Shocker: I’m Thinking Of Going On PrEP!

15 April 2013 | 9 Comments

Three and a half years ago when I first heard of PrEP I had an almost visceral negative reaction to it. I mean I really hated the idea on a number of levels. And when the issue came up on Breeding Zone (my forum site) a year later I was still really opposed to it. And then it came up on the forum a year after that and I went on a bit of a tirade against it. In one of the discussions on Breeding Zone a while back the guys raised points that made me realize some of what I thought about PrEP might not be quite right. And over the last few weeks I’ve learned additional stuff that’s changed my thinking on PrEP to the point where I’m actually considering going on it. That’s a huge change for me. So you’re probably wondering what’s changed…

But first… if you’re not sure what PrEP is, it boils down to HIV negative guys taking Truvada (an combination HIV drug) in order to avoid getting HIV. The idea is that drugs that can control HIV in poz guys can ward off HIV in negative guys when they’re exposed to HIV.

When I first criticized PrEP I didn’t really think things through completely. One of my mantras was “what’s the point of going on meds for the rest of your life in order to avoid going on meds for the rest of your life?” And, related to that, I figured that a person on PrEP could become meds resistant if they didn’t take their PrEP consistently – since that’s the case with poz guys who aren’t consistent with taking their meds. But I had that all wrong. It’s not that your body becomes meds resistant – it’s that the HIV in your body becomes meds resistant. If you’re neg you don’t have HIV in your body, so you can’t become meds resistant (though more on that in a moment). Because meds resistance isn’t a big issue, that means neg guys can have a very different relationship with HIV meds than poz guys. Neg guys can go on and off meds. For example, if you’re going on vacation with your mother and you know you won’t have sex during that time, then it’s OK to go off PrEP while you’re on vacation…

The potential for intermittent PrEP use was probably the biggest factor in my change in thinking. For 20+ years I had doctors tell me I had a brain tumor (when I actually had a scar), and those same doctors told me because I had a brain tumor I needed to be on Dilantin – an anti-seizure medication that’s been around for over 100 years. The side effects of Dilantin are very well known and even when I started having problems with my gums they wanted to keep me on the meds. My neurologist (who was very senior at an incredibly well respected cancer hospital) said if I wanted to go off the meds then I needed to find another doctor (which is exactly what I did). Unfortunately, I no longer trust doctors as a result of that,ย and a few other, experiences. (Doctors now have to earn my trust).

Point is, I’m overly sensitive to doctors telling me to go on meds for the rest of my life. Most meds have side effects and I’d rather just not go there. When I thought PrEP meant daily mandatory meds for decades that just rubbed me the wrong way. It seemed like a scheme by the drug companies to pad their profit margins. Now that I see PrEP can be somewhat intermittent that changes things drastically. Side effects from medications are generally less of an issue when the doses are lower and the meds aren’t taken every day.

So last week it started sinking in that I was wrong on some fundamental points about PrEP and I started wondering whether I should go on it. After all, if I’m honest with myself, I’ve got maybe 10 more years of an active sex life after which things are going to start slowing down considerably. 10 years of intermittent PrEP seems a lot better than the maybe 35 or 40 years of daily HIV meds if I become poz. [Note, if you’re an 18 year old those numbers will be very different. So each person has to decide whether PrEP makes sense for them personally.] My boyfriend and I went to Callen-Lorde for STD tests on Saturday and my bf talked to his care provider about PrEP for me and came out with some flyers for studies. I started thinking that I would indeed go on PrEP.

Then yesterday I started validating what I had heard through the grapevine and the numbers didn’t match. The study that the CDC references for gay men on PrEP showed that PrEP was only 42 to 44% effective. I had heard people throwing around efficacy numbers in the high 90s. So my initial reaction was WTF? I started doubting what I had heard and started going back to my “this is rubbish” stance. Some of what I had heard was from my friend who had talked to the guys from Maverick Men. [Just for visual interest, here’s a pic of one of the Maverick Men guys in action…]

maverick-men

When I drew the Maverick Men guys into a discussion on Twitter they were kind enough to give me links to more detailed analyses of the study data.

Apparently the 44% is low because some of the guys in the study weren’t taking their meds like they said they were. Only 3 of the 34 guys who converted during the study had meds in their system when they came in with signs of initial HIV infection. [If you’ve taken the meds in the last 7 to 14 days the meds should show up in your blood.] That means 90% of the guys who got pozzed while “on PrEP” weren’t actually taking their meds and hence couldn’t really be considered “on PrEP”.

When the researchers did models that factored all of that into consideration they concluded that if you take PrEP twice a week you’ll have 76% protection (with the bottom of the 90% confidence interval being 56% protection). If you take it basically every other day you’ll have 96% protection (with the bottom of the 90% confidence interval being 90% protection), and if you take it every day you’ll have 99% protection (with the bottom of the 90% confidence interval being 96% protection). If you want to see a summary of the study look at this PDF (particularly page 11). And if you want to see the full study, look at this PDF. [There are now studies underway to validate and replicate those numbers.]

Of those options – every other day sounds pretty good to me. I’m willing to sacrifice a little efficacy for fewer side effects from the meds. After all condoms are only about 90-95% effective – so that seems like a reasonable benchmark to me. But if people want more protection then they can go with daily meds. And if they want even more they can do daily meds plus condoms and/or closely screening their sexual partners (which is what the Maverick Men guys are doing). Personally, I don’t mind a little risk in my life, but each person is different.

Now, I mentioned that things weren’t quite clear cut on meds resistance. The issue is that, of the guys who converted in the study, a fair number of them did become meds resistant to Truvada. The bottom line is that if you go on PrEP you have to take it seriously, and you need to be regularly checked by your doctor to see if you’ve become poz (among other things). neg-testAnd realize, if you have Truvada in your system those at home HIV tests won’t work – you have to see a doctor for an accurate HIV test. [I was wrong when I first wrote that last sentence. However, if you take PrEP intermittently and you become poz you could become drug resistant. An RNA HIV test can detect infection more quickly and is more likely to help you avoid drug resistance.]

So there we have it… Who’d have figured, but I’m actually looking into going on PrEP. Apparently you can just have a doctor write a script for it – insurance companies can’t tell the difference between Truvada for HIV treatment and Truvada for PrEP. Or you can join a study – there are several under way. I’ve made a call to the the one being run by Columbia University and some other sites (Adapt – HPTN 067). I’m waiting to hear back from them.

And before I decided to look into doing PrEP the first question for me was whether I was still neg. After all, that is the #1 requirement for going on PrEP. I didn’t get a test on Saturday ’cause I had done an at-home test on March 6th – I didn’t think it was necessary. But I was a bit of a whore a couple weekends in March, so I did another home test today and it came back neg (see pic to the right). Those slutty weekends were 3 and 6 weeks ago, and while I’ve been sick a lot since then it hasn’t been with “flu like” symptoms, so the test is most likely correct – though it would probably be smart to do an RNA test before I start PrEP.

I’ll give updates on what happens as I try to get into the Adapt trial (or, if that fails, when I get a doctor to prescribe Truvada).