Len Tooley, an HIV-negative guy on pre-exposure prophylaxis, works as a gay men's health promoter, HIV educator, tester and counsellor. In this second of three interviews, he talks about conversations with his doctor about PrEP and about being on it.
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 and the third part here.
This article was originally featured on PositiveLite.com.