From this month’s POZ magazine: In October 2008, the Centre for Disease Control and Prevention announced that the number of people living with HIV in the United Sates but who haven’t been tested and diagnosed fell from 25% in 2003 to 21% in 2006.

Why is this interesting? Well, it’s often been said in these here blogs, and elsewhere of course, that the primary source of transmission is not from guys who know they are positive, but from guys who don’t. I buy that. But is that pool of poz guys who don’t know they are poz getting smaller?

Not necessarily, I’d say.  Statistics like this have a habit of reinventing themselves periodically, sometimes in quite spectacular ways.  Remember when we had forty million people infected globally, and that number shrunk to 33 million overnight, because the WHO said we all got it wrong?  You’ll need to convince me that statistical errors aren’t happening here before we debate this.

Be that as it may, the related number most quoted in our campaign - the number of poz guys who don’t know it - is 30%. Is that going up or down? I haven’t heard. Do we know, I wonder?

I wonder too how much we know about this pool of “negative” guys who are actually poz. It’s a no-brainer that prevention efforts need to be directed there, but to do that effectively,  we need to know who are these guys.

Here are a few clues, entirely unscientific, based on surmise rather than hard data, (I admit I’m not too familiar with what the Polaris study, which looks at the newly infected, is saying on this.) My take though? Chances are these guys may have a bit of a lax approach to testing. Chances are they may be no strangers to fucking without condoms. Chances are they have more partners than most. Chances are they live in big urban centres. Chances are they are scared.  That’s a start. Ethnicity, age, etc. can be extrapolated from the epedemiololgy of new infections. So perhaps we know more than we think we know.

I’ve heard characterizations of this group, though, which aren’t very flattering, and that worries me. I’m concerned that we not demonize those folks. Because in our rush to judgement - to point out that people living with HIV are not the demons they are sometimes painted to be - pointing the finger elsewhere can easily demonize others. Now that’s just too weird for me.  In this case the “others” are poz guys who don’t know it. We “known” poz guys may be targets of stigma, but it’s unbecoming, unfair and unwarranted to stigmatize others, who in reality are pretty much exactly like us.

So let’s not, eh?.

/rant

Who’d have thunk that Darren James, star of Black Dicks in White Chicks III and scores of other similar - errmm - entries (honestly, his filmography goes on and on: http://www.adultfilmdatabase.com/actor.cfm?actorid=2226) would have something to say about HIV stigma. But in this month’s POZ magazine, he does, and it’s quite enlightening.

Although Darren’s name was unfamiliar to me - largely because Black Dicks in White Chicks III isn’t exactly my niche, as it were - he is apparently notorious in the adult film industry not only for becoming HIV positive but for infecting, unwittingly it seems, a number of his female co-stars. He’s since retired, and talking about the experience. Good for him.

Read the POZ interview here: http://www.poz.com/articles/darren_james_porn_hiv_2271_15639.shtml

What interested me particularly about the article were Darren’s comments on the reaction to his diagnosis. “Many heterosexual guys with HIV experience a double stigma, which is different from that of our gay and female counterparts. Not only do you have HIV (big stigma there), but everyone you run into, even people within the positive community (even those who profess to be knowledgeable about transmission), will insist you must have gotten it some other way. They might not say it to your face, but they’re usually thinking it. That part about living with this disease as a heterosexual guy really sucks. A lot of positive women don’t want to believe you when you tell them you got it from a female.”

That comment, more than slightly homophobic, really sucks too.  Darren is saying that not only do people know he’s HIV, but - jeez, they’re thinking poor James is gay too. How yucky is that?

Having said that, he makes a point worth dwelling on that has nothing to do with Darren’s neuroses. Namely, that many folks with HIV experience stigma from more than one direction. Darren is HIV, but he’s also a porn star (one who didn’t use condoms) and he’s black, and girls think he’s a fag. He was also diagnosed in the “age of enlightenment” when it’s considered by many to be downright dumb to contract HIV.  That’s a lot of stigma to handle, isn’t it?

But he’s not alone in this stigma-piled-up-on-stigma state of things. Myself, I’m pretty lucky. Why? I’m positive but I don’t have Hep C. I don’t have a prison record, a drug habit, work in the sex trade, nor am I homeless. But I’ve worked with many poz guys who share more than a few of these attributes. Letting the world in to see even a fraction of that burden must be exceedingly difficult, a brave act indeed. Yet people do it.

I guess I’m suggesting that HIV stigma is seldom a stand-alone concept. Many of us are HIV and gay, which combined, carries its own stigma, albeit perhaps reduced from days gone by. (Remember when there was a distinction between “innocent victims” of the epidemic -  the blood transfused - and us gay men?)  But so many out there have it worse, much worse, dealing with multiple layers of stigma, and I’m beginning to think that if we just tackle the HIV stigma alone, and don’t address the “cofactors” which compund that stigma, we are kind of missing the boat.

Wadyya think?

In the last two weeks, I’ve spent four days at conferences for poz peeps. This not being downtown Toronto, we were a mixed crowd, about 50% gay men with the remainder divided about equally between women and straight men.

Some guys from our group, GMSH (Gay Mens Sexual Heath Alliance) presented some of the work we’ve been doing in a 90-minute session the first day. They did a good job.

Afterwards, an earnest gay guy came up to me and said he felt uncomfortable with it, because there were straights in the room and they don’t like hearing all this gay talk, plus of course it sends the wrong message - that HIV is a gay disease.

Yikes! Brian talked about this monkey on our back in a previous post, but this is where the rubber hits the road.  Clearly some folks think de-gaying HIV is a a good thing. I don’t.

Anyway, how did I handle his complaint? I rambled on about how a lot of this stuff - disclosure and the law, viral load concerns, poz prevention, etc. - was relevant to a straight poz crowd too. Lame, I know. But later I regretted it. I should have been more blunt.

These regional gatherings routinely discuss issues affecting groups at risk - this one, for instance, had sessions on injection drug users, womens’ issues, the Hep C co-infected and more. All good stuff. But this GMSH presentation was the first time I can remember that gay men have even been the subject of a session, and I’ve been going many years. And talking about HIV and gay men raises eyebrows?

As it happened, this wasn’t the only gay content. I made sure to include references to the history of gay men in our movement when I presented a session on leadership. Later there was an amazing performance-piece by some high school kids who’ve been working with a local AIDS Service Organization to develop a show about homophobia. So kudos to the conference organizers for no longer turning a blind eye to the gay thing. Uptight poz gay guy must have been frothing at the mouth, though, by the end of it.

But it’s stigma of a kind, whether from within our community or not. Even if that stigma comes from a desire to be inclusive, to be considerate of other at-risk groups, to avoid rocking the boat, to make sure that folks know that HIV can impact everybody (because it can, but who doesn’t know that now?) - it’s stigma. Some would prefer, I think, that gay men, 60% of the newly infected as it happens, be silent, take a seat at the back of the bus. It’s a terribly misguided attempt at being pc, I think

I should have spoken out at the time, of course. I will in the future.