A number of AIDS groups are opposing proposals by the city’s health commissioner that would end written consent for HIV testing and allow the health department to monitor the treatment of New Yorkers with AIDS and HIV.
“My concern with doing away with written consent—I just see it being abused by providers,” said Tokes M. Osubu, executive director of Gay Men of African Descent, a Harlem-based service group. “What he is proposing might just strip away people’s rights to privacy, rights to say no.”
The commissioner, Dr. Thomas R. Frieden, wants to change state law to allow healthcare providers to do HIV testing after a patient gives verbal consent. Frieden has argued that doctors avoid HIV testing because getting written consent is inconvenient. Ending written consent will result in HIV testing becoming routine in doctor’s offices, Frieden said.
Frieden 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 AIDS.
Currently, doctors and testing labs must report positive HIV tests and AIDS diagnoses to the department. They also must report the results of tests that measure the amount of HIV in a person’s blood, tests that measure the state of a patient’s immune system, and tests that show which anti-HIV drugs, if any, a virus has resistance to.
Frieden has argued that if those tests show that a patient is getting sick his department is barred from contacting that patient and the patient’s doctor to offer help. Some AIDS advocates say, in contrast, that state law allows the department to contact the patient.
Frieden has noted that African Americans with AIDS are more likely to die than other New Yorkers with the virus and he points to the 1,038 people who received an AIDS diagnosis in 2004 within 31 days of first being diagnosed as HIV-positive. Typically, it takes eight to 10 years to make that progression, so that figure suggests that many New Yorkers are living with the virus undetected for years. These late testers start treatment far sicker and their prognosis is often worse compared to those who start treatment earlier.
While AIDS groups agree that these are serious problems, they say Frieden’s proposals will not fix them.
“It is not the kind of magic bullet that the commissioner’s proposal might make it seem,” Ronald Johnson, associate executive director at the Gay Men’s Health Crisis (GMHC), said of the proposal to end written consent.
The 1,038 late testers, who are predominantly African-American men, probably do not have health insurance and private doctors so they would not be reached with routine HIV testing, Johnson said.
“Making HIV testing a more routine part of medical care would not address the needs of these people because they are not in medical care,” he said.
GMHC was among 15 to 20 AIDS groups that participated in a February 13 meeting on Frieden’s proposals that was hosted by the New York AIDS Coalition (NYAC). Attendees said responses ranged from groups having “major reservations” to others being “adamantly opposed.”
Because Frieden wants to change state law, his proposals will affect groups and people across the state. NYAC has roughly 200 member groups throughout New York. Joe Pressley, NYAC’s executive director, did not respond to calls seeking comment.
In studies, people who are asked why they did not get tested say they feared knowing the result, they did not think they were infected, or they had not done anything to get infected. Advocates say that ending written consent may ease the burden on doctors, but it does nothing to address the reasons why people avoid testing.
“People have fears about knowing their HIV status and then you add to that the prospect of government intrusion into your life that adds to those fears,” said Charles King, president of Housing Works, an AIDS service organization.
Advocates also do not trust Frieden. They believe he would like to see HIV testing become involuntary. That perception was heightened by a bulletin posted on the health department’s Web site and distributed to city providers the week of February 6.
The bulletin, titled “Making HIV Testing a Routine Part of Medical Care,” noted that the HIV testing rules were changed last year to end the requirement for verbal pre- and post-test counseling. It noted that patients “must give informed consent” but it did not say that written consent is still required. The bulletin only noted that “Patients who provide written consent are eligible to be tested under the new regulations.”
The bulletin provided three sample conversations that a doctor could have with a patient in which the doctor tells the patient he or she will test them for HIV and says only, “Do you have any questions?”
GMHC’s Johnson said, “It leads to some concerns that testing will become involuntary. The examples that the bulletin gives are examples of how testing could become involuntary.”
King said that the patients had not consented in those examples.
“It’s not even consent,” he said. “If you look at the examples, the doctor simply informs the person that he is going to perform an HIV test… and doesn’t ask, ‘Would you mind if I do this? Would you like me to do this?’”
While some AIDS groups said they might agree to a further shortening of the one-page written consent form, none supported the treatment monitoring proposal. Some objections concerned the impact on civil liberties.
“The individual interventions, the monitoring, people are adamantly opposed to this,” said Terri Smith-Caronia, director of New York City public policy at Housing Works, who attended the February 13 meeting. “This is like Big Brother, this is like the government intervening.”
Other objections concerned the resources that would be needed to monitor the roughly 95,000 New Yorkers with AIDS and HIV. That population is growing at about one to three percent every year.
“It’s astounding the kind of resources that might be needed for this that might well be spent in another way,” Johnson said. “What will be lost? Just on the basis of what he presents, it would require a bureaucracy of vast size—and the resources necessary to carry that out would be tremendous.”
In a February 6 interview with Gay City News, Frieden stated a willingness to take resources from other parts of his department to support the treatment monitoring effort.
Johnson also said the proposal would have the health department moving into the dealings between doctors and their patients.
“The level of individual monitoring that the commissioner is seeking goes beyond the public health goal and begins to interfere in the doctor-patient relationship,” he said.