June 15, 2011
Since June is the month in which we celebrate Pride, I thought it might be appropriate for me to address a question to my fellow members of the LGBT community, and in particular to my gay brothers. I want to talk about an issue our community used to think was really important, but which seems to have fallen off the radar screen recently. That issue is HIV.
HIV/AIDS used to be an existential threat to our community, and we treated it as such. Nowadays, medical science has made HIV a chronic illness, at least for those of us lucky enough to have access to very expensive antiretroviral therapy. Nevertheless, HIV remains a tremendous health problem, and it's still rampant among gay men. Yet our community seems to have decided to direct its attention elsewhere, and I'm trying to figure out why.
I came out in 1981, the year AIDS burst onto the scene. So it's been a factor throughout my entire life as a gay man. First, it was a dreaded plague to be avoided, and much later, it became a disease with which I live. Back in the 1980s, the gay community (we weren't yet the "LGBT community") coalesced around the fight against AIDS. Frankly, we had no choice. Gay men were dying all around us, and no one in power gave a shit. A threat of such magnitude tends to focus the mind, and AIDS thus unleashed a period of furious activism, epitomized by ACT-UP's direct action tactics. That activism got results, and it brought gay people and gay issues into the spotlight. In my view, it was a pivotal moment for the entire movement, because AIDS forced us out of the closet and into the streets.
In part because of that successful activism, antiretroviral therapies became available, and with the arrival of protease inhibitors in the mid-90s, AIDS ceased to be an inevitable death sentence. Since the mid-90s, ARVs have continued to improve, and we now have an arsenal of highly effective drugs that will keep the virus in check. But these drugs are only therapies, not cures, and people with HIV can still suffer all kinds of health complications. Some of those are caused by the virus, and others are caused by medication side-effects. In short, while this disease is treatable, it's anything but trivial.
In the beginning, HIV/AIDS was considered an exclusively gay disease. Fortunately, we've largely moved beyond such homophobic characterizations, but we gay men need to realize that HIV still has a disproportionate effect on us. According to a Centers for Disease Control study of men who have sex with men in 21 U.S. cities, 19 percent of MSM are HIV positive. Back in 2008, the CDC published an estimate of new HIV infections in the U.S. The CDC's analysis showed that of the new HIV infections occurring in 2006, some 53% were the result of male-to-male sexual contact. While HIV may no longer be an exclusively gay disease, by the look of things it's going to remain a predominantly gay one unless we, as a community, give it the attention it deserves.
So what are our advocates in the national LGBT organizations doing about HIV these days? Not enough, if you ask me. I think Kellee Terrell, editor here at TheBody.com, pretty much summed up what's going on when she recently wrote:
But many of the large, national LGBT organizations -- the ones that have the most visibility, influence and funding -- need to take some responsibility for why HIV has fallen off their own community's radar as well. While some of these groups will occasionally lend a hand to HIV/AIDS organizations when it's convenient, they essentially have turned their backs on the epidemic and have taken up more "relatable" platform issues, such as marriage equality, adoption and "Don't Ask, Don't Tell." And while I understand that the stigma of the early days has helped shape homophobia and misconceptions about gay people, now is the time for LGBT people to let go of that hang-up and re-own this epidemic as if it's 1985. HIV is still a gay disease.
Lest you think Kellee's got it wrong, take a look at the web sites of our national LGBT rights organizations, and you'll see that HIV is hard to find. Take the home page of the Human Rights Campaign for instance. There you'll find links to stories about marriage equality and transgender inclusion, but other than the obligatory recognition of the 30th anniversary of the epidemic, there's nothing about HIV. If you click on the "Issues" link at the top of the page, you won't find HIV listed. What you will find is a tab for "Health." That's the first place you'll find HIV mentioned:
The Human Rights Campaign's health information has historically focused on issues surrounding the HIV/AIDS pandemic; however HRC is broadening its scope to include a wider variety of issues such as lesbian health, healthcare discrimination and the Healthcare Equality Index (HEI), a project that provides a quality indicator for healthcare related to LGBT people.
