It's a Puzzlement

Part of my job involves meeting with advocates. Each of us in the office has various issues assigned to us, and when advocates call and request a meeting about some issue they're concerned about, we meet with them as a matter of course. So, today I had a meeting with an AIDS advocate who is very concerned about changes proposed by the Governor in his Executive Budget that would decrease the compensation that pharmacies receive for medications for Medicaid and ADAP (AIDS Drug Assistance Program) participants. The decrease will not allow the pharmacies to make any kind of a profit. This is not just tough luck during tough economic times. Y'see, many 'specialty pharmacies' have come into being that specifically work with people living with HIV. They are skilled in HIV drug interaction issues, and also have devised many creative ways to help people adhere to their complicated treatment regiments.

So far, so good, right? Well here's the issue. I've known this advocate in particular for over ten years. He and I were both members of ACT UP here in New York City. He was then a scary guy. He was always dressed in fatigues, and had this frightening, near hysterical way of speaking. There was something about him that was not quite real, as though he were aping people within ACT UP who, because of their intelligence and dedication, had the respect of the group as a whole.

And, Scary Guy had this weird habit. He would often say, "For those of us who are living with this virus" and then, sort of sotto voce would say, "...and we're all living with AIDS..." Which, y'know, could have been a bit of PC rhetoric. But one night at a meeting, I was sitting with my buddy George Catravas. George was living with AIDS, as in, having HIV in his bloodstream, gut, lymph nodes, nervous tissue, and other places. George turned to me and said, "Is he HIV positive?" I replied, "I can never figure that out." So George and I approached Scary Guy, and George asked him point blank. After much hemming, hawing, and double talk, Scary Guy admitted that he was not, in fact, HIV positive.

So when Scary Guy resurfaced after all these years, I was sort of appauled to learn that he was a member of the People With AIDS Advisory Group of a New York City HIV planning body. And, he claimed he was the regional representative of the National Association of People With AIDS. Could it be that he had lied about his HIV status to get himself into these positions?

At the meeting, he spoke so persuasively about his experiences as a person living with HIV, that I got to thinking that I must have it wrong. Or, possibly, sometime between 1993 and now, he had seroconverted. Always a tragedy.

And then came the kicker. He was talking about the plight of veterans who are living with HIV, and he said, "And I know, because I'm a veteran myself, having received two purple hearts from my service in the Gulf War." Uh... the period of time in which I knew Scary Guy encompassed the first Gulf War. I specifically remember him at Day of Desparation, an ACT UP demonstration that took place right in the middle of the Gulf War. I think there's even video tape of that demo showing him.

So he lied. And so I don't trust anything he says. And I think he's running around representing to people that he's HIV positive, when, in fact, he isn't. Not that he would be very unique. I heard a few months ago that a certain treatment activist sort of came clean about being seronegative after having lied about that for the past fourteen years or so. And promptly was out of a job.

It's a kooky thing. People who had AIDS in ACT UP were viewed with respect, and I suppose that people who didn't have much in the way of scruples who wanted to get respect found an easy way to do that in just saying, "Me, too" when the question came up.

I have no idea what, if anything, to do with this information.

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