An important twist in my long and winding road was when I resigned from my job at United Way in Boston, at the same time as my friend Wayne S. Wright, and for basically the same reasons. (No reason to go into that, it's a good organization that's worthy of your support.) I set up a consulting practice to work my way through grad school, and Wayne became the first real executive director of the Multicultural AIDS Coalition in Boston. (I say "real" because there was a caretaker exec appointed to guide the nascent organization while they sought a permanent incumbent.) Wayne started referring me to various community based organizations involved with HIV prevention and services.
At that time -- the early 1990s -- there was no effective treatment. HIV meant you eventually get AIDS and then you die, in a very unpleasant way. And that was happening to a whole lot of people including, ultimately, Wayne. Unfortunately, I can't find his full obituary free on line but but this is the lede and it should give you a pretty good idea of what a great fellow he was. I was luckier than many people, I just had a few friends die of AIDS, but I've talked with a lot of gay men for whom the plague years meant one funeral after another and the destruction of entire communities -- very much like the Black Death and other plagues must have been before real medical science came along.
Effective treatment for HIV became available just the year after he died, and everything changed. One of the most prominent AIDS-related service organizations, the Hospice at Mission Hill, closed because HIV was no longer about death. In its place rose the Boston Living Center, where people go to help themselves do just what the name says. As a matter of fact, people who were in the hospice, weighing 80 pounds and ready to die the next day, rose from their beds and their bodies astonishingly reconstituted and they suddenly had to contemplate the sorrows of life as vigorous and healthy young men once more. We call this the Lazarus syndrome.
So when I read that the Global Fund to Fight AIDS, Tuberculosis and Malaria is too broke to make any new grants for three years my blood boils. We've given up on the goal of treating everybody because, well, we just can't afford it apparently. There's something else we need to do, although I'm not clear what that is. And in case you hadn't heard, people who get treatment and have suppressed viral loads are not infectious. That means, if we treat everybody, we can end AIDS forever. We can eradicate it. But it just isn't worth it.
Friday, December 02, 2011
Yeah, it's personal
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