Rifts Emerge on Push to End Written Consent for H.I.V. Tests

The New York Times
December 25, 2006



A yearlong effort by New York City’s health commissioner to do away with a state requirement that patients give their written consent before being tested for H.I.V. has created a sharp rift among doctors and advocates for people with H.I.V. and AIDS.

More than 1,400 people in the city died from AIDS-related illnesses last year. Of the more than 100,000 New Yorkers who are infected with H.I.V., the virus that causes AIDS, perhaps one-fifth do not know it, according to city estimates. About one-fourth of H.I.V. diagnoses are made when the patient already has AIDS, by which time the infection has gone undetected for a decade, on average.

Alarmed by those facts, the health commissioner, Dr. Thomas R. Frieden, co-wrote an article in The New England Journal of Medicine a year ago calling for governments to be much more aggressive in monitoring and caring for people with H.I.V., and to treat the virus more like other infectious diseases.

After months of exchanges between the city and the advocates, Dr. Frieden’s ideas were the subject of a State Assembly hearing in Manhattan on Wednesday, the first time they had been formally aired before state lawmakers. The Pataki administration has not supported the proposal, and it is not clear whether Governor-elect Eliot Spitzer will back it.

Dr. Frieden wants to change a 1988 state law that set up stringent rules protecting the privacy and confidentiality of patients tested for H.I.V. Those rules require doctors to get a signed consent form — separate from the general consent form used for an array of other tests — before giving an H.I.V. test. Dr. Frieden wants to give doctors the option of obtaining oral consent; they would be required to document it in the patient’s chart.

The law also now requires that before being tested for H.I.V., patients must be counseled extensively about the nature of AIDS, the risk of discrimination and the behaviors associated with transmitting the virus. Under Dr. Frieden’s proposal, pretest counseling would be simplified and post-test counseling would be strengthened.

An activist commissioner, Dr. Frieden has campaigned successfully for routine depression and diabetes screening and for restrictions on smoking and trans fats. Now he is seeking to remove what he regards as obstacles to voluntary H.I.V. testing, making it as prevalent as possible, short of mandating it. But the hearing revealed a striking lack of consensus, particularly on the issue of written consent.

State Senator Thomas K. Duane of Manhattan, who is H.I.V.-positive, called Dr. Frieden’s proposal “well intentioned but grossly misguided.” He said it failed to address a bigger problem: “doctors’ discomfort with addressing H.I.V./AIDS.”

Several lawyers testified that a written consent was the best way to demonstrate a patient’s wishes.

“Without a signed informed-consent form, there is no way for practitioners in busy health care settings to prove that a patient’s consent to H.I.V. testing was acquired,” said Elisabeth Ryden Benjamin, a lawyer at the New York Civil Liberties Union.

Another lawyer, Janlori Goldman of the Center on Medicine as a Profession at Columbia University, said that compared with oral consent, “The physical act of signing a document leaves less room for ambiguity and inference.”

Dr. Marcelo F. Venegas-Pizarro, chief medical officer at Housing Works, an AIDS advocacy group that has been fiercely critical of Dr. Frieden’s proposal, said doctors — who may have just 15 minutes with a patient — should be required to take the time to explain the test. “Pretest counseling and informed consent have forced me to take the time to ensure that the patient understands what is being done,” he said.

In an interview yesterday, Dr. Frieden expressed impatience with the critics. “Frankly, there are a lot of misconceptions about what’s being proposed, and, frankly, there are some who term themselves AIDS advocates who are very comfortable with the current situation,” he said. “And the current situation is completely unacceptable. New York is an epicenter of this epidemic, and we’re very far from being an epicenter of care and control.”

Over the summer, the City Department of Health and Mental Hygiene surveyed 137 primary-care doctors in the South Bronx, Central Brooklyn and East and Central Harlem. It found that 38 percent answered yes when asked, “If written consent were no longer required, would you offer more patients an H.I.V. test?”

Dr. Frieden said, “I think we have to divide the world as we would like it to be from the world as it is.” If a written consent form is a demonstrated barrier to more routine testing, it should be abandoned, he said.

The Greater New York Hospital Association testified in support of Dr. Frieden’s proposal, as did several doctors. “Counseling and paperwork are barriers,” said Dr. Rona M. Vail, who works at the Callen-Lorde Community Health Center in Chelsea but said she was describing only her own views. “Paperwork means paper — paper that needs to be found, filled out and signed.”

Dr. Amar V. Munsiff of North General Hospital in East Harlem said the written consent rule made H.I.V. seem exceptional. “The fact that a specific blood test must be separately consented to raises concerns in patients who are already suspicious of the medical system, so much so that they do not access it except during emergencies,” he said.

It is unclear what will come of Dr. Frieden’s proposal, which is largely contained in a bill sponsored by Assemblyman Darryl C. Towns of Brooklyn.

On the one hand, Dr. Frieden’s ideas are in line with national practices. Thirty-eight states do not require patients to sign separate consent forms for H.I.V. testing. Last year, the State Health Department streamlined the consent form. In September, the federal Centers for Disease Control and Prevention recommended that H.I.V. testing be a routine part of medical care for patients ages 13 to 64 and said that written consent and pretest counseling should not be required.

However, state lawmakers have shown resistance to amending the 1988 law. “I remain convinced that written consent is extremely important,” said Assemblyman Richard N. Gottfried, the chairman of the Assembly Health Committee, which held the hearing. “There may well be ways we can further simplify the counseling process.”

Dr. Frieden has already retreated from a provision that would have allowed local health officials to gather and share certain patient information that could have been used to identify people with AIDS who had stopped getting care or were not responding to treatment.


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