privilege to access PrEP because of my education, occupation, knowledge, and ability to self-advocate. I’m also a white, gay guy with a university education. While I’m thankful that these have all led me to having access to PrEP, it is problematic that others don’t have access to the same information, and even if they had, they may not be able to access a prevention tool that works for them. 

My story is yet another example of white, gay guys having access to the newest technologies and information, appropriate healthcare, ability/expectation to self advocate, and so many other privileges. It is an injustice that most gay, bi and queer men, cisgendered and transgendered, are living with a healthcare system that doesn’t understand their HIV prevention needs (not to mention their larger healthcare needs), have never heard of PrEP, and don’t have family doctors. Or if they do have family doctors, they don’t feel safe disclosing their sexual and gender orientations to their doctors. And many of us don’t have access to drug plans for even low-cost medications that can make our lives better. This is especially true for the queer folks in our community who don’t have legal status and are really struggling because of it. (No One is Illegal — Toronto is a great group of people working to change that). PrEP is only one small piece of a larger puzzle that our community — positive and negative — has to tackle. 

John: Thank you so much, Len, for sharing your PrEP story with us. 

Len: My pleasure, John!  

You can read the first part of Len’s interview here and the second part here.  

Len Tooley is a 31-year old, sexually active, HIV-negative gay guy who lives in downtown Toronto, where he works as a gay men's health promoter, HIV educator, tester and counsellor. As a way of helping him stay HIV-negative, his family doctor has prescribed him Truvada as a pre-exposure prophylaxis (PrEP). 

In the first part of his interview with me, which we published last week, Len and I talked about what motivated his decision to go on PrEP. This week, he discusses the conversations he had with his family doctor about PrEP, his experience of actually taking Truvada every day and how he feels about asking his drug insurance plan to cover its cost.

****** 

John: Len, as you said last week in the first part of our interview, PrEP has been approved for use in the U.S. However Health Canada hasn’t yet followed suit. As I said in my introduction to this series of interviews, though, some physicians in Canada are prescribing it “off-label” for that purpose. How easy was it for you to satisfy your family doctor that it was okay for him to prescribe it for you? 

Len: To be honest, John, I was in a very unique situation that facilitated the process. First of all, I actually have a family doctor – and many people don’t. Secondly, he’s not only a gay family physician but he also has a huge number of HIV-positive patients. I’m lucky to be in this position because I’ve been volunteering and working in the HIV sector for a long time, and eventually found this doctor through friends. So my doctor already knew about PrEP; I didn’t need to educate him about the research showing its effectiveness. 

It’s also my job to know a lot about the science and real-world implications of PrEP, and through my work I’ve read a great deal about many aspects of PrEP, so I had a good idea about what I was getting into. I was prepared to answer any questions he had, and I knew that I was a good candidate for it. 

John: What were some of the questions your doctor had for you? 

Len: It took about four appointments for me to actually get the prescription from my doctor. The first time I mentioned the idea he told me that before we considered it, we’d have to have a lengthy discussion about what was going through my mind when I decided not to use condoms. I told him that I wished it was that simple (I’m an HIV counsellor after all), that it wasn’t as simple as a ‘yes or no’ decision, and that I could guarantee him I was trying my absolute hardest to have perfectly safe sex. I just wasn’t succeeding perfectly. 

At the second appointment (I was there for something else) I again brought up the idea of PrEP. This time he was still a bit hesitant, and told me that if he was going to prescribe PrEP I was going to have to get blood tests to test my kidney and liver functions and make sure I was HIV-negative, and then, depending on those results, we could talk about it more. I agreed, he gave me the test requisition, and that day I went to a lab and got my blood work done. 

