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.
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!