So a few updates on my quest to try out PrEP…

First, PrEP is going to be a bit expensive. The insurance company is a bit weird. They won’t say how much the drug is going to cost until AFTER it ships, but based on their cost estimator it looks like it’s going to cost me about $225 per month – and that’s with them covering 81% of the cost.

The costs in the graphic above are for a 3 month supply. If I were poz Gilead, the maker of Truvada, would cover my out-of-pocket cost of Atripla. But since they’ve got the only approved drug for PrEP they’re not quite so generous for neg guys – according to their website they’ll only cover the cost for guys who are completely uninsured. Personally I think they need to address the issue of cost issue if they want PrEP to really catch on. I can probably afford the cost, but my boyfriend is already complaining about it. So we’ll see if I continue after 3 months…

Second, PrEP really does have to be taken daily. My initial reading of the data I saw was that there was decent protection when taken every other day (or 4x/week), but my understanding of things was incomplete. The Maverick Men guys referred me to someone in Boston who’s been working in HIV research for 10 years now and currently involved in a study on PrEP. I’m just going to quote his response since he says things more simply and eloquently than I can…

You’re spot on in terms of 42% being the total protection which included people not taking their drugs.  The difficulty with the >90% protection is that those numbers come from post hoc (after the fact) analysis.  To achieve those numbers in the real world, we would have to enroll people, watch them take the medication every day, and see what the results are, which is clearly not possible.

As it stands now PrEP is only authorized for daily use. In the future that may change, and it is possible that you would receive some benefit from dosing every other day, but to achieve maximum efficacy it would make sense to take the medication daily.  Additionally, infrequent dosing could potentially lead to lingering GI side effects such as nausea or changes in bowel habits.  From a side effect standpoint, Truvada was chosen for PrEP because it does have such a great safety profile; less than 5% of people on Truvada experience any side effects, and for most of those people they resolve within a matter of weeks.  The two more concerning side effects – changes in kidney function and changes in bone density, would be monitored for by your doctor, and if they occur are reversible by simply stopping the medication.  More importantly, it is generally easier to incorporate a daily medication into your routine than an every other day.

In terms of going on and off PrEP, Truvada has a long half life so missing a dose here and there will not leave you completely unprotected.  However, if you choose to start and stop taking the medication, it is possible that you could experience ongoing startup GI side effects.  To avoid these, it is advised to take the medication daily.

That’s a pretty good explanation of why daily PrEP is the way to go. I’m not 100% happy about that – I’d prefer a more casual / less intensive relationship with the PrEP meds, but it sounds like that may be problematic. I mean I don’t feel like I have to have “maximum efficacy” – I’m OK with “pretty good efficacy” – but the thing is that the study that implies decent efficacy when taken 4x/week isn’t based on direct data. Hell, the efficacy of daily PrEP is based on the same study and may not be nearly as good as people think – there’s a long way between 42% and >90% and it is just a regression model. It’s probably right, but there’s no guarantee.

So daily PrEP it is.

[BTW, the guy in Boston recommended two more documents for people interested in knowing more about PrEP. This one is a little dense because it’s aimed at medical providers, but you may find it an interesting read if you like details. Meanwhile this one is more of a simplified version for patients.]

My pills should arrive end of the week or beginning of next week. So I’ll be starting soon…

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, 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…]

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). And 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).

For a while now I’ve wondered if I was immune or resistent to HIV. And if I was either, I thought it wasn’t exactly “right” to be advocating bareback sex and encouraging others to take risks when I wasn’t taking all that much risk myself. Well, that’s not the case. I got a comprehensive genetic profile done at 23andme.com and I’m just as much at risk as the rest of you…

CCR5 Mutation & Resistance/Immunity to HIV

The most well known genetic mutation that’s related to HIV is CCR5. If you have one mutation (“DI” below) you’re considered “resistant”, if you have a double mutation (“DD” below) you’re “immune”. These mutations are apparently the result of your ancestors surviving Small Pox epidemics hundreds of years ago. Apparently, 10% of people of European ancestry are DI and 1% are DD.

The table below uses more strict definitions of “resistant” and doesn’t use “immune” at all. What people typically call “immune” just means immune from most forms of HIV, not all – total immunity doesn’t exist. 23AndMe calls that “resistant”. And what people typically call “resistant” just means HIV has to work harder to infect you because it has fewer places to attach to in your body. If you’re DI (single mutation), then HIV also can’t replicate as easily and you’ll naturally have a lower viral load if you get infected and that means you’re more likely to be a long-term survivor.

As you can see I’m “II” which means I’m not immune or resistant. I’m just as susceptible to HIV as most people. Which means the only reason I’ve stayed neg this long is because I’m a top and tops are at much lower risk than bottoms.

