Man Who Got HIV While On Daily PrEP Shares Story, Still Believes In The Drug

For the first time, researchers have documented a case in which an individual taking Truvada daily as a preventative measure from contracting HIV has contracted a multi-drug resistant strain of the virus.

That man — 44-year-old gay-identifying “Joe” — had been on PrEP for two years before contracting HIV.

He spoke with POZ about his experience, including making international headlines after his diagnosis.

Below are some excerpts from that interview — head here to read the full article:

On how he reacted to taking the pill:

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.

On his adherence to the daily regimen:

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.

On whether PrEP affected his condom usage:

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.

How he initially learned of his diagnosis of HIV, later explained as a rare strain of the virus that is resistant to multiple drugs:

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.

On the man he thinks gave him the virus:

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.

On his involvement with the flurry of press:

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.

Takeaways from his experience and why he wanted to share his story:

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.

On the news that Canada recently 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.

To read the full interview, head to POZ.