Once I knew my blood work results had arrived, I scheduled another appointment and saw my doctor. He confirmed that I was still HIV-negative and that all my kidney and liver function tests were okay. I was pretty nervous and excited. He asked me what I’d do if I experienced the side effects of the medication. I told him that I knew that only about 5% of people in studies of the drug had reported side effects, so it wasn’t too likely, but that if I did have those side effects I’d reconsider staying on it if they didn’t go away and became intolerable. Then I told him that I knew there could be longer-term side effects, but that right now it was probably better for me to go on Truvada temporarily while I feel I’m at risk for HIV, than get HIV and have to take that drug, or other drugs, for the rest of my life. 

John: Was your doctor satisfied with your answers? 

Len: Yes, because he turned to his computer, pressed a few buttons, and his printer started whirring. He took the print-out (my prescription) and handed it to me and reminded me that even though I was taking PrEP I still needed to use condoms. 

John: When did you start taking Truvada as PrEP? 

Len: I took it the day before I started my winter holidays! So, mid-December. I wanted to start at this time just in case I noticed side effects, so I had some time to relax and deal with anything that may come. 

John: And did you experience any side effects? 

Len: You know what, John, I haven’t. At least none that I’ve noticed. It’s interesting, though, because I was so prepared for side effects that I almost convinced myself I was having some. I initially incorrectly thought that Truvada could cause really vivid dreams, so when I had a few intense dreams shortly into starting the medication I thought it must be a side effect. I learned later though that Truvada doesn’t cause vivid dreams, and that it was just a coincidence. I think I’d convinced myself I was experiencing them because I was expecting to notice at least some side effects! 

I’m about to go to the lab to get another blood test so that my doctor can see if my liver and kidneys are still working well, so I can’t speak to the “unseen” side effects. But I feel totally fine. 

John: That’s good to hear, Len. Certainly, the anti-HIV drugs that we have today are more easily tolerated than previous generations of such drugs. But being on PrEP is not as simple as popping a pill every day, is it? 

Len: It is, and it isn’t. To be honest, “popping a pill every day” is not as simple as it sounds. I know that for PrEP to be its most effective, you not only have to take it every day but every day at exactly the same time. Otherwise the levels of the drug in your body fluctuate too much and you can be more vulnerable to HIV infection. This means that no matter what I’m doing – in a meeting, at my computer, on my bike, whatever – every day at the same time I need to have my pill on me and remember to take it. Just the other day I realized that I had left my pill at home (I was at work). It was a stressful moment! I had to bike home as fast as I could to make sure I was able to take my pill. 

John: I’ve had those panic moments, too, when I forgot to take my meds with me when I left home in the morning. Clearly, it’s not as straightforward as some may think. You also need to get regular blood work done, don’t you? 

Len: Yes.  Moving forward I know that I’ll need to get blood tests every three months to make sure my liver and kidneys are functioning well and also to confirm I’m still HIV-negative. 

John: Why do you need to have repeated HIV tests if you’re on anti-HIV meds? 

Len: Because if I do happen to contract HIV while I’m on PrEP (which I feel is not too likely), the virus can quickly adapt and become resistant to the drugs I’m taking. Then they might be of no benefit to me as a drug I can take to manage the infection. So regular HIV tests are important to help prevent that from happening. 

John: On top of which, a month’s supply of Truvada is expensive! 

Len: You’re telling me! Truvada is expensive. Maddeningly so, to be honest. My eyes almost popped out of my head when I realized that it costs $871.21 each month. I’m very, very lucky to have drug coverage, and Truvada is included. If I didn’t have access to a drug plan, I’d never be able to afford the drug on my own. 

John: How do you feel about the cost of a month’s supply of Truvada and asking your drug plan to cover it?  

Len: John, I’ve struggled a lot with that question. Am I worth $871.21 per month? Or rather than me, is me staying HIV-negative worth $871.21 per month? What does it mean to put a price on your security of mind and long-term health? It was a struggle. But there were a few things that led me to decide that it was worth it. 

