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Concern for AIDS proposal

NYC health commissioner's plan to eliminate consent for HIV testing and to open patients' files to officials raises red flag for advocates

BY KATIE THOMAS | Newsday Staff Writer

April 10, 2006

A proposal by New York City's health commissioner to streamline HIV testing and allow officials access to patients' medical files is raising alarm among AIDS advocates who say the changes would infringe on patients' privacy.

In a pitch that Commissioner Thomas Frieden has been making to community groups and Albany lawmakers for months, Frieden argues for doing away with the statewide requirement for written consent before getting an HIV test as well as counseling for those who test negative for the virus. Frieden's proposal - which has not yet been introduced in the state Assembly or the Senate - would also allow local health officials to track the condition of people with HIV or AIDS.

Embedded within the legalistic language of Frieden's proposal is a profound yet explosive message: AIDS has come of age. More than two decades after its discovery, Frieden argues, it is time to start treating it like any other infectious disease.

"Given the availability of drugs that can effectively treat HIV infection and progress on anti-discrimination initiatives, perhaps society is ready to adopt traditional disease-control principles and proven interventions," Frieden wrote in the December issue of the New England Journal of Medicine.

But even as some advocates applaud Frieden for taking up the issue, they warn that the day when AIDS can be compared to diseases like tuberculosis has not arrived.

"We are so not there yet," said Greg Noone, program manager for Thursday's Child, a Patchogue-based AIDS organization. "Try going out on the street and see how people will shy away from you. Parents will disown you. This is the day-to-day routine for people living with HIV and AIDS."

Doctors who support parts of Frieden's plan have concerns about some of his ideas, especially the proposal that health officials could examine patients' files. "I wouldn't want to interfere with the provider-patient relationship," said Dr. Joseph McGowan, medical director of the Center for AIDS Research and Treatment at North Shore University Hospital in Manhasset. "That's critical in the success of HIV."

Frieden's proposal is gaining traction in Albany. "He makes a very good case," said state Sen. Kemp Hannon (R-Garden City), chairman of the Senate's health committee.

The health commissioner has the support of Assemb. Nettie Mayersohn (D-Flushing), who in 1999 backed a successful but controversial effort to require people with HIV to be listed by name on a confidential state registry. "This is nonsense," Mayersohn said of opposition to Frieden's proposal. "We're dealing with a deadly, communicable disease and they're talking about doctor-patient relationships."

Testing for HIV should be as routine as screening for other conditions, such as high cholesterol, diabetes and breast cancer, Frieden said. "We do need to make HIV testing more of a routine part of medical care."

Some of Frieden's views are echoed in a draft report released last month by the federal Centers for Disease Control, which recommends against written consent and for making HIV testing routine for everyone between ages 13 and 64.

Dr. Janice Verley, director of HIV services for the Nassau University Medical Center in East Meadow, said Frieden's ideas underscore how much the disease has changed. Today, she said, effective drugs mean "some of the regimens are quite simple. I think that's motivation for people to find out. It can improve their health and it may affect transmission of infection."

But AIDS advocates and some doctors say that eliminating counseling for patients who test negative would be missing an opportunity for a "teachable moment" - a time when people involved in risky behavior are receptive to advice about how to stay negative.

"We don't want someone skipping out saying, 'I took all sorts of drugs and I'm negative,' or 'I can continue to do what I was doing.' It's really an opportunity to do some prevention work," said Jeffrey Reynolds, vice president for public affairs for the Long Island Association for AIDS Care. New tests can generate results in about 20 minutes, and the entire process now takes a half hour, he said.

Frieden said his proposal would not eliminate counseling, just disconnect it from testing. Counseling, he said, "ends up being a barrier to testing."

Frieden is also proposing that lawmakers give local health officials the power to examine patients' medical data. If a patient has stopped getting treatment, for example, officials could call his or her doctor - or the patient. Because of privacy concerns, officials can now only collect information on a group level.

Some worry that patients - particularly drug users or immigrants who are in the country illegally - will shy away from care if they know a government employee is allowed to contact them. "The question comes down to how do you reach this population who's reluctant to speak to government in the first place," said Assemb. Peter Rivera (D-Bronx).

Dr. David Ackman, Nassau County's health commissioner, praised Frieden's proposal but questioned whether health departments had the resources to track individual patients. About 2,300 people in Nassau are living with HIV, Ackman said. "If we were required to track and monitor the treatment of all those people, it would be difficult."

Frieden said technology could separate out the neediest patients such as ones with high T-cell counts and a high amount of the HIV virus in their blood, allowing workers to focus on a smaller group. And he noted that health officials already contact patients with HIV and AIDS to ask about their sex and needle-sharing partners.

The status quo, Frieden argues, isn't working. "Twenty-five years into the epidemic, progress is stalled," he wrote in the journal article.