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.