March 29, 2006

The Frieden Files: A NY Debate on Privacy and Testing

Falling in line with the national trend toward loosening HIV confidentiality and consent for HIV testing, New York City Health Commissioner Thomas R. Frieden, MD, is petitioning the state to open up patient files to public officials, collect as-yet undefined “additional information” and stop requiring counseling and written consent before every HIV test. But judging from the reaction this week among the urban advocates likely to feel the proposed changes most, it will be a bumpy fall.  

“It’s a sledgehammer approach to fixing the problem of not [seeing] as many people being tested as there should be,” argues S.J. Avery, chief executive officer at Bronx AIDS Services. She is also concerned about the effects of such a law on “the confidentiality we have had with our clients over long periods of time.”

Terri Smith-Coronia, director of NYC Public Policy at Housing Works, the HIV advocacy group that leaked the draft proposals to the public last week, says simply, “The bill needs to come off the table.” Her organization worries that “additional information” could encompass “anything from further medical details to particulars of the person's sexual or drug-using history.” (Currently, New York state collects the names of those who test positive as well as the results of CD4 viral load and resistance tests and basic demographic and doctor information.)

Certain aspects of the city proposals enjoy key support, though. A statement from the Latino Commission on AIDS (LCOA) said the organization and Frieden “agree in concept that the Health Department [should] have access to currently collected health information and be able to use this information.” And LCOA president Dennis deLeon told POZ, “We’re in favor of the idea of routine testing, as long as the person can opt out. Written consent is a hindrance in about 20% of testing cases.”

Kim Nichols of the city’s African Services Committee, whose services include HIV testing, backs the idea of doing away with written consent because she doesn’t like doctors deciding who should be tested and who should not. “If you let people know that [HIV testing] would be a routine part of screening,” she says, ”then the physician’s role is [only] to let the patient know that they can opt out.”

Concerns about doctor-patient care have guided the city’s recommendations, says Dr. Scott Kellerman, the man in charge of HIV issues at the city’s Department of Health. For instance, he told POZ that he’s heard from plenty of doctors and health care workers who could use some help from the Health Department in tracking down people who drop out of the health care system—or are clearly getting bad care. “Doctors don’t have the staff to do this; they don’t have the resources,” he says.

As for community input on all this, Kellerman says the state legislature in Albany doesn’t get the city’s final proposal for a couple more months—and that meanwhile, his door is open. “We’re trying to get feedback from all sides,” he says.

Some proposals suggest compromise more than others. DeLeon, for instance, says a clearer and more careful process for gaining access to a patient’s medical files would address many of his worries. “We’d like to see some kind of step-by-step scenario where you exhaust [all possibilities] before you go knocking on someone’s door,” he says.

Avery, on the other hand, doesn't see much wiggle room on testing. “Sure, it would be great for physicians to offer it when people go in for routine checkups,” she says. “But don’t take away informed consent. Don’t take away counseling. Finding out that you have HIV is not like finding out that you’re diabetic.”