Okay, let me dig deep and make an admission. As an LGBTQIA+ person, I’ve never had a formal HIV test.* You’d think that, also, as a healthcare provider, I would be more likely to have done this. But no. I’m pretty solidly aware of the risk factors, and I know the risk calculus of my own exposure likelihood pretty well, but I haven’t ever had testing confirmation. *Taylor Swift voice* Like, ever.
My organization, The Network, shares a building with The Grand Rapids Red Project, Grand Rapids’ leading HIV advocacy organization.** And yet, we don’t talk much about HIV at the Network, outside, of course, of talking about HIV and gay men. And I have to admit, I knew that HIV happens to a lot of people other than gay men, but I didn’t know a lot about some of the other risk groups. It’s kind of embarrassing. Before I started transitioning, and started learning the facts, for instance, I didn’t know that the risk of HIV infection is estimated to be almost fifty times higher in transgender women*** than in the general population. Fifty times.
The origins of this are complex, but they don’t simplify to wealth or regionality – the rates are shockingly high even in wealthy countries, including here in the United States. Those numbers are a little unclear, in part because of things like studies historically considering us a wide variety of strange things (like considering trans women as automatically falling in the men-who-have-sex-with-men category, in some cases barring us from giving blood for this reason, #no), with national estimates quite possibly around 20% in trans women (meaning one out of five trans women would have HIV), and in some high base rate regions like San Francisco, where the trans population also tends to drift, maybe even 35-45%. 10%, 20%, or 40%, though, these are insane numbers. And I don’t want to just call out The Network (without betraying anyone’s confidence, let me just say that HIV is not a topic of conversation that I can recall ever coming up at our trans group) – I’ve been now to two national trans conferences, First Event and Southern Comfort, and the only discussion of HIV testing I ever hear is that many surgeons do a rapid HIV test before surgery.****
I’m an intersectional feminist (and a radical feminist, and proud of it) – and the evidence backs me up. It’s pretty likely that multiple marginalization is a big contributing factor – living in a high-wealth country doesn’t protect you from HIV, but living poor in a high-wage country puts you at higher risk. Underrepresented ethnic minority status (which may not just mean being a “person of color”) confers risk, statistically. And exposure to drugs, commercial sexual exploitation (and I do mean exploitation, this is not a SWERF narrative), and other factors increase risk. So, it’s quite possible that someone like me does have somewhat lower risk (I do, actually, know about what does and doesn’t put me at risk), but it’s also quite probable that the reason that Southern Comfort Conference doesn’t talk about HIV is that the rate of HIV among SCC participants is actually much lower than the global HIV statistics among trans people. Quite possible. And quite unhelpful. And quite scary, since, probably, like me, most of them didn’t know, at least for sure.
So what are the recommendations? Currently, the US government, amazingly, recommends only yearly screening even for high-risk populations, but local experts like Kevin are recommending yearly tests even for monogamous heterosexuals (since, well, sadly, you never know what your partner might be doing) and quarterly testing for target populations (people who have unprotected sex and/or multiple partners, people who use injectable drugs, and a few other categories, for instance, infection with herpes simplex virus, which is very common and can be asymptomatic, is known to increase HIV risk). I find this really interesting. Kevin told me that Red Project is really one of the primary providers of screening in Grand Rapids (many others refer to them, and they have a number of contracts that make them the “go-to” provider from certain referral sources), and they plan to do around 500 tests in 2015. This is a significant increase from 2014 (about 20%). But…hmmm… okay, you know the girl has taken a few math classes here and there (insert trope about women not being able to do math). Sexually active adults, even if they’re monogamous, need yearly tests… and Grand Rapids has a city population of almost than 200,000. And, erm, you know the suburbs are coming to the city for this stuff. Doesn’t that mean tens of thousands of HIV tests should be happening in Grand Rapids yearly?
Kevin and I got to be on a panel for GVSU’s Student Nursing Association a few weeks ago.***** When I got tested, I got to follow up with Kevin on this topic. Back at the SNA presentation, I had opined (potentially, somewhat ignorantly) that I just didn’t see the recommendations on HIV testing frequency happening unless one of the primary sources of testing was at the annual primary care visit (or with other primary providers, such as OB-GYN’s, since many women really rely on them as their PCP’s, in effect). Kevin has a valid point. The biggest problem is that PCP’s and their staff are really not equipped to deal with the intense feelings, fears, questions, and uncertainty that would arise from positive testing results. And a lot of the people who get routine tests with Red Project tell them that they really don’t feel a comfort level at their PCP. Also, anyone who’s gotten follow-up recommendations from their PCP and felt like they slipped through the cracks will wonder how well aftercare can happen with that setup. Kevin and his team, in contrast, get you set up with care very, very quickly, and they hold your hand (literally – they come to the first meeting with you) into care. Kevin’s got great points – there need to be other kinds of options, and particularly ones that make LGBT people, women, and ethnic minorities feel more comfortable. But I do think PCP’s need to be a part of the mix – I’ll go anywhere I need to go, but I know that I’ve been going faithfully to my PCP annually, ever since I became sexually active (and before), and it’s a problem that the best HIV counseling I’ve ever received from them is what I wrote in the first footnote. Truth is I should have been streamlined into yearly testing (which is probably a good fit with my risk category, overall), but just like a lot of the rest of you out there, I wasn’t.
