Wednesday, June 03, 2009

Every great cause begins as a movement, becomes a business, and eventually degenerates into a racket.
--Pat Buchanan
When did the AIDS movement become a racket? And what is it going to take to go back to being a movement. At this point, HIV/AIDS organizations are clearly a business. The degeneration to being a racket has happened perhaps most clearly in the arena of HIV-testing as organizations seem more invested in reporting demographics and meeting numbers than doing what they can to get everyone to know his/her status. This is not to say that the people who work in these organizations are conscious of this. I think it is more a matter of a corporate “groupthink” that takes over.
Here’s what I mean:
At a meeting of AIDS organizations last week that is planning a series of events around National HIV-Testing Day (June 27), I mentioned that one of the things I am working on with some colleagues is advocating for FDA approval and use of home-based HIV tests. The response I got from was swift and harsh. The people that work for various organizations, from public health to HIV/AIDS to glbt support, were adamant that home-based HIV-testing was a public threat, that people NEED counseling, and that with home-based testing there is no way to track and report accurate numbers (as if estimating between 40-65,000 new cases a year is “accurate”).
Many of the reasons for opposing home-testing are familiar, and not unjustified. Certainly, many people who do go for HIV-testing do benefit from education and counseling. And, yes, from a public health standpoint, it is somewhat important to be able to track the virus by knowing some of the demographic and transmission data. But the fact is that, as one person openly admitted, the reason I got that kind of reaction was that I was touching on people’s livelihood – jobs. Now, I am not against jobs for people that need them, but when they come at the expense of a mission, then we need to take pause and have a real conversation, something this group was not able to do at that time.
The fact is that the current system of providing HIV-testing is not accessible to the broad community. Clinic hours are limited, clinics are not always accessible, and certainly, despite pledges of confidentiality and anonymity, it is hard to maintain these in a public arena. Furthermore, the pre-test questionnaires can be off-putting, especially for people who are nervous about being too forthright about their lives. Consider the cases of people who have been scorned by family, church, or military because they were honest about themselves. To ask them to trust strangers in a clinic is a stretch. Personal physicians are another option but, despite Centers for Disease Control guidelines, this is not even close to happening routinely. I have heard a few stories of openly active gay men needing to explain why they are asking for HIV tests. In one case, the man was not offered an HIV test by two successive doctors despite a persistent rash (he subsequently was diagnosed with full-blown AIDS). The bottom-line is that even if the current system worked optimally it would not be easily accessed by everyone, and the current system hardly works optimally.

My own personal experience: after the above-mentioned meeting, I decided to see how the current public testing works, so I went to the local (DC) HIV-testing clinic. I got to the receptionist, and asked how I can get an HIV-test. He gave me a clipboard with a 4-sheet questionnaire to fill out. I said I don’t want to fill out any information, and he indicated three areas that needed to be filled out (including a place to put my name and signature). I returned a few minutes later, after scanning questions about my sexual identity, sexual preferences (meaning what kinds of sexual activities I engage in), and drug use, and said I did not want to answer any questions. His first response was that I could not get tested if I did not answer the questions, but that they were not going to be reported. I pushed the matter, saying that I thought the tests were anonymous. He called for another person to come over, who then said he would see if he could get someone to test me. A few minutes later the tester came and met me and took me back. Briefly, she was great – compassionate, understanding, and ever-so-gently trying to squeeze information out of me. After completing the test, I returned to the waiting room. While waiting, she called two other people into her office, asking “are you here for testing?” Basically, by the time the tester finally meets with a person, many people in the waiting room know why you are there. In addition, despite the fact that the questionnaires are not mandatory, anyone who does not know his/her rights is not informed.
So I am now more convinced than I was before that the present system is not accessible to all people, and is actually somewhat intimidating. What we should be doing and will continue to do is to advocate for and even start to offer options for people. At a minimum, it seems there is fairly universal agreement that home-based testing could be useful for the following:
• Women who take home-pregnancy tests
• Couples where one of the partners is HIV+ and the other is HIV-
• People who have been tested before and like to make it a routine
• People who are feeling intimidated and or a need for complete confidentiality and anonymity, but are trying to be responsible
• People in rural and/or conservative areas where asking for an HIV-test raises suspicions
• People who want to be tested, but current testing systems cannot accommodate great numbers or are threatened with losing funding because of demographics.

For the next month, we will be stepping up our efforts to raise these issues and to advocate for more options.

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