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Roundtable
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The AIDS Exception: Privacy vs. Public Health
Round One -- Response
Posted on June 3, 1997

CHANDLER BURR

I was having a phone interview one day with an exceptionalist and he said, quite forcefully, "The best thing you can do in this article is communicate to people that our side is not about civil rights. We, just as much as the traditionalists, are about good public health, and the debate is not civil rights versus public health but one view of what is good public health versus a different view."

So let me immediately agree with Winnie Stachelberg's first paragraph, inasmuch as we must ultimately evaluate the efficacy of both exceptionalism and traditionalism not by how well they protect civil liberties but by how well they control diseases. But then let me also state that while exceptionalists can argue all they want that their policies are aimed at controlling disease, I am convinced that the public-health orthodoxy defended by Stachelberg and exceptionalists like her is not, at its most fundamental level, about the containment and eradication of communicable diseases in populations. It is about civil rights. It is about protecting people from political and emotional violation and not really about protecting them from disease. I understand that people, backed into a corner, will use whatever arguments the public will find convincing to support what they believe to be Right and Good, and I never doubt that Stachelberg personally has the best of motives, but the metamorphosis of exceptionalist arguments is as plain as day: it went from pure "civil rights, civil rights!" a few years ago to today's "this isn't civil rights at all but merely good public health."

I suppose I should admit that I am somewhat cynical. As a journalist, my job is to sift through assertions to find facts. When one side repeatedly makes false or misleading assertions, I get suspicious. Stachelberg makes the alarmist assertion that traditionalists are promoting "mandatory testing" for everyone. This is a lie. No one who is at all credible is promoting this. Coburn is not -- as everyone who looks at his bill will know -- and if this accusation is not leveled at Coburn, at whom is it aimed? Traditionalists are urging "routine testing," which is done for tuberculosis, hepatitis B, syphilis, and other diseases. People are talking about mandatory testing for one very specific group: newborn babies, who are also mandatorily tested for PKU and hyperthyroidism. Given what can be done for newborns medically, it is gross irresponsibility not to ensure that every case of newborn HIV infection is found.

Many of Stachelberg's other contentions are equally unconvincing. If you read her statement carefully you see that other than what we all agree on -- that people need to know if they're HIV-positive and then need to start treatment -- it boils down to a single assertion: traditional public-health measures don't work. What is missing is proof. ("Traditional strategies," she writes, "the success of which is spotty at best." Evidence, please?) In my Atlantic article I cite studies showing that routine testing, confidential reporting, and voluntary partner-notification programs are effective at identifying and notifying people who are HIV-positive, which is the name of this particular game.

I come away equally empty-handed after reading Joel Gallant's statement. To be honest, I just don't understand it. He begins by saying, "We should have used traditional methods" but then seems to say, "The traditional methods are the new methods." He continues, "The new methods haven't been tried." Well, if we haven't been trying the new exceptionalist methods and we haven't tried the old traditionalist methods, what, exactly, have we been doing? Then he writes, "What keeps people from being diagnosed and treated is ignorance," and advocates more education. So his solution is more of the same despite the fact that he acknowledges immediately that what we're doing right now isn't working. And he opposes "draconian measures restricting the civil liberties of our citizens." What draconian measures? Please, we need a bit of perspective and an absence of melodrama. Routine testing for a virus is draconian? What about for the dozens and dozens of viruses and bacteria we routinely test for? This fear is, at this point, simply self-perpetuating hysteria.

Stachelberg does possess some good, concrete ammunition. "A recent study of Baltimore health-care providers revealed that 24 percent of those providers had at least one female patient who experienced physical violence following the disclosure of her HIV status to a partner." This is what happens -- and it is terrible-- when you do partner notification for any disease. It doesn't contradict the fact that partner notification still identifies huge numbers of infected individuals more effectively and at lower cost than anonymous testing. One epidemiologist said to me he'd "rather the woman get hit and get into treatment" if that's what it takes than that she "remain ignorant of her HIV status, untreated, and unhelped, which is the alternative."

Stachelberg also argues, "When the state of Oregon switched from confidential name-reporting to anonymous testing, the number of individuals seeking testing increased significantly." Now, this one does give me pause. If it's true we have to consider it carefully. I'd like to see the study, but I don't dismiss this at all. The more Stachelberg can muster data like this, the stronger her case becomes in my eyes.

Coburn, though, presents some ammunition of his own: "North Carolina recently eliminated anonymous testing, and HIV testing increased by 45 percent." I think the difference in whether people will accept confidential (as opposed to anonymous) testing will be made by something unquantifiable: a difference in attitude that says AIDS is, simply, a disease. All serious diseases are difficult. All serious diseases pose emotional problems. Battling all serious diseases requires expenses and tough medical regimes. Why the obsession with the difficulties, emotional problems, expenses, and medicines of this disease versus all the others? It's simply absurd. AIDS is a disease.


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Roundtable Overview



Introduction and opening questions, by Cullen Murphy

Round One  -- posted on June 3, 1997

Round Two -- posted on June 19, 1997

Copyright © 1997 by The Atlantic Monthly Company. All rights reserved.
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