First Man To Contract HIV While On Daily PrEP Speaks Out: “I Stopped Using Condoms”

Last week, scientists revealed that a 43-year-old gay man had contracted a multi-drug resistant strain of the HIV virus despite adhering to a daily regimen of Truvada, (tenofovir/emtricitabine) as pre-exposure prophylaxis (PrEP).

That man, who has broken his silence in a new interview with POZ, is the first person to test HIV positive while adhering to a daily PrEP regimen.

Below are some excerpts from POZ’s interview with “Joe” — you can read the full interview here:

Did you have problems with side effects or adherence with the daily regimen?

My body tolerated it well. And I have an app on my phone called Mind Jogger that reminds you to do things. I programmed it so that between 11 a.m. and 1 p.m., it gives me 10 notifications to take my medication. My logic was that no matter what day it is or where I am, I will be awake between 11 and 1.

Did you remain on Truvada as a daily prophylaxis, or did you use it, as they say, during “seasons of risk”?

I was on it the entire time. A lot of people disco dose [take it only during risky periods] because of the cost factor. When I took it, in Canada, Truvada was prescribed off-label as PrEP, but my work benefits covered my medication so, for me, it was not a problem. And to be honest, I don’t believe in disco dosing because I think it’s better to maintain the same level of medication in the bloodstream.

Did PrEP change your condom habits?

Oh, yes, definitely. To be honest with you, I stopped using condoms after going on PrEP. I was such as big proponent of PrEP that if I was chatting with someone on a hookup site who wanted to use condoms, it was a deal-breaker for me. I was having sex to enjoy it. And if I was wearing a condom or the other person was wearing a condom, I wouldn’t enjoy it.

He explains how he initially learned of his diagnosis of HIV:

On May 4, I had the regular quarterly blood test for HIV and STIs [sexually transmitted infections] and kidney and liver function, and all that. On Friday, May 8, at 6 p.m. my doctor gives me a call at home and says, “Joe, your p24 antigen came back positive.”
I said, “OK, what does that mean?” And he goes, “You’re HIV positive.” And it was…it was a bit of a shock. I said, “That can’t be, there’s no way. Are you sure it’s not a false positive?” He said that in 90 percent of cases where the p24 antigen comes back positive, the person is HIV infected.

Blood tests pinpointed a timeframe when you contracted HIV. Did you have any interest in figuring out who likely had this virus, or in alerting him about it?

Here’s the story. He’s in a relationship and “discreet.” We met on bbrt [a bareback community], and he says he’s negative. I prefer to be with people who are positive and know it and are on meds—I’m on PrEP, you’re undetectable, the chances of transmission are like negative 10 percent—but I broke my rule with this guy. So it was with him, I think—it was a bit of a busy period. I reached out to him and he says, “Well, I’m not worried, I’m OK. But I’ll go see a doctor.” And I checked in with him again: “Have you gone? What are the results?” “Oh I’m really busy and haven’t had a chance.” I checked in again. “Oh, I’m out of town on work.” Checked again, and he stopped replying to me. To be honest, I gave up. I don’t need to be vindicated or have him say I’m sorry or whatever. I just wanted to let him know. It’s being socially responsible.

And now your case study is making global headlines. Have you been following the press and online discussions?

Normally, I’m involved, but I try to stay away from the social commentary regarding this announcement. There was someone, a Facebook friend, who made a blanket statement about, “Enjoy your AIDS, PrEPsters.” I don’t know if it comes from fear or hatred or whatever, but some people feel vindicated that PrEP is not 100 percent. And it’s the Internet, right? Everyone’s got an opinion. To be honest with you, I’ve been focused on work; I applied for a new position, and there are a lot of expected changes. It’s been good.

Why is it important to get this story out?

Because knowledge is power; the more we know, the better we’re prepared. PrEP’s a calculated risk. It’s important for people to know that there is the possibility as opposed to the fantasy that there have been no recorded infections on PrEP. At least now there is one, so it makes it more real. And I tell people, “It didn’t work for me, but I still think it’s great.” If I had to do it all over again, I would still go on PrEP. I just wouldn’t have sex with that specific person.

Finally, what did you think about the other big PrEP news from this week, that the Canadian government just approved Truvada as PrEP?

I was relieved. I thought, “Finally. It’s approved!” As PrEP becomes more mainstream, there will be more awareness. Doctors will know more. Patients will know more. Many of the myths will be dispelled. And more people will have smart, as well as safe, sex.

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