NYC Widens Web of AIDS Surveillance

Health officials propose greater data collection and sharing

Among a number of proposals that could be controversial, New York City’s health department wants to collect more information on people with HIV and to change state regulations to allow it to more widely use and share that information with doctors and other health departments, according to a prevention plan it filed with the federal Centers for Disease Control and Prevention (CDC).

“The concern is that they are trying to expand how they will use surveillance data,” said Kristin Goodwin, director of New York City policy and organizing at Housing Works, an AIDS group. “The concern is that somehow people’s data would be released for other purposes.”

As part of a CDC-funded project, the 12 jurisdictions with the highest AIDS prevalence developed three-year HIV prevention plans. Those plans were posted on the CDC’s web site on November 16.

The 68-page document produced by New York City’s Department of Health and Mental Hygiene (DOHMH) contains some proposals that AIDS groups support, but others are raising concerns. Several of the changes the DOHMH wants would require new state regulations or alterations to existing ones.

When an individual is in the DOHMH’s HIV registry but is not in another jurisdiction’s registry, New York officials can only share the names of the HIV-positive person’s sex partners from that jurisdiction –– not the name of the HIV-positive person himself. The DOHMH wants to be able to share all of its data on such an HIV-positive individual with another jurisdiction should that person move there.

With 34 states currently criminalizing exposing others to HIV or having sex with someone without disclosing one’s positive HIV status, the concern is that New York City’s health department could supply evidence that might contribute to a criminal prosecution.

The DOHMH also wants to share all of its case information on any person with HIV in its registry with any other jurisdiction that also has that individual’s name in its HIV registry.

The DOHMH has a database of the sex partners of HIV-positive people that it uses to perform partner notification services and for epidemiology studies. State regulations require that the partner’s names be deleted one year after any investigation is closed. The department wants to retain those names indefinitely. Failing that, the agency wants to keep the names for ten years.

The sex partner database appears to provide health officials with data helpful in tracking specific individuals. The DOHMH received information on 1,996 partners between September 1, 2006 and September 30, 2007, according to a study the department released in August. Of those, 1,270, or 64 percent, had sufficient identifying information –– first and last name and age or date of birth –– that the department could compare those names to its HIV registry and determine that 386 were already in the registry.

The DOHMH wants to be able to contact the doctor of any person who constitutes “an ongoing public health risk as a result of their being named repeatedly over time by different persons interviewed” by the agency’s Field Services Unit.

The department also wants access to Medicaid pharmacy billing records. That data would show which anti-HIV drugs Medicaid beneficiaries are taking. The DOHMH already receives viral load test results, which show how much HIV is in a person’s blood; T-Cell counts, which indicate the state of a person’s immune system; and drug resistance tests, which document which anti-HIV drugs a an individual’s virus has resistance to, so it could monitor how HIV-positive Medicaid beneficiaries are doing on a particular drug regimen.

In 2006, Thomas Frieden, who was then the city’s health commissioner –– and is now director of the CDC –– made a similar proposal, but he wanted the DOHMH to be able to contact an individual’s doctor if the viral load, T-Cell counts, and drug resistance information showed a person with HIV was doing poorly. That proposal was angrily resisted by some AIDS groups and their clients, and it did not result in any new policy.

The plan posted on November 16 also revealed that the DOHMH will meet with the city’s police department to try and gain support for a state bill that would bar using condoms as evidence in prostitution cases. AIDS groups support that legislation.

Other elements of the DOHMH and police interaction are less clearly beneficial. In addition to the condom legislation, the DOHMH wants to discuss “cross-cutting issues of policing and public health” with the NYPD, and the health department wants to present data, including “high risk behavioral surveillance data,” at police roll calls. The DOHMH is barred by state law from disclosing the names of people with HIV, but it could discuss locations where high risk behavior is taking place.

Responding to questions that were emailed on November 17, the DOHMH, on November 21, wrote, “Unfortunately, we will not have responses to your questions ready by the end of the day today. We are working on them and will have them to you as soon as possible.”

Housing Works’ Goodwin said keeping the sex partner data was troubling.

“I have issues with them feeling like it’s okay to track specific partners,” she said. “It’s this whole thing that specific individuals are more of a problem because of their risk behavior… It’s this very Big Brother feel to it.”

If the discussions with police concern only ending the practice of using condoms as evidence of prostitution then AIDS groups would approve, but broader conversations could be a problem.

“Hopefully, the education work is intended to discourage using condoms as evidence for sex work (which we hear sporadic reports of) and making improper arrests for syringe possession, and not sharing info about sex or drugs locations,” Sean Barry, a director at VOCAL-NY, a group that does political organizing among HIV-positive people as well as among drugs users and those formerly incarcerated, wrote in an email.

For Sean Strub, a longtime gay activist, the DOHMH proposals were part of a trend of health departments across the country collecting more and more information on people with HIV.

“This is all part of a disturbing trend towards an increasingly policing-oriented public health system that is about regulating and controlling rather than empowering people and preventing disease,” he wrote in an email. “People with HIV are being tested, tagged, and tracked; with ever-growing files on their private activities that can be used against them in criminal prosecutions.”

As Gay City News went to press, the HIV Law Project and the Gay Men’s Health Crisis (GMHC) said they were still studying the plan. The Center for HIV Law & Policy, the Latino Commission on AIDS, and Gay Men of African Descent (GMAD) did not respond to calls and emails seeking comment.