New York City, home to the highest AIDS case rate in the country, may soon launch the most ambitious HIV-busting campaign in U.S. history. The plan, eyed by other cities and states, comes from the New York City Department of Health and Mental Hygiene (DOHMH), which seeks to strengthen prevention by making more people aware of their HIV status and securing care and counseling for them. But first, New York State must revise a law protecting those being tested and treated for HIV, a scenario raising civil rights concerns.
The department estimates that of the 100,000 people known to be living with HIV in NYC, 25% weren’t diagnosed until they developed an AIDS-defining condition. An additional 20,000 don’t even know they’re positive. “Early diagnosis can help reduce the risk of transmission,” says health commissioner Thomas R. Frieden, MD. “Someone who is positive and knows their status will, on average, reduce risky behavior.”
In making HIV testing routine, DOHMH hopes to amend the New York law that currently requires written informed consent. People presenting for medical care would need to provide only oral consent and would get little or no pretest counseling. DOHMH has also proposed granting department access to the medical records of those known to be positive to ensure that they’re getting care and services. Community groups fear that patients’ viral loads and CD4 counts—along with sexual histories and other recorded information—would be monitored. Health officials could then contact docs should officials feel a patient’s health is in danger—and possibly dangerous to others. (A high viral load can increase transmission risk.) “There is no meaningful limitation on how this information might be used to coerce an individual into ‘improving’ his or her health,” says Charles King, president of Housing Works in New York City.
Public health officials, care providers and activists all agree that New York testing and care initiatives have failed many at greatest risk for HIV, including young people and drug users. DOHMH says changing the law will cut city AIDS deaths by at least 500 annually. Opponents suggest less intrusive alternatives like widespread voluntary testing and peer education in neighborhoods lacking services.
Debate in the Albany statehouse should begin anytime now. As New York goes, so goes the nation?