Since my post on CCR5 mutations and HIV immunity, several of you have asked so many intelligent, insightful, and surprisingly theory heavy questions around this issue, that I thought I would dedicate a few posts to it in the hopes of answering many of those questions.

Well, no better time like the present!  Therefore for today's post I attempted many of the most frequent questions for this article. Now, it is your turn. Remember, nothing is too off limits, as I strongly feel if I am putting it out there to discuss, I need to answer what reasonably comes up.

Sorry for not posting this sooner, but the questions were very layered ones, and I wanted to spend a bit of time on them before I responded. I'm gathering from many of the emails there is a potential this could be personally relateable? Many of you wonder how you can still be negative in light of some of your memories around activities.

I'll attack the topic by offering the situations I would recommend a patient tested for CCR5, and then get into specifics that relate to the ethics of CCR5 as a routine test.

It needs to be kept in mind that the majority of MD's and others practicing primary care in America, and specifically if it is a family practice situation with no further post graduate training or certification in HIV care, the response you are likely to hear is "Uhm….CCR what"?

I don't exaggerate. My intention is not to pat myself on the back when I state that my reality of public health training is six plus years of undergrad and post grad education and critical care paramedic certification. By virtue of that, my field of knowledge surrounding new treatments is, by necessity, very broad. An unfortunate reality for a number of doctors is that beyond medical school and internship, the opportunities for continued quality education are not held in high regard, or not seen as important by the ones who manage the profession.

So, ones chance of getting a health worker who knows that CCR5 has something remotely important to do with HIV, as well as one who is professionally supported by structures that would make that test an option, are not likely to happen if one is outside of a major city and without a graduate medical training program. Therefore, even though it is a completely unacceptable reality in 2008, this is not changing anytime soon.

Now that we're done with the tone of the professional environment backdrop, if you came to me and asked about a test for a mutation of CCR5, I would answer according to the following guidelines that are now being supplied. Keep in mind, the practitioner must personally request the assistance of these guidelines from the CDC. Therefore, it is unlikely they are being used by most medical practices.

1. You have within the past three familial generations, an ancestry that is tied to Northern Europe . (found in UK, Scotland, Ireland, Scandinavia, Germany, Switzerland, Austria and Russia). If you didn't have that trait any partial or full lineage from those places, then you aren't a candidate for testing as it is not thought to exist in anyone but those mentioned. Reasons for the solidity of belief in this area is the interesting connection those who share the mutation have with rats of centuries past England. Specifically, immunity to bubonic plague. HIV immunity is directly related to that which provides immunity to the black death. The discovery of this on anthropological grounds lead to the discovery of CCR5 in HIV immunity.
2. A history of more than three high risk sexual activities with an HIV + individual or one that is likely to be thought +, resulting in the same number of HIV negative test results. Over a minimum of 18 months. Reasons for the time line would be that 94% of people, if they are going to seroconvert, do so at 3 months. 99.9% of people will do so at 6 months. So we need to wait to see each time, if in fact it will be a negative test.
3. In a case like myself, an extended history with someone HIV positive but unaware they were infected (for me it was three years), with consistent unprotected sex, and a confirmed negative result post six months as well as currently, lends itself to an overwhelmingly strong suggestion of immunity and would justify a lab result right away.
4. Never say never.  In other words, if I as a health care practitioner don't quite see the need, however my patient seems particularly stoked on the idea he or she may be immune, I'll normally recommend the test be ordered. The exception would be the small minority of patients who have a vested interest in the drama around waiting for a test result. That may sound strange, but anyone in the field can tell you the first time they had a shrieking, crying "my life is over" client come in for an HIV test, or any other test that references a condition where there exists a lot of judgment and stigma. By the fifth or sixth time in the same amount of months, it's clear attention is the motivation.  And this is specific to every aspect of health care, not just HIV.
   

You ask about cost, and yes that is a factor as it is well into the thousands, as it is a detailed genetic mapping and typing that is used very, very rarely.

Lastly, the reason that this has never been pushed as an issue in a patient advocate sense, is similar to the current flap over PEP, (post exposure prophylaxis - the HIV "morning after pill"). This is discouraged as many think we would be tacitly validating unsafe choices. Or so goes the current mantra / shame based morality play.

If you haven't guessed, that is what we in public health call "incorrect framing". Because with PEP, we would be providing an alternative for the individual who, for whatever reason, made a choice they would normally not have made. This is not treatment that is geared towards those who routinely practice unprotected sex.

Detractors of PEP, and detractors of CCR5 testing, usually subscribe to the current urban legend that wants us to believe that it's overwhelmingly the "I just slipped up one time" negative guy who has unknowingly been taken advantage of by the drooling, slutty and twisted poz pig. Funny thing is, all the current research overwhelmingly points to other conclusions.

But there is still a purpose to that dynamic for those who engage it, isn't there? It will usually set up the required level of tension, and often increase the divide between poz and neg gay men even more so than is already present. Funny too, that is also not the reality I see when I spend four hours a week, like I have for the last ten years, taking HIV tests, and in two weeks giving results. And yes, often I am telling someone they are positive.

What I have been finding for many years now, is that most don't need me to tell them, as the result is usually not a surprise. As many have been regularly avoiding condoms and having unprotected sex for years. The reason we often see a problem in high number reports when these men are tested, is because that test is occurring only when they feel as if they can actually face a positive result. That's why many "negative men" haven't been tested in three or more years.

I want to close with a very clear statement. Before anyone climbs up on the tall, shining horse of moral authority and decrees that the above behavior is "bad", please realize that it is in every way considered to be both a normative response to the event, as well as a very human response to the event. In other words, chances are, you are likely to behave similar, given the circumstance.

In light of that reality, the idea that a test for a genetic marker affecting 1% of the population will lead otherwise good little gay boys to go tearing down to the slings at the tubs, I see as misguided and not recognizing what we know about sexual realities and human behavior. There is a long held and brilliant idea that has informed much of our not so brilliant attempts at prevention. It is knowledge = power. Last I checked, that had never become open to variables. We need to ensure it never does.

Sorry the length of this is akin to War and Peace, but it is a bit of a complex issue.