So HRC has "historically" focused on HIV but is now branching out. Don't get me wrong, I'm all for attacking issues of lesbian health and health care discrimination, but I get the uncomfortable feeling that HRC sees HIV as yesterday's fight.
Looking at the National Gay and Lesbian Task Force's HIV/AIDS issues page all I find is an article talking about stuff that happened in 2009. Has NGLTF just not updated this page, or has it really found nothing worthy of note on HIV in the past two years?
In my home state of California, things seem to be even worse. Here's what you'll see if you go to Equality California's page on "Health":
The newest project of EQCAI, the LGBT Health and Human Services Network is a statewide coalition composed of LGBT and allied organizations that provide non-HIV health and human services to LGBT Californians and their families.
You read that correctly. EC has devoted its "Health" page to crowing about a new initiative that specifically excludes HIV from its purview. EC has offices in San Francisco, which was the epicenter of the AIDS epidemic, so it's hard to believe they can be this clueless. Incredibly, they follow up with this:
The Network focus is on state level policy issues that impact health and human services for LGBT people in California.
Our primary goals are to prioritize the health policy issues impacting the LGBT community, to connect existing organizations with statewide funding sources that have not necessarily been directed toward LGBT communities in the past, and to build the capacity of our LGBT health and human service organizations.
Sorry, but can you name an issue that impacts the health of the LGBT community more than HIV? What universe do these people live in?
It's not just California, either. Head on over to the Empire State Pride Agenda's web site and you won't find HIV anywhere among their list of issues. You won't find the topic in their site map. You have to use their search engine before you come up with anything related to HIV.
Mind you, I know these organizations do work on HIV, and I certainly appreciate that. Indeed, if it weren't for LGBT groups, there'd be no HIV advocates outside of some underfunded AIDS service organizations. My complaint is that they're just not giving it the priority it deserves.
Now, I can't say for sure why that is, but I'll share my theory with you. I think that most national LGBT organizations have opted for what I'll call an "assimilationist" strategy for achieving equality. That is, the strategy isn't trying to change the rules of heterosexual society so that we LGBTs can be accepted on our own terms. Instead, HRC and other advocacy organizations have decided the way to go is for LGBTs to convince straight people that we're just like they are. Hence the focus on issues like adoption and marriage equality -- issues that are, to use Kellee's term, more "relatable" because they're things that make us seem just like straight people.
If I'm right about that, you can see why HIV would be viewed as a problem. It's a sexually transmitted infection. It makes straight people think about the "sexual" in "homosexual," and I'm sure it conjures up disconcerting thoughts about things lots of straights find distasteful -- like anal sex. And if you're trying to persuade straight people that you're no different than they are, butt sex is probably the last thing you want to bring up. So poz guys like me are a PR problem for HRC president Joe Solomnese and the assimilationist crowd. We're an embarrassment, and we make for bad optics because we don't fit this new idealized image of the committed, monogamous, middle-class gay couple that just want to get married and have kids.
And since we're on this topic, I'll raise a related and uncomfortable subject. This discomfort with poz gay men isn't limited to the political arena. There are a lot of seronegative gay guys who feel they have nothing in common with those of us who are HIV positive and who don't feel that HIV is something that's relevant to their lives. I sometimes wonder whether a large segment of seronegative gay men just wish we pozzies would disappear. Then they could get on with their lives, free of the stigma that comes from being part of a population that's so closely associated with a deadly disease. Believe me, guys, I can understand the urge. Homophobia is plenty enough to deal with. Having to combat the perception that you're a disease carrier, even when you're not, is a burden I know no one wants. But if we poz guys can't count on our negative brothers, to whom are we supposed to turn?
So that's my take on things. Now I'd like to ask all of you LGBT readers what you think is going on. Why has HIV fallen so far down the list of our community's priorities? Why aren't our state and national organizations putting this issue in the forefront? I hope you'll agree that we can't afford to be complacent about this. Not with one-fifth of gay men already infected and more infections occurring every single day. Can't we at least acknowledge the magnitude of the problem and demand more from those who are supposed to be our advocates?
I'm leaving the floor open to you now. Hope to see you in the comments section.
Read more of Outlier: My Unusual Journey With HIV, fogcityjohn's blog, at TheBody.com.