Albany Gets Testy
GMHC Associate Director of Testing Lynnette Ford explains why written consent is essential for HIV testing
Despite the mayhem in the State Senate’s this week, on Wednesday the Assembly held a spirited hearing regarding potential changes to New York State’s HIV testing and counseling legislation. Sponsored by Assemblymember Darryl Towns and the Black, Puerto Rican and Hispanic Caucus, the hearing at times felt like as much like a family squabble as a debate by longtime colleagues—the rhetoric was polite but heated, with discussions of race playing a large part in the discussion.
Important differences emerged over written informed consent and pre- and-post test counseling, with advocates on both sides of the policy divide claiming their positions would benefit blacks and Latinos, who remain disproportionately impacted by the AIDS epidemic.
New York’s Article 27-f requires doctors to supply a one-page form to patients to obtain their consent for an HIV test, and requires doctors to provide patients with pre- and post-test counseling. “The current law is deterring people of color from testing until they have an AIDS-defining illness,” Latino Commission on AIDS Executive Director Dennis deLeon said in his testimony. “This is a racist system.”
Most of the people testifying challenged deLeon’s claims that such requirements were barriers to testing.
“Why is it that we have so many more black men and women getting infected? It has nothing to do with this law,” Tokes Osubu, executive director of Gay Men of African Descent, said in his testimony. “When we offer a test, people take it.”
In a follow-up interview with the Update, Osubu said, “We’re playing the race card here and that’s disgusting.”
And many others challenged the claim that civil liberties no longer played a role in testing. “In the ’80s, when the face of the epidemic was gay white men, we put protections for civil liberties in place. I’m offended that we would want to lose these because this is now a disease of color and poverty,” said Housing Works Director of New York State Advocacy and Organizing terri smith-caronia.
Smith-caronia also took issue with calls to eliminate pre- and post-test counseling. “We’re not talking about a psychotherapy session. It’s a chat.”
Four on the floor?
There are currently four separate testing bills floating around the Legislature that would amend Article 27-f. All of the bills change the law to require the universal offering of HIV tests in doctors’ offices, emergency rooms and elsewhere and contain nuanced differences regarding how the tests are offered.
Latino Commission on AIDS, Harlem United and NBLCA support legislation sponsored by Towns and Sen. Hiram Monsserate (who is currently occupied attempting to take over the Senate) as well as legislation sponsored by Annette Robinson and Shirley Huntley. Both bills would remove written informed consent; the Towns/Monserrate legislation requires HIV tesing in doctors’ offices while the Robinson/Huntley bill only require testing in hospitals and emergency rooms.
Those three community groups strongly oppose a bill sponsored by Sen. Tom Duane and Assembly member Richard Gottfried that maintains written consent but uses an “opt-out” procedure instead of an opt-in procedure (simply put, opt-in means you specifically request the test and opt-out means you specifically ask not to have the test) .
None of the advocates support a bill sponsored by Assemblymember Nettie Mayersohn, which would eliminate written consent and pre- and post-test counseling.
“The Duane/Gottfried bill doesn’t move the fight far enough,” said Harlem United Director of Government Relations Soraya Elcock. The passionate Elcock said in her testimony that history will remember President Barack Obama’s election and the changes to HIV testing laws as the two most important events of 2009.
The Duane/Gottfried legislation is supported by the Legal Action Center, Gay Men’s Health Crisis and the New York Civil Liberties Union, because these groups view written informed consent as an important civil liberty that needs to be protected, and that oral consent is not adequate.
Housing Works doesn’t support any of the proposed legislation, because none of the laws require patients to opt in to testing, the only way to ensure that the process is truly consensual. See Housing Works principles on HIV testing.
What about pharma?
Although the tone of the hearing was largely a fight between often-allies, there was a question as to whether pharmaceutical companies have a hand in this fight. Pharma believes that written consent is a barrier to getting people diagnosed and into treatment.
“When you have pharma coming in and saying the law should be changed, this has nothing to do with what goes on in the doctor’s office,” Osubu said in his testimony.
Although Osubu did not discuss which pharmaceutical companies he was referring to, some advocates wonder if Gilead has put money into the testing fight. Gilead Pharmaceuticals funds Harlem United and a member of Gilead serves on the Harlem United board. Gilead and Harlem United share an Albany lobbyist.
Soraya Elcock of Harlem United emphatically denied any collaboration over 27-f: “Harlem United does not get any money from Gilead or any other pharmaceutical company to move this position. Written consent is a problem we have been working to address for years.”
What’s next?
Because the State Senate remains in flux, it is highly unlikely that any bill will be passed this legislative session, which ends in two weeks. There is still time to attempt to develop community consensus.
“We know there are still some tweaks we can make to it,” Towns told the Update after the hearing. “We are not as far away as it seems.”
In addition to Towns, Assemblymembers Robinson, Barbara Clark and Inez Barron attended the hearing, where more than a dozen AIDS advocates provided testimony.
“I don’t think we’ve ever had a hearing with as many people of color in the room,” Clark said. “No matter what side you’re on, I appreciate that we’re beginning to see the real importance of this issue to our community.”
Posted on June 12, 2009 at 1:57 am
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