Okay, so that’s a lot of politics. So what was the actual experience of getting tested like? Well, it was nice. Kevin was great (we’re just getting to know each other, but I think he’s kind of fab, anyways). The interview questions raised lots of questions… my life is a little complicated. For instance, I’m a woman, and although I have a stable partner at the moment, whether I’m a woman who sleeps with women or men is a little bit in flux right now (hint: get ready for a Mira Goes Way Het blog at some point). But I have (not trying to be non-PG-13 here) been with women… erm… well, in the way that men are with women. Anyways, it turns out that, far from not thinking about trans women, the screening instruments really view all queer women as a bit of an afterthought, here in Michigan, at least. Some of us might be at lower risk, although there is at least limited case history of female-to-female transmission. Kevin already knows to be pretty trans (and everything else) friendly, and I’m no shrinking violet, so I didn’t feel too awkward. It was more of an interesting discussion (starting with me just simply identifying myself as female, since I didn’t notice there was a transgender option – Michigan only allows one thing to be selected, though, and of male, female, and transgender, you kind of know I’m going to be choosing female). So, there was a short history… the kind of stuff you should be telling your physician (*cough* *cough* people, start telling your physician this stuff, they need to know). Told here, as it would be at your doctor’s office, in confidence. But I would plead with trans people – don’t be scared away from HIV testing… you’ve had the chutzpah to start coming out to people, to live authentically, you got this.
After that, they use a finger prick and blood-based test. It takes just a few minutes to do the actual test. It’s like a pregnancy test, except I’m not allowed to pee on it (and, sadly, I already know what the pregnancy test is going to tell me). The test looks for an antibody reaction. There is a prior phase in which there are not yet, antibodies, but there are antigens, and there are tests that are starting to roll out that test for that. But what this means is that, if you’ve had a new exposure to HIV recently, and recently in some people can be up to 12 weeks, then it might not detect it. This is most of the reason why high-risk people should get HIV tests every three months (which seems eminently reasonable, unlike the CDC recommendations, which seem way too loosey-goosey to me). They do a second test if the first test is reactive (that’s positive, or it means you have HIV antibodies in your system), but they go ahead and set you up with follow-up care in the meantime, because time is of the essence (and we already know that people who do things like get tested, especially if they don’t do them routinely, are in a time-critical window of action – making them wait significantly increases the chances they will just convince themselves they don’t need to do anything). They give you a piece of paper with your results.
This is one more little bit of politicking. A lot of people post these pieces of paper on the internet, like on Facebook, or they tweet that they’re HIV negative, or whatever. The nice part about this is that they are raising awareness of getting tested. The bad part about this is that they’re putting HIV positive people in a tricky situation. If we LGBTQIA+ people are just getting used to the idea of being out, we should be able to understand the basic premise that being out is deeply personal, and we do not “out” other people without their permission, or make them feel ashamed of not being out. And what, pray tell, is the point of coming out HIV negative? It’s like coming out as straight (no, you still can’t have a letter in the alphabet******, and no, I’m not coming to your straight parade). So, I’m not going to tell you (much like I respect Laverne Cox’s decision not to talk to you about her downstairs parts). I’ll simply say that I know it. My partner knows it, too. I haven’t seen my doctor yet, but I’ll be happy to tell her. And that’s the point. Those people need to know about this. And now we do. I mean, look. We’ve got enough reasons to be mourning our dead at Transgender Day of Remembrance every year. HIV kind of doesn’t need to be yet another one.
* Okay, this is real Mira back in the house, and you know I bring my footnotes. I actually had a physician at the University of Chicago – not a resident, but I saw the actual professor overseeing the residents – tell me that, since I’d donated blood, I had a de facto HIV screen (footnote within a footnote, this was back, obviously, before I came out – but actually, policies surrounding whether trans people can give blood are more than a little unclear, as you’ll see back above, later in the story).
** Kind of embarrassingly, before I came in and started Miracizing the place, we haven’t always had the warmest relations… to me, it’s kind of embarrassing for the LGBT community center to not be the most vocal supporter of the HIV organization. I mean, we’ve got a lot of fights, but this is one of them, for sure. Like I said, though, I’m working on that.
*** This isn’t a funny footnote. I say trans women – the CDC looked at NYC HIV data – of transgender HIV cases between 2007-2011, 99% of them (essentially all but two) were trans women. Of course, trans men, genderqueer, and gender fluid people face many of the same risk factors, and in some cases can be at higher risk (for instance, my medication is all oral, and if I did need needles, I know how to get them safely, but trans men who share needles, for instance, for testosterone injection, would be at pretty high risk).
**** I don’t want to ignore the fact that my people are pretty oppressed, but people dying of HIV is just not more important than my access to bottom surgery. For serious.
***** In the middle of a November snowstorm, I might add. But we’re fierce queers, we don’t miss stuff. And they were fierce nurses, and they were out in force.
****** I don’t get a letter if I land back in heteroville, either. But I’m keeping my claim on the “T.”