Man Who Contracted HIV While On PrEP Speaks Out.

We reported on February 25th that "man-taking-prep-daily-contracts-drug-resistant-hiv."  Now that man, "Joe," a 44-year-old man had been on PrEP for about two years before last month's diagnosis.  I am not sure what would be going through my mind, but in a recent interview with POZ , he answers many of the questions we all wanted to ask.  Here are some of those Q's and A's.

———————————————————————————–

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.”

Did PrEP alter your sexual behavior or attitudes?

Yes. I became more sexually liberated. It took away the fear. I mean, that’s really one of the reasons why people behave themselves [sexually]. It’s not because of morals or religion or society; it’s just the fear of getting sick—especially the fear of HIV. But once you’re on PrEP you’re more comfortable. You feel safer.

How would you describe your condom use before PrEP?

It was off and on, depending on the situation. I’m mostly a bottom, but if I was with someone I felt more at ease with, [we wouldn’t use condoms], but it was serosorting of course [having sex with someone of your same HIV status]. But I would say most of the time, it was with condoms.

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.” 

When we first spoke, you said that when you started PrEP you were in a relationship with an HIV-negative partner, but after 11 years that ended (his ex remains HIV negative today). You also you were taking antidepressants and this January was one of the few recent months you didn’t end up in the emergency room. What was going on in your life?

Last year was really horrible. In January, I went snowboarding at Whistler Pride, a big gay ski week. It’s a lot of fun—unless you fall down the mountain and get a concussion like I did. I was off work for about six weeks. When I went back, I started to develop stomach issues and it turned out I had Helicobacter pylori, a bacteria that causes stomach ulcers. It exists in about two thirds of the population, usually in people from third-world countries or who have visited third-world countries, so it could have been from my being born in Iraq or being a flight attendant. I went on a course of antibiotics and that was that. But I was still having stomach problems, so I went in for an endoscopy and colonoscopy, and found out my stomach muscle was getting paralyzed and stuck, something called gastroparesis. Basically, it wouldn’t digest food. I went on some other medications. Then in April, I broke my pinkie playing dodgeball. Like I said, last year was really horrible.

How are those conditions today?

They’re fine. I haven’t had any relapses.

————————————————————————————-

Those were just some of the questions asked Joe.  To read the full interview, head on over to POZ.

Were his answers above shocking? Honest? Same ones you would have?

 

h/t : lgbtqnation.com

7 thoughts on “Man Who Contracted HIV While On PrEP Speaks Out.”

  1. Is there any concern that

    Is there any concern that being on PreP when u get HIV will cause more drug resistant infections?  Our bodies naturally attack new medications that's why the meds work until they don't.  I spoke to an Infection Disease DR who warned me about this when I questioned going on it.

    • Truvada alone would not be

      Truvada alone would not be given as a treatment option post-infection. It it insufficient at keeping viral levels low and T-Cells high. It works well as PrEP for those not infected. It's efficacy rate at preventing infection is in the 90s as far as percentages go, which is equal to if not better than some vaccines.

      But if you become infected Truvada may still be good drug to take to keep your viral load low and T-Cells high, it will just likely be paired with at least one other drug. Or if your strain is not resistant to the one once-a-day pills like Atripla or Genvoya you'll likely be placed on one of those. You'll get multiple meds or cocktails if your virus has immunity to some of the drugs that are combined in those once-a-day pills. Your infection Disease Specialist can determine those things, and best course of treatment, with a simple blood test.

  2. Its refreshing to see how

    Its refreshing to see how honest he is about his reasons for PrEP. So many people make it like they're virgins just using PrEP in addition to condoms. While in all reality they're on it feeling invisible at bareback orgies.

  3. I feel really bad for this

    I feel really bad for this guy, but he didn't really use his brain when it came down to it. 

  4. Judgey McJudges around this

    Judgey McJudges around this case everywhere I read. Honestly, shut up. If anyone's sex lives were scrutinized with a fine comb most of us would have some explaining to do for engaging in high risk sexual activity. And if you're claiming you have sex in a full body hazmat suit 100% of the time, from your first sexual experience to your most recent…Fine. I think you're lying, but fine Felicia. Fine.

    I'm curious about the timeline. It seems possible he could have been infected with dormant or incubating HIV before he started PrEP.

    That his particular strain is somewhat drug resistant can be the result of two things.

    1.) The person who infected him was once on Truvada or similar drugs and discontinued treatment, allowing his virus to adapt and develop a resistance. This new person then gets exposed to that drug resistant form of HIV.

    2.) There could be multiple infection points in the timeline. It is possible a drug resistant strain developed within his body as a result to two strains of HIV combining DNA to form a stronger infection. Perhaps first exposure was pre-PrEP and the second exposure was after. A prior undetected infection would have reduced the efficacy of PrEP leaving him vulnerable to a secondary infection, or what he believes to be the initial infection.

    Regardless, stop being bitches. We do not show this kind of empathy gap for other diseases that are the result of lifestyle choices. Heart disease, diabetes, morbid obesity…We don't tell these sick people "You got what you deserved fatty." Liver failure, kidney failure…We don't say "You got what you deserved you stupid drunk."

    But when it comes to sex and disease. We almost instinctively vomit up the sex shame we were taught and raised with. We were all socialized in a heterosexual world, to be future heteros. We broke from that norm and developed/embraced an alternate sexual identity. Why then are we still carrying around the heterosexual moralizing on sex and dumping it on people within our community? In case you haven't noticed, heterosexual infidelity and divorce rates are rather high. I think we can stop using them as a moral compass for our sex lives. They have their own garbage to sort through.

    In the meantime, remember the greater human norm that predates heterosexual morals about sex. When someone becomes ill, lend compassion not blame.

    (And No, I am not suggesting homosexuality is a "lifestyle choice." It exists in nature in nearly 2000 species and there are multiple evolutionary and biological perspectives explaining why the trait is useful and has not been naturally selected against. But having casual sex, using the hook up apps, barebacking etc are the lifestyle choices I'm referring to. And I do so without passing judgment on them or those who practice sex on those terms. These are aren't things foreign to my life. I'm a bit older so it's more of my past, but I've been there).

  5. This guy is a complete IDIOT!

    This guy is a complete IDIOT! No comdom? What about other STDs besides hiv? Now God only knows who he's given it to when he didn't know and having unprotected sex. What an IDIOT!

  6. Im very sorry to hear his

    Im very sorry to hear his struggles.I cant past judgement on anybodys choices,so I just hope he turns ok and wish him well.

Leave a Comment