Ophelia Barrios, a staff member of the Harlem Directors Group, a consortium of AIDS services groups in Upper Manhattan and one of the panelists at the March 27 event, opened the discussion by saying, “We would like to ask the commissioner how the department will ensure that individual rights will not be sacrificed,” and then specifically said her group is concerned that the legislation could lead to positive sero-status being “criminalized.”
Another panelist at the Harlem Hospital gathering, Martin Orduna, coordinator of the East Harlem HIV/AIDS Network, focused his comments on Frieden’s goal of allowing the health department to contact HIV-positive people not connected to healthcare, citing the plight of “people living in dangerous situations whose lives would be made more dangerous by the presence of a public health official at their door”—specifically the risks posed to undocumented immigrants, those living under fear of domestic violence, and tenants who could face eviction. Frank Oldham Jr., a panelist who runs the National Association of People Living With AIDS, took particular issue with language that he said reduced the longstanding state requirement for “informed consent” by those being tested for HIV to patients merely being “advised” by their doctors that such a test would be administered. Oldham criticized that as an unacceptable “change” in policy, in a view echoed by several others in audience who spoke up later.
In response to the panelists’ comments, Frieden made several major points—emphasizing that nothing in his proposal involved mandatory testing or treatment, that no outreach would be done to people who had indicated that they wished not to be contacted, and that no information would be shared with federal immigration officials. Most significantly, he stated that beyond eliminating the requirement that informed consent be given in writing, his department was proposing no further scale-back in that policy.
Recalling feedback he received at a March 22 public meeting in the Bronx, the health commissioner said, “It appeared from some of the wording that informed constant was supposed to mean just that you were told that you were being tested. That is not the intent of the law. If you read the law carefully, it says that there will be documentation that oral informed consent has occurred. That may be an area where we need to look at the wording and see that it is said more clearly.”
Despite that statement, several audience members who followed repeated Oldham’s original concern, one terming Frieden’s notion of informed consent “a wink and a nod.” And Tokes Osubu, executive director of Gay Men of African Descent, a Harlem-based group that does HIV prevention work, moved beyond the narrow definition of informed consent to challenge more fundamentally the philosophy of Frieden’s proposed changes. The commissioner repeatedly referred to how HIV testing is performed differently than any other medical procedure and that making it more routine—primarily through ending written consent—is required to ensure that doctors will offer the service more frequently.
Osubu argued that his group’s success at connecting its clients to post-testing treatment—the other major goal Frieden has—is based on the effort it puts into pre-test counseling. Recent changes to state law have reduced the requirement for such pre-counseling to simply handing a patient a printed brochure. Osubu, saying that “education is just so inadequate” and care in city hospitals “woefully disgraceful,” argued that doctors will never do their job right if they make HIV testing routine. Another audience member complained that oral consent will add to the already dwindling amount of time patients have to spend with their doctors.
Tim Murphy of Housing Works, an AIDS service and advocacy group, faulted Frieden’s legislation for allowing the city what he said was an open-ended mandate to seek “additional information concerning” those living with HIV from other city and state agencies serving such individuals. Terming the legislation “intrusive,” Charles King, Housing Works’ president, said the city would do more for the quality of life of those with HIV if it immediately gave them access to care through the HIV/AIDS Services Administration (HASA), rather than limiting such benefits to people after they progress to AIDS and are sicker. King said lack of stable housing is the key correlative of people becoming disconnected from care.
The New York AIDS Coalition (NYAC) voiced a similarly harsh view of Frieden’s legislation. Kacie Winsor, a NYAC staffer, challenged the health commissioner, whom she termed a “data-driven” official, to provide evidence that written consent is the key barrier to HIV testing.
Winsor also said that, given the number of undocumented immigrants living with HIV, it is “unacceptable” that the health department held a forum in a hospital that requires a photo ID for entry.