Monday, October 23, 2006

Testing Upheaval

“We want to go beyond ‘Who did you have sex with?’ to ‘Who do you hang out with?’” - Dr. Thomas Frieden, New York City Health Commissioner

One day last year, I checked in with the social worker at the clinic where I receive HIV care to get some paperwork out of the way. Part of her job as my social worker is to make sure I'm not isolated, since people with AIDS are at risk for social isolation. I mentioned to her that I had gone to the excellent New York Gay Film Festival with my friend Robert, and we'd had a great time at the afterparty. A strange thing happened the next time I visited my primary care physician. The doctor asked me, "who is Robert?" At first I didn't know what she was talking about. "You went to the movies with Robert. Who is Robert?" Oh, now I got it. The social worker, doing her job, mentioned the film festival in her notes; my doctor had read those notes. "Oh, Robert is a good friend. I've known him twenty years." "I thought he was your partner and you hadn't told me about him." Oh, now I really got it. This was about contact tracing. Anything I say to the social worker can be reported to the Department of Health.

Obviously, from that point on, that doctor could no longer function as my doctor. And I wouldn't say anything to the social worker either.

So this doctor thinks its her job to keep track of who I go to the movies with, and yet still thinks she can function as my doctor? I'd never seen a physician act like this before. I didn't know it at the time, but today I know the doctor was acting on guidance from the Department of Health. You really have to wonder about a Health Commissioner who can't see how bad an idea this is. It's just like one of those characters from Star Trek who are scientific geniuses but are completely baffled by human behavior.

The kicker is this: the next time I saw the doctor, she asked me, "is there anything you want to confide in me?" No, darling, that train has left the station. At least if I get picked up by the police, they are required to give me my Miranda warnings. This is an element of Dr. Frieden's idea of 'modernized' AIDS care - anything I say to my doctor can be used against me.

Dr. Frieden calls for the elimination of written consent as part of routine HIV testing, in order to test more people. Routine HIV testing is necessary because people stop having unsafe sex when they find out they are positive. "Positive people act responsibly," says the doctor. I'm glad to hear the Commissioner say that, but it is a convenient change in tune from what we heard when contact tracing was pushed through the legislature. Back then, we were 'AIDS Monsters' out there deliberately infecting everyone we could find. When the DOH asks for quasi-mandatory testing, we're so responsible. When they want to expand contact tracing, we're serial infectors: “In addition, the policy of offering partner notification only at the time of diagnosis ignores the continuing high-risk sexual behavior of many HIV-positive persons.” And on the subject of credibility, let's not forget the recent supervirus fiasco; we can now see Frieden was just lobbying for his radical changes in AIDS policy.

I certainly hope that Dr. Frieden's predictions on the link between risk behavior and HIV testing come true, but I wouldn't play the stock market based on the commissioner's fortune-telling (I'll come back to this stock market analogy). Frieden's argument ignores the fact that he is proposing to radically change the law for HIV testing. How positives behave under the existing rules may not illuminate how positives behave under his proposed changes. Without pre-test counseling and written consent, many of Frieden's new positives will be manipulated into testing before they are psychologically ready; I'd expect their behavior to be quite different from today's positives. If Dr. Frieden were an investment advisor and made a public offering on such questionable reasoning, I'd close my checkbook and run out of the room.

Dr. Frieden's proposal to routinize HIV testing may trigger increased risk-taking by negatives. A major problem in prevention today is the false idea that HIV is 'no big deal' because it is temporarily treatable; Dr. Frieden would have doctors reinforce that dangerous misperception. I remember in 1984, right after HIV was first identified, a doctor on TV declaring that it was now 'just a matter of time before we find a cure.' I took that as medical authority that I didn't have to worry about AIDS. If a doctor had ever suggested to me, even implicitly, that HIV was just 'routine', I would have interpreted that as medical evidence that I didn't need to fear AIDS, and would have increased my risk behavior.

Despite his spectacular scientific intellect, Dr. Frieden shows an alarming misunderstanding of the psychology of AIDS. How else could he ask for broad Kommisar-style powers as Health Commissioner and not realize how that would cause patients to distrust doctors, clinics and HIV service programs? How else could he use data obtained under the existing testing rules to predict behavior in a revolutionized testing environment? How else could he imagine that today's medical treatments for AIDS have eliminated HIV stigma? Anyone who has been a victim of stigma knows that stigma is not a function of fact.

continued . . .

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