Len Tooley (© Len Tooley)
Len Tooley is an HIV-negative gay man who is taking pre-exposure prophylaxis (PrEP): he takes HIV medication to protect himself from infection. In the third part of his interview with John McCullagh from the Canadian HIV portal PositiveLite.com is about criticising men like him, the reasons for his step into the public eye and his advice to others who are also considering PrEP.
(Original: Len Tooley on PrEP Part Three, 27.2.2013; Many thanks to John and Len for the permission to publish!)
Len, I would like to ask you to say something about the criticism of PrEP. Not everyone thinks it's right that HIV-negative men like you should be prescribed HIV medication - some people are quite adamant that you should use condoms to protect yourself and your partner. The freelance journalist David Duran, for example, in his Article "Truvada Whores?" in the Huffington Post written: Having unprotected sex and willingly taking that risk just because you're doing an easy-to-take preventative treatment is just plain stupid.
My first reaction is: Wow! Someone's really condemning and denouncing. Maybe I should get a T-shirt labelled "Truvada whore"? Sticks and stones break my bones, but words bring no pain ...
Unfortunately, my condom use is not perfect
But seriously: I wish I could be one hundred per cent sure that I wouldn't be infected with HIV even if I used condoms for every single anal intercourse. And I also wish condoms were made of a magical material that you can't feel, smell or see. But I also know that not all my wishes will come true ...
Unfortunately, I have to admit to myself that I don't use condoms 100 per cent of the time. And because I've been working in HIV counselling and testing for a long time, I know that many other men aren't perfect either. Not because we don't try, but because we're not robots. Sometimes condoms are not an invisible barrier without any impact on the quality of my sex life. They are not easy to use and, for me at least, they make sex much more complicated. I wish it were different, but that's the way it is.
I also know that I would hardly be able to enjoy sex if I only had to think about whether I was really doing everything I could to protect myself from HIV or other sexually transmitted infections. If I was only allowed to do risk-free things or things with a negligible risk, I would have to put a rubber on my sex partner even if I just wanted to give him a blow job. The risk of contracting HIV while giving a blow job is very low, but when it comes to sex during an epidemic, "low risk" does not mean "no risk".
I've had to tell people their positive HIV test result who were sure they hadn't had unprotected anal sex and who could name the exact partner they had given a blow job to before they developed the symptoms of a recent HIV infection. Their stories really stuck with me because they showed me that in my world "low risk" doesn't mean "zero risk". But I don't want to give a blow job to someone who has a rubber over it. This means that although the risk of oral sex is statistically very low, I could still get infected with HIV at some point. That made me rethink my relationship with risk and made me realise that I even have to be careful when giving a blow job because I could be one of those statistical cases. I have come across such cases, so I know they exist. This constant fear of HIV and this stress had an extremely negative impact on my life, being present on every date and every time I had sex.
Dave R., a regular contributor to PositiveLite.com, is concerned, among other things, about possible Resistance to a Truvada-PrEPAfter all, Truvada is one of the most frequently prescribed antiretroviral drugs.
Possible resistance is indeed a problem. If I ever test positive, I want to take the medication that is best tolerated, and Truvada is one of them. But I have decided that I have to live with this consequence and this risk. This is more of an incentive for me to be as careful as possible with my risk management, to get tested regularly for HIV and to follow my intake schedule as closely as possible.
Resistance is a risk, but I can live with that
In this context, I would like to emphasise once again that it really isn't easy to take my HIV medication at the same time every day. It really takes a firm resolution. But I'm very motivated because I want to stay HIV-negative. I'm not big on routines, I'll admit that, but it's still easier for me to take my blue pill at the same time every day than to have to live with constant fear and shame because I'm not the perfect condom user. I want to stay HIV-negative, so I adapt my life so that I can follow the instructions to the best of my ability.
Thank you for your response to the criticism of negative men taking PrEP. Here in Canada, however, it's not just people from our own community who express these concerns. Experts and practitioners are also divided on PrEP and the principle of treatment as prevention and argue about their effectiveness, even though both issues were among the most important topics at the 2012 International AIDS Conference. Why is Canada so divided on these issues?