First of all, this is the basic concept behind drug coverage. Everyone pays a little bit into a larger pool regardless of their health status, so that when people need a prescription they have access to it. So I’ve been paying into drug plans for a long time, in case I would need access to a certain drug. And my doctor and I agreed that in order to protect my health, this drug was important. That’s what drug plans are for. Other people might use their drug plans to prevent complications of atherosclerosis or high cholesterol, or high blood pressure. Or to prevent heart burn. The list goes on and on. I didn’t feel that preventing HIV infection was really all that different. 

The second realization I had was that no matter which way you look at it, it would always be less expensive for everyone for me to stay HIV-negative than for me to become HIV-positive. Truvada is one prescription (comprised of two anti-HIV drugs), and that’s it. If I were to get HIV, I would have to take at least one other HIV drug on top of that. And this often starts a chain reaction of other medications and vitamins to help ensure overall health. I felt that the cost to everyone (including myself) for PrEP now was probably worth preventing the long-term costs that would come with getting HIV. 

Next week, in the third and final part of his interview with PositiveLite.com, Len responds to critics of HIV-negative guys like him who decide that PrEP is right for them and why he decided to talk publicly about being one of those negative guys on PrEP. 

You can read the first part of Len’s interview here.

In July 2012, the U.S. Food and Drug Administration (FDA) approved the use of Truvada (a fixed dose combination in one tablet of emtricitabine and tenofovir) to reduce the risk of HIV infection in uninfected individuals who are at high risk of HIV infection and who may engage in sexual activity with HIV-infected partners. This use of an anti-HIV drug to prevent infection is known as pre-exposure prophylaxis (PrEP). 

PrEP is considered by most observers to be a major breakthrough in the war against HIV transmission. In Canada, however, there’s no indication that we’ll follow the American lead any time soon. Experts, and indeed many in the HIV community, argue about the desirability of doing so. 

However, some Canadian physicians are already prescribing Truvada “off-label” as PrEP for some of their patients. Len Tooley is one patient of such a physician. He agreed to talk to PositiveLite.com about his decision to go on PrEP. 

In this series of three interviews, Len and I talk about his decision to access PrEP, his experience starting to take PrEP and how he responds to critics of negative guys like him who decide that PrEP is right for them. 

******* 

John McCullagh: Len, thanks for agreeing to talk with PositiveLite.com about your decision to go on PrEP. Before we get started, can you tell us a little bit about yourself? 

Len Tooley: Sure, John. I’m a 31-year-old queer guy who lives, loves, cooks, cycles, and works in downtown Toronto. I also work professionally in the HIV sector as an HIV-negative guy. In that regard I work as the coordinator of community health promotion programming at CATIE, Canada’s national HIV and Hepatitis C knowledge broker. At CATIE I coordinate a number of projects related to gay men’s sexual health. In my spare time – if you could call it that — I also work part-time as an HIV and STI tester and counsellor through Hassle Free Clinic, a sexual health clinic in downtown Toronto. 

I mention what I do professionally because it’s given me the opportunity to learn a huge amount about HIV and gay men’s health that has really informed my decision to access PrEP. That being said, I should make it clear that I decided to do this interview with you as an individual telling my own story – I’m not speaking on behalf of either organization but rather as someone who is affected by HIV. 

John: Thank you for that clarification, Len. In that regard, I should also mention that I’m a member of CATIE’s board of directors. So let’s start with the obvious question: Why did you make the decision to go on PrEP? 

Len: First and foremost, John, to prevent HIV infection. I have a tricky relationship with HIV. I know that given the proper treatment, medical care and social supports it has become a pretty manageable illness that doesn't have to drastically change someone's life. Of course, that's not at all to say that being HIV-positive is easy or without complications, but it is different from even a decade ago. By different I mean in terms of the treatments available and long-term health outcomes — especially if the infection is caught and treated early. So, while I know that getting HIV doesn’t have to be the end of the world, I also know that it’s probably easier and better for my body overall to stay HIV-negative. 