Honestly I was sorta hoping for DI – a single mutation. I thought it would be asking too much to be fully immune, but I would have been completely happy being a long-term non-progressor. I’m not a big fan of pharmaceuticals. They do great things and I take them when I must, but I’d rather not take them if I have the option. If I had been DI that would have let me stay off meds for many years after becoming poz.

The other thing is I’ve always seemed to be “top 10%” in a lot of things in life – at least the ones I cared about. But genetics isn’t very forgiving in that respect. You can’t work hard and achieve a better genetic profile. You just are what you are. In this respect I’m not top 10% – I’m just average. It was actually a bit of a bummer to find that out.

“Controller” of HIV & Disease Progression

One thing I found out from the genetic test is that there are more genes than CCR5 that affect HIV. There are others control whether your body is naturally able to control your viral load. The first controller genome is rs5968255, but I’ll gloss over it here because it only seems to benefit women – there’s no correlation for men.

Emerging research which was published in Science in November of last year, says there are two other genomes that affect whether your body can control HIV once you’re infected – rs9264942 and rs2523608 (boring names, I know…) – rs9264942 is related to HIV control in people of European ancestry, rs2523608 is related to HIV control in African-Americans.

For people of European descent every “C” in rs9264942 makes you 2.9 times more likely to be a “controller”. I’m “CT” so that means I’m 2.9 times more likely to be able to control HIV than an average person. If I had been CC I would have been 8.4 times more likely to be able to control HIV than the average person. It doesn’t mean I’ll be able to control HIV viral loads – it’s statistics – I’m just more likely to be able to control HIV. Given that I didn’t have a CCR5 mutation, I’ll take any good news I can get.

Unfortunately, rs2523608 isn’t one of the 900,000+ genomes 23AndMe maps. So if you’re black, getting the 23AndMe test done won’t tell you anything about your ability to control HIV. However, if you do find a way to get the results, each G makes you 2.6 times more likely to be an HIV controller. I have a black poz fuck bud who swears he’s undetectable despite not taking his meds – all I can think is that he must be GG on rs2523608.

I also don’t see any discussion on 23AndMe of the gene that’s supposed to make blacks 40% more likely to catch HIV.

So what does all of this mean?

For me it means I’m just as much at risk as most of you, but the silver lining is there’s a chance my body might be able to control HIV if I become poz – but that chance is far from a guarantee.

If you’re one of the “worried well” who are neg but feel drawn to barebacking you might want to get the test to understand your risks better. If you’re DD on CCR5 then you can sorta relax – your risk is truly minimal. If you’re DI on CCR5, or CC on rs9264942, or GG on rs2523608 then if you become poz then chances are being poz won’t be a huge problem and you’ll do fine with no or minimal medication. If you just have one C on rs9264942 (like me) then at least you’re “above average”. But in all those scenarios there are no guarantees. There are forms of HIV that can even get around a DD CCR5 mutation.

If you’re already poz you may want to get the test to understand whether your body can possibly fight HIV on it’s own. A lot of doctors rush poz guys onto meds immediately after infection. If you’re DI on CCR5, or CC on rs9264942, or GG on rs2523608 then that was probably a bad decision on the part of your doctor. In those cases the doctor should wait and see if your body can control HIV naturally. For those people the drugs you take may do worse things to your body than HIV. Now, if you stayed off meds for a while and it was clear your body couldn’t control HIV, then taking the tests is probably pointless – you already know your body’s response to HIV.

I’m a huge believer in data – the more you know the better decisions you can make. If you’re interested in getting a test from 23AndMe, realize they run sales. I got mine for $99 (for the test) + $65 (for a 1 year web membership) + shipping – so about $170. The prices are about $100 higher now.

Other results from the genetic tests…

The test is about a lot more than HIV. 23AndMe maps over 900,000 genomes. I was really glad I did the test because I found out I’ve got a 37% chance of prostate cancer. I’ve got 4 sisters and no brothers. My dad had 5 sisters and no brothers and my mom only had 1 brother (that survived to adulthood). So there aren’t enough men in my family for me to know I was at risk of prostate cancer. Now I know I have to get tested regularly for it.

I should mention that 23AndMe is backed by Google and some really big names in biotech. They’re definitely a reputable company. However, certain states (including New York) have outlawed direct-to-consumer genetic profiling. Their thinking is that these tests should only be performed and interpreted by doctors. As a result I wasn’t able to use the test kit in New York – I took it with me on a trip to Philadelphia, spit into the test tube and mailed it there. So if you’re in NYC and want to do this, realize that at a minimum you need to take a ride on the PATH over to Jersey to take and mail the test.

