At CROI, the world's most important HIV medical conference, the first well-documented case of someone contracting HIV despite taking pre-exposure prophylaxis (pre-exposure prophylaxis to prevent HIV infection) was presented at the end of February. Trenton Straube spoke to the "case" - who only wants to be called "Joe". Here is the abridged interview:
Since Truvada was approved for PrEP, the success rate has been - well, perfect. Not a single person who takes the drug every day has tested HIV-positive, and that includes all participants in clinical trials and studies as well as the more than 40,000 people who use Truvada for PrEP in the US. Nevertheless, PrEP researchers do not usually speak of absolute safety or guarantees - they have always acknowledged that under certain circumstances and in rare cases, HIV infection is possible. This hypothetical situation has now materialised: "Joe" tested HIV-positive after two years of good PrEP treatment adherence.
Let's start from the beginning "Joe": When did you first hear about PrEP?
In November 2012, my doctor at the time, Malcolm Hedgcock from Maple Leaf Medical Clinic, which primarily serves HIV-positive patients from Toronto, published an article on PrEP in Outlook, one of the gay magazines in Canada. I contacted him and he said, "You're the second person to volunteer to take PrEP." You needed a negative HIV test, then you couldn't take any risks for three months before you took another test, and if that was also negative, you could start PrEP. And that's how it was. I took all these tests and then started PrEP sometime in February or April 2013.
Did you have any problems with side effects or with the daily intake?
No, my body tolerated the medication well. And I have an app called Mind Jogger that reminds me of certain things. I had programmed it to remind me to take my tablet a total of ten times every day between 11am and 1pm. The logic behind this was that I would definitely be awake at this time, regardless of what day it was or where I was.
Did you stick to taking it daily, or did you only take it during "times of increased risk"?
No, I took it all the time. A lot of people take it on a "disco-dose" basis [i.e. only in phases where they take risks] for cost reasons. When I was on PrEP, Truvada could only be prescribed off-label for PrEP in Canada, but my employer's health insurance covered the cost, so it wasn't a problem for me. And to be honest, I don't believe in the disco-dose principle either. I think it's better to always keep the same level of active ingredient in your blood.
Has PrEP changed your sexual behaviour or attitudes?
Yes, I have become much freer sexually. PrEP has taken away my fear. After all, it's why people "behave" [sexually]. Not because of morals or religion or society, but simply out of fear of getting sick - especially out of fear of HIV. But once you're on PrEP, you feel better. You feel safer.
How would you describe your condom use before PrEP?
Sometimes like this, sometimes like that, depending on the situation. I'm more passive, and when I felt comfortable with someone, we didn't use condoms, but of course I did serosorting [serosorting: having sex without a condom only with someone with the same HIV status]. But I would say most of the time I had sex with condoms.
And has PrEP changed anything about your condom behaviour?
Oh, yes, definitely. To be honest, I stopped using condoms when I started PrEP. I was such a strong advocate of PrEP that when I was chatting on a dating site, if someone wanted to use condoms, I immediately stopped. I wanted to enjoy sex, and if I or my partner was wearing a condom, I couldn't do that.
Please tell us how you were diagnosed with HIV.
To go back for a moment: I always knew that there was a low risk of contracting HIV on PrEP, but the science was on my side. I would also like to mention that my treating doctor had changed: Dr Hedgcock had moved and Dr David Knox had taken over his position.
On 4 May, I had my quarterly blood tests for HIV and other sexually transmitted infections, as well as kidney and liver tests and all that stuff. Then on Friday 8 May, my doctor called home at six in the evening and said, "Joe, your p24 antigen HIV test came back positive."
I said: "OK, and what does that mean?" And he said: "You are HIV-positive." Well, that was ... that was a shock. I said, "That can't be true, absolutely not. Are you sure that's not a false positive?" But he said that in 90 per cent of cases, people with a positive p24 antigen test are actually HIV-positive.
Further tests then confirmed that the infection was due to a rare strain of HIV that is resistant to several HIV drugs. But even before all these results were available, you decided to start HIV treatment immediately, right?
Yes, I wanted to nip it in the bud, so to speak. He prescribed me very strong medication and within three weeks my viral load was below the detection limit. I now take other medication, only once a day, in the morning.
How did you manage to cope with it all? Did you go to a self-help group or did you seek support elsewhere?
It was crucial that I knew about my situation. My biggest, my worst health problem is not fatal - the infection is being treated and is under control. So, I'm not a believer or anything, I rely on science and the facts.
As far as support is concerned, I have a great circle of friends. Many friends have been living with HIV for more than 20 years and I can always talk to them. Also, my doctor referred me to an HIV psychologist and I think my antidepressants have also helped to smooth the waves and not have a breakdown.
To be honest, I don't wake up in the morning and think about being HIV positive. And when I say that I'm positive, it still feels strange sometimes, because nothing has changed in my life.
In the meantime, your case study has made international headlines. Have you been following the media coverage and online discussions?
I normally take part in such discussions, but in this case I try to stay away from all the comments. For example, a Facebook friend posted "Enjoy your AIDS, PrEPster". I don't know if it has to do with fear or hate or what, but some people feel satisfaction that PrEP doesn't protect 100 per cent. And the whole thing happens on the internet, so everyone has an opinion, right? I'd rather concentrate on my work and apply for a new job, which should change a lot. It went well.
Looks like the diagnosis and all the media hype won't affect your overall health.
Absolutely. I believe in personal responsibility, that everyone is responsible for their own health. I also always talk openly with my partners, whether it's about my status or my aversion to condoms. I have my own rules and boundaries, but I don't impose them on others. If we don't get together, we don't get together. If you have questions or doubts, I'll answer them. But I won't try to persuade you and I won't beg.
Why is it important for your story to be known?
Because knowledge is power. The more we know, the better prepared we are. PrEP is a calculated risk. It's important that people know that the possibility of infection exists, rather than perpetuating the fantasy that no cases of infection on PrEP have been documented to date. Anyway, now there is a case, and that makes the possibility more real. I always tell people, "It didn't work for me, but I still think it's great." And if I could rewind the whole story, I would take PrEP again. I just wouldn't have sex with that man again.
What do you think about the other big PrEP news from early March, namely that the Canadian government has now approved Truvada for PrEP?
I was very relieved and thought: "Authorisation at last!" The more mainstream PrEP becomes, the greater the awareness of it. Doctors will be better informed. And patients will know more. Many myths will be dispelled. And more people will have smart and safe sex.
Original: Meet the Man Who Got HIV While on Daily PrEP, published on 03/03/2016 on poz.com. Many thanks to Trenton Straube and poz.com for permission to publish! Translation: Literature test.
