HIV Record-Keeping and the Specter of the "Medical Police State"

This is roughly how it works: Beginning just a few weeks ago, on June 1, the New York state Dept. of Health began gathering the names of everyone they knew who was infected with the HIV virus. Those people will be asked to divulge the names of all of their sex and needle partners. The people named will then be contacted and asked the same thing. And so on, all the names being collected and stored in a database in Albany. Similar programs currently exist in 42 states.

"Prior to these regulations," says Kristine Smith from the Dept. of Health's public information office, "we had no way of tracking how many individuals were infected with the HIV virus. We had to use our best educated guesswork to make decisions about where to offer prevention and treatment services. We had no solid, empirical data, because it was not tracked. The only thing that was traced were AIDS cases... But it's imperative that if you're infected with HIV that you learn about it as soon as possible and that you get into treatment quickly."

As might be expected, however, there's been quite a bit of resistance to the program among members of the gay and civil rights communities, many of whom see this as a dangerous step toward a "medical police state." Not only is it a blatant invasion of privacy, they say, but some states with similar programs have gone so far as to make refusing to reveal your partners' names a criminal offense. In Indiana, for example, refusing to disclose could result in a $1000 fine and/or up to 180 days in jail. In North Carolina, you could be imprisoned until you decide to give up the names. Other opponents of the plan have even speculated that this sort of legislation could soon lead to mandatory medical treatment?i.e., forcing those people who have been named to begin a regimen of protease inhibitors, whether they want to or not.

"We had heard these reservations expressed for a number of months," Ms. Smith told me. "There was an initial comment period, and then we revised the regulations based on those initial comments. We have done everything that we can to address the concerns... We have wanted to be sensitive, and I believe we have been."

Some people remain skeptical, however?including the Virginia-based International Coalition for Medical Justice and the ACLU. While the ACLU believes that voluntary notification of partners is a good and healthy and important thing, they don't care much for the way New York's law was been written. In a 1998 policy statement, they wrote:

"[New York's law] would make it a felony for an individual testing positive for HIV to fail to disclose the names of his or her sex and needle-sharing partners to the health department, or to provide information about such partners known to be false. Other proposed legislation in New York would require that the names of all individuals who test positive for HIV or are diagnosed with AIDS or an HIV-related illness be turned over to local health offices. The local health commissioner would then be required to notify the spouse and known sexual partners of the patient. The proposed legislation places no limits on the local health commissioner's power to investigate in order to identify and notify partners."

Ms. Smith vehemently denies that New York's law, as enacted last March, is coercive in any way?emphasizing that there would be no criminal charges filed if you refused to answer.

"One does not have to give the names of one's partners," she told me. "It's absolutely voluntary on the part of the patient. There will be no coercion. The patient will be counseled as to the reason why it's important that the partners are notified. If there's a possibility that they're infected, they need to know, they need to get tested, and if they're infected, they need to get into treatment. But there's absolutely no coercion..."

Michael Adams, from the ACLU's AIDS Project, still has his doubts. "We always have been, and we remain, opposed to this type of partner-notification program," he says. "We think it's misguided. It's not a good idea from either a public health perspective or from a civil liberties perspective."

And while he admits that the position paper quoted above does not reflect the subsequent changes made to the law, he says the existing law isn't much better.

"I think there's a big difference between saying that no criminal charges will be filed and saying it's not coercive. Those aren't the same thing. The fact is, doctors and public health authorities are required to notify any sexual or needle contact the person with HIV has with or without the person's consent. And people are told that they are required to provide the names of their contacts. It's true that they won't be sent to prison if they don't, but imposing that requirement on people is coercive. It's not an option, it's mandatory."

Bob Beard, a lawyer with the ICMJ, agrees. "One of the issues that I think is interesting about the New York law is that the treating physician becomes the agent of the health department. The physician is mandated to request this information from the patient?and then to turn it over to the health department... If I were a physician, I'd be uncomfortable with that."

Beard also said that the physicians are specifically instructed not to tell the patient that there's no penalty for failure to comply. "So it's 'voluntary,' but again?when you've just found out that you're HIV-positive, I don't know how 'voluntary' anything that you're doing at that point is. I think you're hitting people at a pretty vulnerable time."

In order to help slow the further spread of the disease?and more effectively help those already infected, Ms. Smith told me?it's necessary to collect names.

"Some of the states which were in fact reporting HIV cases without the name indicators have changed that, because it's simply too difficult to keep track of the patients. You can't track the numbers adequately when you're using something other than the name indicators."

Furthermore, Ms. Smith added, the Health Dept. has been collecting the names of AIDS patients for more than 20 years, and none of those names have ever been released.

"We will comply with every legal requirement, and go over and above that to be sensitive to the issue of confidentiality, and to make all those who are concerned about that feel comfortable that we take it as seriously as they do."

Talk like that disturbs Mr. Beard.

"Since the time of the Nazis, political policy and health policy have often walked hand in glove. The first ghettos in Germany were set up for health purposes. Could it happen here? Could we have concentration camps for people who are HIV-positive? I think so. And partner notification? Maybe people who are HIV-positive should get the NRA on their side. Gun registration just means that the government can find all the guns when they're ready to take us over, and partner notification means that they can come and find all the HIV-positive people when they're ready to set up the camps."

That may sound a little paranoid to some, but who knows? Ms. Smith flatly denies that there are any plans to force people into treatment, yet in Pennsylvania, there's a law on the books that allows the government to quarantine anyone who's HIV-positive and who refuses to take medication. While the law has, to Beard's knowledge, never been enforced, it's still on the books.

"This regulation is intended to help people to live healthier lives," Ms. Smith countered. "We would never do anything that would, in any way, put someone at risk of not getting the treatment they need or, in any way, make it more difficult to live with this already very difficult disease..."

Even though Mr. Beard has doubts about what such programs are actually accomplishing?which is not much, he argues, especially given the percentage of people contacted through partner-notification programs nationwide whose HIV tests are coming back negative?the prospects still bother him.

"I've worked for governments for too long to believe that the government is actually out there doing this to help the citizens," he told me. "The gay population, the black population and the Hispanic population have a lot to be concerned about with this, and I don't think they're aware of it."