It's hard to say. Probably nobody wants to take the first step and send out messages based on what they consider to be insufficient evidence. Scientists, politicians and practitioners from the healthcare system obviously consider the introduction of a new method that does not offer 100 per cent certainty to be dangerous.
But science never offers one hundred per cent certainty. Like my "co-PrEPer" Jake Sobo correctly noted in his blog the gay men who invented "safer sex" (by using condoms) in order not to abstain from sex completely also had no proof that condoms offer 100 per cent protection. In my situation, I can only be 100 per cent sure that I will never contract HIV if I am completely abstinent. However, I don't have the same expectations of safety as some scientists, politicians or practitioners - I can't afford that luxury.
I understand that the PrEP sceptics see their hesitation as a conservative, cautious and appropriate approach. But for me, the available data is conclusive enough. I trust that PrEP, when used consistently, significantly increases my chances of not contracting HIV.
And one more note: some positive men have struggled with terribly severe Truvada side effects. I spoke to a few of them, and they were very much against me taking the drug without "really" needing it. I can understand where these strong negative feelings come from, but I wanted to decide for myself how to deal with it if the worst came to the worst. And as it turns out, I haven't had any side effects at all, at least not so far. The only real effect of PrEP so far is that I feel a bit less guilty and have a bit more fun during sex.
Why did you decide to go public with your decision in favour of PrEP?
I talk to quite a few gay men both at work and in my private life. From these conversations, I know how many of us try to use condoms consistently. And I also know that the majority of guys don't know about PrEP as an option at all. I had the chance and privilege to look into PrEP and choose it as the right path for me, and I want other men in a similar situation to be able to look into it as well. I just think it's time we had this discussion.
What advice would you give to others who are considering whether PrEP could also be a suitable HIV prevention strategy for them?
First, even though there are no official Canadian guidelines and Truvada is not approved for this use in Canada, it is not illegal to prescribe PrEP to a patient. Doctors have the freedom to use medication "off-label", i.e. outside of the actual authorisation, if they come to the conclusion based on their experience or their medical conclusions that this is in the best interest of their patient.
Secondly, I would like to make it very clear that I am aware of how much I am going out on a limb with PrEP. I know that this strategy does not protect me 100 per cent from HIV infection, and I keep this in mind every time I make a safer sex decision. It's impossible to quantify exactly how high my risk is, but for me and others who have sex during an epidemic, risk-free sex is more of a dream than a reality.
Thirdly, I take PrEP every day now, but there could be other options in the future. In Montreal, for example, the PrEp study IPERGAY in which the "intermittent", i.e. temporary, intake is investigated. This means that you start taking the pill one day before you are likely to have "risky sex", continue on the days when you have "risky sex" and then take a pill every day for a further two days. Other researchers are investigating a form of PrEP that is administered via a three-month depot injection so that the substance is slowly released into the blood. The PrEP of the future could therefore look very different to the PrEP I take today.
And last but not least it is important to me that I am just one person with one story. Because of my education, my job, my knowledge and ability to advocate for my own interests, I have had the special privilege of access to PrEP - and also because I am a white, gay, college-educated man. I'm grateful that I get PrEP because of all of these factors. But it's a problem that others don't have access to this information - and even if they did, they might not have access to this prevention tool that works for them too.
I have access to PrEP, many others don't. That's not fair!
My story is another example of white gay men who have access to the latest technology and information, adequate healthcare, the ability and will to advocate for their own interests, and many other privileges. It is unfair that most gay, bisexual, inter* and trans* people have to live in healthcare systems where there is no understanding of their HIV prevention needs (let alone their wider health needs), where PrEP is completely unknown, and where there are no GPs - or none with whom they can talk openly about their sexual or gender orientation. Many of us also don't have access to health insurance, not even to cover the cost of very simple, inexpensive medications that make our lives easier. This is especially true for those in our scene who do not have legal residency status. PrEP is just a small piece of a big puzzle that our community - HIV-positive and HIV-negative people together - must solve.
Thanks for the interview, Len!
You're welcome, John!
Part 1 of the interview with Len Tooley can be found herethe second part here.
