Laws about HIV testing have created decades-long controversy in New York State, pitting health officials who want virtually universal HIV testing against advocates — especially those who remember a darker, more discriminatory time — concerned about the privacy and protection of patients. It was that concern, after all, that in 1988 led to a stringent law requiring that health providers obtain from patients signed consent for HIV testing separate from consent for all other routine tests. And it was that same concern that, in the mid-2000s, led to mighty pushback from advocates when then-NYC health commissioner Tom Frieden tried to downgrade the law from written consent to mere oral consent, with the provider noting as much in their chart. That change did not occur until 2014.
But now, more than a decade later, there is solid evidence not only that early HIV detection and treatment means better long-term health outcomes, but that steady treatment makes people unable to spread the virus. It appears that most of the HIV advocacy community in New York City and the state at large now agree that the current law still obstructs testing for health providers — largely because they find it awkward asking patients if they can test for HIV.
These advocates agree that levels of testing high enough to truly end the state’s HIV epidemic cannot be achieved unless everyone who walks into an emergency room or primary care setting is routinely tested, with no notice to patients except for a sign on the waiting-room wall telling them they can opt out if they speak up and say so. And they are ready to lobby for that change with the state legislature in Albany next year.
On October 31, at the Brooklyn offices of Housing Works, representatives from that agency, Montefiore Medical Center, the large LGBTQ health provider Callen-Lorde, Bronx and Brooklyn Legal Services, the Latino Commission on AIDS, the National Black Leadership Commission on AIDS, Harlem United, the LGBT Center, Boom!Health, and other organizations met. According to Housing Works cofounder Charles King, “I think we came to a working consensus that we want to move HIV testing forward in a routine way.”
King said that the next step would be another meeting in which constituents write a rough draft of proposed bill language that would mandate that health facilities do routine HIV testing and that they post that information clearly in waiting or other public areas, letting patients know they must explicitly refuse HIV testing in order to not be tested.
More than a decade ago, Housing Works was among the leading voices against such a move, engaging in a sustained public protest against Frieden’s efforts that created acrimony between the city health department and much of the city’s HIV/AIDS services community. Thirteen years later, says King, “Less than 10% of all HIV-positive people in New York State don’t know their status,” and many of them are those whose only point of contact with health care is a visit to the emergency room — hence the need to test everyone in those settings.
“It’s imperative that we identify these folks and get them into care if we’re going to not only save their lives but stop all new infections of HIV in New York State,” says King.
He is part of the state’s Ending the Epidemic initiative, which aims to get new HIV infections in New York to 750 or below by 2020, as well as to make sure that the vast majority of all New Yorkers with HIV are both in regular care and virally suppressed on treatment. These are all necessary factors to effectively end the AIDS epidemic in New York State, historically the nation’s worst.
“In recent years, we’ve learned that the sooner someone with HIV starts on treatment, the better their outcomes,” King says. “We’ve also learned that someone who’s virally suppressed can’t pass on HIV. Those are huge game-changers that have tipped the balance in terms of whether it’s worth intruding on someone’s privacy.”
Donna Futterman, M.D., longtime director of the Adolescent AIDS Program at Montefiore, agrees. She’s long called for getting rid of requiring explicit consent from patients to HIV-test them. “The current stipulations are a proven barrier to more people knowing their status,” she says. “We want it to be part of a routine blood panel. Why do we still need HIV exceptionalism when it comes to testing? No one says, ‘Oh, we’re screening you for cancer,’ but often, routine tests are how you start to find cancer.”
She continues: “With HIV right now, a lot of nurses use unverbalized judgment on who they ask to be tested, based on race, age, or who they think is gay. They shouldn’t have to make that call. Thirty-five years into this epidemic, it’s time for us to let go of some of our old notions, especially now that we have the blueprint to ending this epidemic, and testing is the first piece of that.”
