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."
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Prior to the October 31 meeting, concerns -- if not exactly objections -- about the proposed change were expressed by staffers at the Legal Action Center, a longtime HIV legal rights group. "We've represented many people over the last 25 years who've had their HIV confidentiality violated," says Sally Friedman, the group's legal director. This includes about 12,000 people who received shares of a $17 million settlement from Aetna this year after the insurer revealed their HIV status via letters sent with clear-window envelopes.
"We're concerned about people being tested without their knowledge," said Friedman at that time. But after the October 31 meeting, she said she supported going forward with the changes if they included "clear and conspicuous signs, in multiple languages, in waiting and other areas, in addition to other mechanisms for universal notification." That, she says, might include a subway or bus poster campaign. The law also had to include "more education of health care providers so that they routinely offer HIV testing."
King says that a poster campaign was discussed at the meeting, and that, if made law, how to implement the new policy would likely be fleshed out as guidance from the AIDS Institute, the state's main HIV/AIDS policy agency, and disseminated throughout health settings statewide.
The advocates are hoping that longtime New York State Assembly Health Committee chair Richard Gottfried would introduce the legislation. A staffer in his office sent a quote from him: "We're working with HIV/AIDS advocates and care providers to ensure that testing policies are up to date in order to enact out Ending the Epidemic strategy. An impressive number of organizations have signed on to the idea of eliminating oral notification requirements, as prevention and treatment options have advanced over time. We will be continuing discussions with the community in the coming weeks in order to introduce legislation that reflects best practices around prevention and privacy.”
However, some advocates are still opposed to the changes, including Catherine Hanssens, executive director and founder of the Center for HIV Law and Policy.
"There are so many things wrong with this, it's hard to know where to start," she says. Of the law-change supporters, she says, "They're so focused on getting people tested whether they know it or not as a way of meeting their ETE [Ending the Epidemic] goals, but there's nothing here about reducing racial disparities regarding engagement in HIV care. We have an ongoing problem where physicians don't like to talk about sex with their patients. Many of them don't believe that the person standing in front of them, particularly if they are a racial minority, has the ability to understand and make informed decisions. This law will take us further backward to a way of providing care that erodes trust."
However, Hanssens says she's not sure if she is going to try to lead a charge against the proposed change.
Indeed, some advocates seem to feel more a sense of inevitability around the proposed change than enthusiasm. "I would not say that everyone agreed that it was a good idea at the last meeting, but more that it felt like it was going to happen and we need to make it as supportive of people being tested as possible," says Cathy Bowman of Brooklyn Legal Services. "Has New York reached the point when it is safe and appropriate to test everyone for HIV without them necessarily being aware that they are being tested? I don't know the answer, but I'm not sure that we are."
She continues: "Lawyers providing direct legal services to PLWHA [people living with HIV/AIDS] see the worst that can happen to people in terms of discrimination, impact on functioning, criminal law consequences, etc., so we are coming from that perspective."
And Jeff Birnbaum, M.D., M.P.H., who runs the adolescent HIV clinic at SUNY Downstate Medical Center in Brooklyn, says that he is not so much opposed to the proposed change as skeptical that it would do much good.
"People who need to be tested need to be engaged first," he says. "The larger issue is that providers aren't having meaningful conversations with their patients. So even if you find people who are HIV positive, you have to engage them in care, and we don't have systems for that, or the system breaks down. If someone tests positive for HIV in an ER on the weekend, is someone going to start them on medication and ensure linkage to care? The idea that this is going to make a difference is an illusion." He adds, however, that he hopes to be proven wrong.
To Hanssens' charge, King says, "There are many tests that we already do without explicitly telling people. Many patients already assume that HIV testing is part of their care, and that if they're not HIV positive, it's because their doctor hasn't told them that they are."
And to Birnbaum, King says that linkage to care after HIV diagnosis is already the norm in New York State, pointing to a 2017 New York State AIDS Institute report finding that 73% of newly diagnosed cases showed evidence of linkage to care within 30 days of diagnosis, and 86% showed linkage within 91 days -- not far from the Ending the Epidemic target of 90% within 30 days.
However, King also says he feels that the bill's language should not be too specific about post-diagnosis policy, which should be left to the AIDS Institute to write guidelines for after the law is passed.