Honestly, I can sorta see why some people don’t want consumers interpreting genetic tests. For example, I have a much higher risk of Celiac Disease than the average person – I’m 6.55 times more likely to get it. However, even at that much higher risk, there’s still less than a 1% chance that I’ll get Celiac Disease. If I didn’t have a background in statistics I might misinterpret that result and start worrying about Celiac Disease. As it is, I haven’t even looked it up to figure out what it is.

First the good news…

The Dutch have figured out that a person who is diagnosed at 25 will live an average of another 52.2 years – meaning they live into their upper 70s and have a pretty normal lifespan. So as we’ve sorta known for a while now – HIV is genuinely going from a “killer” to an “inconvenience” and that tren will probably continue as years go on. I don’t mean to diminish how big of a hassle being poz can be, but if you get diagnosed quickly and generally take care of yourself, it would appear you no longer need to worry about your life being cut short because of HIV/AIDS. But getting diagnosed fairly quickly is essential…

[That should be very good news for the 18 y.o. Teen Cumhole I talked about in my last post…]

Now for the bad news…

The bad news is that they’re not so optimistic in Africa. The South Africans are suggesting that everyone who becomes poz be put on meds immediately whether they need the meds or not. When you think that a lot of the people who are dying of AIDS today are people who are having serious complications from the meds they took 10 and 20 years ago, that’s a dangerous policy. I’m all for people taking the meds they need, but I’m a fierce opponent of medicating people who don’t need it.

The issue here is really one of which comes first – the rights of the individual or protecting the wider community from the danger posed by the individual? Americans will usually say the individual comes first, but in Europe and elsewhere the community comes first. But I think it’s important to remember the good news from the first part of this blog post – IF you get diagnosed early and are financially able to get treatment there really is very little risk to the community. But in poor countries like South Africa they don’t have the money for great treatment and so they have debates like this. I just hope no one in the first world tries to make an argument for mandatory medication… That would just be horribly wrong.

There seems to be an upswing in Hep C cases in poz guys in NYC…

Researchers in New York City are reporting their work uncovering a new epidemic of hepatitis C virus (HCV) infection among men-who-have-sex-with-men (MSM) who have HIV infection. These authors have previously reported unusually rapid fibrosis progression due to new HCV in MSM who have HIV infection and now expand on their findings, demonstrating that sexual transmission rather than injection drug use is the route of infection. Treatment is highly successful if started early in the course of infection, however, they report ominous news about liver disease progression. “This epidemic represents a new clinical syndrome for HCV infection that turns much of our knowledge on its ear: a new risk group becoming infected through a previously rare route of transmission resulting in unprecedented progression of liver fibrosis,” (Source)

Previously Hep C was almost always transmitted through shared needles. Now they’re seeing a fair amount of Hep C passed through sexual contact. So detection and early treatment are important. What I don’t understand is why they’re not worried about sexual transmission among neg guys.

So when you go in for your routine tests, make sure you get tested for Hep C – it’s not just for drug addicts anymore. I’ve always heard Hep C can be worse than HIV – so don’t take this lightly.

UPDATE: Another piece of research has been released that says that fisting is one of the primary risk factors for Hep C in men who are already poz. Basically it’s blood, not semen, that’s doing the damage.

I’ve always held the view that HIV was becoming less deadly because deadly forms of viruses kill off their hosts more quickly and have less chance to replicate. But a study that’s just out refutes that and shows that in a controlled population (the military) they’re seeing HIV become more virulent as measured by how quickly after infection the person’s CD4 cells drop and they need to go on meds. [Additional discussion of the article is available elsewhere.]

Researchers studied data from more than 2,000 HIV-positive active-duty military personnel, retirees, and dependents between 1985 and 2007 who had tested HIV-negative within the previous four years. When they looked at patients’ first CD4 count after HIV diagnosis, they found that it decreased from an average of 632 cells/mm³ in 1985-1990 to 514 cells/mm³ in 2002-2007. Additionally, 25 percent of patients diagnosed with HIV in recent years already had fewer than 350 CD4 cells/mm3, the threshold for when antiretroviral therapy should begin, compared to only 12 percent of patients in the late 1980s.

The authors note that the trend seems to have stabilized, perhaps due to the widespread introduction of highly active combination antiretroviral therapy.

It suddenly struck me what the flaw was in my theory… Medications… Basically meds change everything and let people with virulent forms of HIV survive longer – as long as people with mild forms of HIV. But that’s not quite right either since when someone is “undetectable” they pretty much can’t pass on the virus. But perhaps the more virulent strains are exceptions to that rule? Or maybe we’re really talking about a small population of “gift givers” and the gift givers with the most aggressive strains are are more likely to have their “gifts” be “successful”…

The point is ARVs most likely changed the rules in this scenario and HIV may indeed becoming more virulent, not less.