Thursday, September 03, 2009
I just got back from a presentation at the DC Department of Health's AIDS Administration. Let me start by saying that all the people in the room were caring people who have their hearts in the right place, so this is not about them as individuals. This is, however, an absolute slamming of "AIDS, Inc." - an institution that has completely taken over and has no intention of going away.
Here's why: The presenters gave a lot of data about the sexual behavior of "msm" (men who have sex with men). What the data showed is that msm still make up the highest number of people contracting HIV and that sex and drugs impact behavior. There were lots of slides with numbers, statistics and terms - including one item that showed that 64% of respondents knew the HIV-status of their last sexual partner. The problem with this last issue - which I raised - was whether this information was reliable. The presenters said that it was a good thing that these people think it is, but I would actually say that it may not be good - it could be reinforcing the false sense of security that you could just tell if someone has HIV based on their word and how they look.
There were many other issues I had with the presentation (including the usual - what does any of this tell us that changes what we know? how does this help get people to get tested? How does this change the stigma? etc.). The fact is that this study only reinforces the stigma of HIV as a gay man's disease. But the real kicker is this: these presenters referred to this study as their "baby", that it's only three years old, and that they will be replicating it to two other high risk groups over the next 6 years (3 years each group), and then repeat as they fine-tune their data collection. Meanwhile, there were giggles and chuckles as they talked about the limitations of their work, how they defined msm, and how good they all feel about the data.
ARE YOU KIDDING ME?! We are talking about lives here. Where is the talk about stopping the spread of HIV NOW! Where is the concern that this is not a gay disease, a black disease, a women's disease, but a public health issue?
I did raise the question, with passion. It was heard, and I think registered. I also wonder, however, where is the community outrage?! These people are talking about multi-year studies that tell us what we already know (really, it seemed like what they were studying was a new methodology of epidemiological data collection rather than collection of useful data).
There was some talk about the high levels of support from among people ages 18-34 to make HIV-testing routine in doctor's offices. Two things about this (I mentioned both of these): this is the age group least likely to have a routine around medical care so it's less of a reality, and this is a group that is most amenable to testing, so let's get the tests to them. I made this impassioned plea: the community is ready to take action, to self-administer and make HIV-testing more portable. We either need people like these epidemiologists to help us make the case statistically, or to get out of the way so we can do it.
What is clear, based on all the meetings and conversations now at the highest levels of HIV-administration at both municipal/state (here in DC, sort of the same thing) and federal levels, is this: all people mean well and want well, but the bureaucrats are limited in their power, and the epidemiologists are calling the shots. Unfortunately the shots they are calling are for more studies. We know enough. We need the psychologists, social scientists, sociologists, theologians and artists to now step up and create more options. And, most importantly, the community voice and passion must be raised. This is the only way that change will really happen in any timely matter.