As I mentioned, I’m a relatively young, sexually active queer guy who has sex with gay men. And I'm doing so in downtown Toronto, which has the highest prevalence of HIV among gay men of any urban centre in Canada — as high as 23% according to the best sources we have to date. To me this means that it's almost certain that I have had, and will have, sex with HIV-positive guys. As I've learned through providing HIV testing, and as more and more evidence is showing us, when you’re having sex in an HIV epidemic almost everything you do sexually — even low risk activities like giving oral sex without a condom — has an added risk for HIV infection. 

John: “Having sex in an epidemic”. That’s an interesting way of expressing the risk we gay guys run when we have sex. Can you talk a bit more about that? 

Len: Sure. One of the main reasons I say that is because of the way we know HIV moves among men who have sex with men (MSM). Studies show that anywhere from 50-75% of new HIV infections among MSM in Canada every year are driven by people whose HIV infection is also recent (what we call early or acute HIV infection). That's because when someone is newly infected with HIV they're less likely to know about their status. At the same time, they have the highest levels of the HIV virus in their body fluids because their body has not yet developed any ability to control the virus at all. 

So I know that even if the guy I'm having sex with says he’s HIV negative, there’s always a chance that he's not only positive, but that he also recently got HIV so he’s very likely to pass it on as well. It's in these 'perfect storm' scenarios that lower-risk activities (which, we must remember, are not 'no risk' activities) are much more likely to enable HIV transmission. In other words I know that even if I’m having 'low-risk' sex, I’m more likely to get HIV than most people. 

John: For almost thirty years now, most gay men have known that the most reliable way to prevent HIV transmission, even in an epidemic, is for us to wear condoms, at least when we have anal sex. So why did you decide to take PrEP too? Isn’t this a little like wearing a belt and suspenders? 

Len: Ha! To be honest with you, John, I’m not perfect – even if I wish I was. And I have to admit, I haven’t had perfect condom use throughout my life. I’ve managed to stay HIV-negative for quite a while, but this was partly a combination of “responsible” condom use and – when “not-so-responsible” – luck. Those moments when I had done something that I knew might put me at higher risk often led to a lot of anxiety. Not constant, overwhelming anxiety, but one that prevented me from feeling good (meaning, guilt free and shameless) about the awesome sex that I had had. 

John: So taking PrEP would give you added protection from HIV on those occasions when you might find yourself in such a situation? 

Len: Exactly. Working in the HIV sector I’m fortunate enough to be aware of the newest advancements and research going into HIV treatment and prevention. I’d been reading about PrEP and how, even if it’s not a ‘guarantee,’ it’s been shown to be quite effective. But it hasn’t been approved in Canada so it seemed like an impossible, or at least unlikely, tool. Early last November, during one of my more anxiety-filled days thinking about what I might have done since my last HIV test that might have exposed me (even though “I should know better”), I thought – wouldn’t it be great to have PrEP? And then I realized it was totally possible. That all I needed to do was to convince my doctor to prescribe me the drug. My confidence was bolstered by the fact that the U.S. FDA has already developed guidelines for prescribing PrEP to gay men. I read a really helpful resource by Project Inform that helped me make the decision too. 

But beyond my own risk, there’s another set of reasons for me to choose to access PrEP: the positive guys in my life that I have had, or will have, relationships and/or sex with. From doing testing and knowing a lot of positive guys, I know that for many of them passing HIV on to someone they’re having sex with is something they want to avoid at all costs. Sometimes this leads them to only dating or having sex with other poz guys. For me, PrEP is a way that I can not only take responsibility for my own sexual health (and the sexual health of my community), but it’s also something I can do to help reduce the fears and anxieties that some poz guys have around transmitting HIV to someone else. 

I also understand that it can be really hard for some poz guys to disclose their status to negative guys, and I hope that my being on PrEP can make those guys feel more comfortable disclosing their status to me. I also hope to help create an opportunity for more honest and open dialogue about our safer sex decisions. 

Next week, in part two of this interview, Len talks about the conversations he and his family doctor had about going on PrEP and his experience of actually taking Truvada as a way to help him stay HIV-negative.