AIDS: Collecting Names, Pt. 2

Asking around, it was clear that, while most involved parties had certainly heard of the new law?which stipulates that doctors must turn over the names of their patients with HIV (and their partners) to the Health department?few believed that anything was actually happening. People seemed to assume that the law simply hadn't been put into motion yet. But they were wrong.

"We're getting data, and it seems to be working as we had hoped," says Kristine Smith, from the NYSDOH's public affairs office. "We don't have final figures to release at this point, because the regulations allow for a certain amount of lag time before physicians have to report. Then we go to great extents to make sure we're not getting the same patient report from various sources?we need to know it as one case and not three cases. So we probably won't have any official figures until some time after the first of the year. What we're hearing is that it's going well."

For the most part, she said, doctors are cooperating?there had been some question early on as to whether or not they would. And for those who don't, I was told, there's an important layer of redundancy?the laboratories that do the actual testing are required to turn names over as well. "And then we can check back with the doctor [who didn't report]."

She did say, however, that the actual partner notification end of things?in which government officials contact all the names turned in to tell them that they've had contact with someone who was HIV-positive?has had mixed results.

"We're getting instances in which physicians are notifying us that they have, in fact, handled the partner notification [themselves] when the patient...has wanted them to. In other instances, they're telling us that they would like the state or the county partner notification staff to take that on?which is also a viable alternative."

While there had been some talk that the ACLU and the NYCLU were considering a lawsuit to overturn the law, those turned out to be mere rumors.

"That certainly is premature..." said the NYCLU's Art Eisenberg, when I asked about a potential suit. "At this point, we've done some legal research, but I don't think it is fair to say that a lawsuit is in the works."

Matt Cole, who heads up the ACLU's AIDS Project and is considered an extremely powerful man when it comes to issues like this, was a bit more elliptical.

"Partner Notification laws only work if the person who's getting tested cooperates," he said. "There's no way that I know of to actually make these things work forcibly. As far as I know, most public health authorities feel that in most circumstances it is better to try and work with people than to simply force things on them. You get better results that way. And I think the ACLU's position is fairly easy?if the government wants to take control of private information, it's got to have a good justification for it. If the government's own public health people say, 'This is really not the best approach,' then it doesn't."

He also pointed out that over these past few years, the ACLU has made a point of becoming involved with the adoption of partner notification laws across the country.

"In many of the states," he said, "Partner notification plans are things we feel do respect rights to privacy and balance them very carefully..."

Then he noted, "The interesting thing about all this is that most of the time, when you take the ideology out of this and you lower the volume, what civil libertarians want to do and what public health advocates want to do is frequently the same thing."

Talk like that worries some people.

"The moment at which the civil-liberties types turn their backs on the issue," one man said, "is an important moment."

Even GMHC?one place you'd think would be extremely concerned about all this?has put up a page on its website, trying to dispel any fears people might have about the law. And the GMHC clinic is cooperating with the government by turning over names?though not without certain reservations.

"We were involved before the law was passed in advocating an alternate system, which was a unique identifier system, as opposed to a names-based system," says Matthew Tye, GMHC's associate managing director of programs. "Yet we definitely understand the need, from an epidemiological standpoint, to count the number of cases of HIV in New York state."

Since the law passed, they're compelled to comply with it, as is every other testing service in the state.

"When someone calls or comes in to receive counseling or testing services," Tye said, "we right away?even at the point of making an appointment?inform the clients that we offer confidential services, and that if they were to test positive, we'd be required to report their name."

Hayley Gorenberg is one of the people who's very worried about the potential effects this law might have. A lawyer with Legal Services for New York City, Gorenberg oversees a group of doctors and lawyers who comprise the Confidentiality Task Force. It's their job to keep track of any names that are leaked, and any unfair use of the information being gathered. In a way, you could say they're preparing for the worst.

"There's been so much discussion about the potential that it could deter people from testing and treatment," she told me. "Essentially what it comes down to is, this law was created as a public health law. Is it really going to serve the public health, or not?"

Her primary concern is money. When the state has a limited number of funds for AIDS-related programs, the fact that the notification program needs millions of dollars to get under way is threatening existing programs that have already proven beneficial.

Another concern she has is how partner notification will affect education and responsibility among those who should be concerned. "People need to understand what it is to protect their own health," she said, "instead of relying on investigators or government agents to come and tell them that they need to get tested."

Her task force has just compiled and released an incident reporting form, which is to be filled out by anyone who feels that they have been hurt somehow?domestic violence, loss of a job?as the result of a breach of confidentiality concerning their HIV status.

And while her task force has yet to hear of any such incidents?and for the record, in the 17 years the state has been keeping track of AIDS patients, there has not been a single reported leak?they want to be ready when things do start to crop up.

Others have pointed out even more fundamental problems with the way the law works. For instance, doctors don't usually attach a description of the patient's condition when they send a blood sample to the lab to be tested. Yet the law requires that doctors have to report anyone with a low CD4 (a kind of T-cell) count. So unless the doctor specifically states that the condition is not HIV-related, it's possible that people who have compromised immune systems for other reasons may suddenly find themselves on an HIV/AIDS list in a government databank.

And beyond that, there's no denying that the idea of the government collecting and storing names of a certain specific group of people does carry certain ugly connotations?whether they're HIV patients, or gun owners, or Jews and Gypsies.

While New York's law may be almost benign when compared with other states (according to one source, Texas has just begun a policy called Accelerated Intervention, in which the state may legally intervene?with counseling, court orders and, potentially, incarceration?in cases where they think that people who are HIV positive are having unsafe sex), a few people are trying to get the word out before it's too late.

"I still think this story's gonna explode," one man said. "I don't know when or where. It's such a pre-Nazi, pre-Holocaust kind of thing to be doing. There cannot be a happy ending to this. That I know."