The fourth in a series of town meetings on proposed changes to state law that would end the requirement for written consent for HIV testing and allow local health departments to monitor the treatment of people with AIDS showcased the continued opposition to those proposals.
“Our bodies, our lives, train the doctors, nix the spies,” chanted a group of roughly 30 protesters at the April 4 event as they marched out of an auditorium at the Fashion Institute of Technology in Chelsea. The chant started just as Dr. Thomas R. Frieden, the city’s health commissioner and the leading proponent of the changes, was about to make the final remarks at the two-hour event.
In an ironic twist, Spencer Cox, executive director of the Medius Institute for Gay Men’s Health, a panelist at the event, and a supporter of the proposals, had just referred to “Our Bodies, Ourselves,” a 1973 book on women’s health. Cox, a longtime AIDS activist, cited that book as part of the inspiration for the AIDS Coalition to Unleash Power (ACT UP) and the effort to empower people with the syndrome.
“Accurate information about our bodies is a right,” Cox said. “Right now, people aren’t getting that information.”
Clearly, some in the audience of roughly 200 agreed with the spirit of Cox’s remark, but they had a different view about how that should be done.
Frieden has argued that ending written consent for HIV testing and requiring documented oral consent instead will increase the amount of HIV testing in the city. He also wants to change state law to allow his department to use data that it already collects to assist in the treatment of people with HIV, the virus that causes AIDS.
Doctors and testing labs must report the results of viral load tests, which measure the amount of HIV in a person’s blood, and T cell count tests, which measure the state of a patient’s immune system. State law allows those results to be used only for contact tracing and epidemiological studies.
Frieden wants to use those results to determine if a person is being treated for HIV. Where those results indicate that a person is not in care, Frieden wants to be able to find that individual and offer to get them into care. The proposed changes would give his department access to a broad range of medical records that could be used to locate such patients. The health commissioner also wants to be able to give those records to a doctor when a patient begins care with that doctor.
“We do not have any citywide coordination and because of that when a person drops out of care, nobody knows,” he said. “What we are fundamentally saying is that the law has to be modernized.”
Where test results indicate a person is in care, the department will take no action even if the test results indicate they are doing badly. “We are not concerned with people who are in care,” he said.
Frieden has argued that the changes will reduce the number of AIDS deaths in the city as well as the number of people who are diagnosed with AIDS at roughly the same time they are first diagnosed as HIV positive. Typically, it takes eight to ten years to go from first becoming HIV-positive to developing the health conditions that define an AIDS diagnosis.
Opponents see the proposals as permitting highly-intrusive government monitoring of people with AIDS as well as health department intervention into the doctor-patient relationship.
“I get livid and I start to view my doctor as a potential informant,” said one HIV-positive man at the forum. “Will you guys seek more power and more invasive ability?”
Elisabeth Ryden Benjamin, director of the Reproductive Rights Project at the New York Civil Liberties Union, said that Frieden “is talking about an old fashioned public health monitoring and surveillance strategy” and she faulted him for not addressing the one in four New Yorkers who are uninsured and the 600,000 New Yorkers who are eligible for Medicaid, but not enrolled in that government-run health insurance program for the poor, and for not taking steps aimed at “improving sexuality education in the schools.”
Frieden contends that many doctors do not offer HIV testing because they dislike the written consent requirement. Opponents said that the solution is to train doctors.
“The reason why people are not getting tested is because doctors are not offering the test,” said Dr. Marcelo Venegas-Pizarro, the chief medical officer at Housing Works, an AIDS service organization. “Doctors are not asking about sexuality, doctors are not asking about drug use. Doctors are missing the point.”
Dr. Judith A. Aberg, a panelist and the director of HIV Services at Bellevue Hospital, said her hospital was already doing routine HIV testing throughout the facility with written consent.
The April 4 event featured a dynamic not seen at the previous town meetings. Cox, who is white, and Dennis deLeon, a panelist, a Frieden supporter, and the president of the Latino Commission on AIDS, are both HIV-positive, gay, and Chelsea residents. That neighborhood has the highest rate of new HIV diagnoses in the city, but a low death rate indicating that people with HIV in Chelsea are mostly in care. They are unlikely to feel the effects of Frieden’s proposals.
Consistently at the town meetings—which have also taken place in Brooklyn, the Bronx, and Harlem—the opponents have been African-American and Latino, the very population that Frieden says will be helped by the changes.
“Today in New York City, 12 people will be diagnosed with AIDS,” Frieden said at a March 29 town meeting at Medgar Evers College in Bedford Stuyvesant. “Ten of them will be African-American or Latino. Four of them will first find out they are HIV-positive when they already have AIDS.”
The March 29 event featured limited support for the proposals and vehement opposition. Dr. Monica M. Sweeney, a panelist and vice president of medical affairs at the Bedford Stuyvesant Family Health center, said, “I am in full support of changing the law to make HIV testing a routine part of medical care.”
Later during that event, one woman asked, “How much information do you need? Data, information is all that I hear, but I don’t see any prevention.”
Another audience member said, “I’m comfortable with my doctor. I don’t need anybody interfering with me and my doctor.”