The stats are incredibly depressing. The one that I keep seeing this week is even more depressing - 3 out of 4Americans with HIV don't have their infections under control. It gets worse.
About 1.2 million people are living with HIV in the US but about 240,000 don't know they are infected. Each year, about 50,000 people get infected with HIV in the US. Getting an HIV test is the first step to finding out if you have HIV and getting medical care. Without medical care, HIV leads to AIDS (acquired immunodeficiency syndrome) and early death.
Apparently, millions of sexually active Americans have never even had an HIV test. There's no excuse for that.
At least for those of us with insurance, HIV isn't a death sentence, not anymore. But if you don't even know you're infected, it can become one incredibly quickly.
I hesitate to write the rest of this post.
I remember a time, in the 1980s, when it seemed that being gay meant having sex that killed you, sex meant getting AIDS and dying. Sex was a death sentence. AIDS was an enemy that chilled the soul:
For years, international AIDS conferences were very somber. A chill would run up my spine as I sat in dark vast lecture halls, hearing more bad news. The numbers of patients rose ever higher around the world. Prevention was failing. No treatment worked. AIDS quilts would hang around us -- grim reminders of our losing battle.
In the small town I lived in, AIDS was a whispered threat, a rumor, a plague that had the advantage of killing all the right people. Running away from that hellish small town to anyplace sane and safe meant facing the very real possibility of infection, illness, and an early death. A knife edge to walk at 17.
Back in the day I had an ACT-UP Silence = Death t-shirt. I'm sure it's still in a box somewhere. A relic of a time when gay men watched their world crumble around them as death stalked every kiss, every touch. The crucible of AIDS forged the modern gay community. AIDS forced gay men to organize politically in ways they hadn't before but it also stigmatized gay men as more than sick, as carrier of illness. The religious right's hoary talk about gayness as a disease, a sickness, seemed to have been literalized with AIDS. I sometimes think the right's furious resistance to any law or policy that might benefit gay people is grounded in the firm belief that being gay is an illness and it is contagious and it must be contained and that AIDS is still proof that God is punishing gay people.
When sex could be a death sentence, it become weighted with complexities and fears. Sex wasn't safe or fun or liberating and free love was a sick joke from the 1960s. I know too many gay man who as teens in the 80s swore they'd rather not have sex than get AIDS or who embraced fatalism - I'm going to get IT and die, I might as well have a good time along the way. Most of them survived. In the 1990s, as the first treatments began to be available, there was a sense of relief - you could delay dying and maybe not be so sick and then the protease inhibitors and the drug cocktails started appearing. I remember seeing documentaries about AIDS in the late 1990s and watching as people talked about learning to function with the side effects of the powerful and sizable doses of drugs required to keep them alive - regular tests of liver function, suddenly putting on weight. For some people, it was like coming back from the dead, before the drugs they were at death's door and now they were figuring out how to find a job and pay the rent. Health insurance was literally a matter of life and death and a quick trip to the doctor's office was a thing of the past. I know more than a few gay men who are borderline hypochrondriacs - the first sign of a sniffle and they're getting testing for HIV, cancer, and Mad Cow disease.
The 1995 film Jeffrey chronicled in the life of a gay man - Jeffrey - who announced that sex shouldn't be safe and negotiated and scary and so he was giving it up, just in time to fall in love. Watching it when it was released it felt oddly true; within a few years it had become a relic. If you ever need a good cry, watch 1996's It's My Party, about a gay man who realizes he's at the end of good health and decides to end his life; oddly unschmaltzy, it's an emotinally devastating film.
Utah's gay men's health summit was one of the biggest events in the gay community - hundreds, maybe thousands of attendees. Gay men, by the late 1990s, had begun redefining what it meant to be a healthy gay man. You could have HIV and still be healthy. What did it mean to be healthy, physically, spiritually, emotionally, financially? The health summit addressed all those issues and more. At the summit, you saw what Margaret Cho described as gay men's sense of fun and frivolity around sex, but also something darker, a shadow in the playground. Having learned to fear sex, gay men were trying to figure out what, besides sex, it meant to be a gay man.
Yet today, it seems improbable to think that not so long ago, AIDS = Death and staying silent was an impossible option. ACT-UP activists were sometimes self-defeating and puerile, but their anger was well justified.
John J. McNeill recounts a story of a priest called to administer last rights to a gay man dying of AIDS; surrounded by the gay man's friends, former lovers and current lover he prayed with them and administered last rights. As he drove from the hospital, the priest felt the hair on the back of his neck stand up and realized that in that room he had been in the presence of God. AIDS transformed gay men from spiritual outcasts into avenues of god's presence. Tragedy did not always ennoble but it changed how gay men saw themselves and the world. You'd be hard pressed to walk into a church anywhere in this nation and not see a gay man playing a key role. AIDS gave gay men permission to love the spiritual, to embrace it, to fearlessly take on the role of shaman.
A generation of gay men were devastated by the disease. The next generation of gay men were scarred and scared but touched more lightly by it. I still remember the clear eyed way my friends would talk about knowing death was coming to them early. Not all of them were wrong. Suddenly condoms were a way of life and most gay men developed a facility with them that would astonish the most experienced of sex educators.
I'm not sure what it means to stand on the dry land and watch the deluge and know that it could pull you in and yet it never has. I'm not sure what it means to know that you avoided disaster through a combination of dumb luck, good timing and relentless lectures about the need to practice safe sex. I lost a few friends and acquaintances to AIDS. For my entire adult life, a regular HIV test has been part of my life. It has grown increasingly less traumatic, less fearful as the years have gone by. Now in my 40s,
Tomorrow, December 1, 2011, is World AIDS Day. It's also thirty years since doctors first began diagnosing gay men with what, for a time, was called GRID - gay related immune deficiency. Millions dead, millions infected. The scientific community has done astonishing work in combating this real world horror.
The world keeps turning. AIDS isn't inevitable. People don't know enough, though. 1 in 5 people in the US who is HIV positive doesn't know they are positive. One in five. Treatments that could save lives aren't available in large chunks of the world. We are in the company of those who have gone before and they can no longer speak; we must. Silence still equals death. Our silence equals death for people we will never meet. We cannot stop.
Cross posted at OneUtah.