The state’s onerous procedure to administer HIV/AIDS testing is threatening New Yorkers’ lives, according to a prominent doctor who’s tracked the disease for decades.
The patient “prior consent and notification” requirements to conduct such screenings are more extensive than for hepatitis C or any other sexually transmitted disease, says Diane Futterman, director of the Adolescent AIDS program at The Children’s Hospital at Montefiore.
She’s pushing for legislation to require routine or mandatory HIV testing and to ease the pre-notification and consent rules.
“The unique consent and notification requirements for HIV screening were created in a different era with the good intention of protecting patients’ rights, but today these requirements are actually harming patients’ health,” Futterman said during a recent presentation before the Health Department’s AIDS Advisory Council.
Under current law, HIV testing is voluntary and requires the consent of the patient. Prior to being offered testing, a doctor or other health professional must provide a patient information about HIV/AIDS.
Futterman cited studies of patients at Montefiore Medical Center in The Bronx as evidence that the requirements are counter-productive, harmful and potentially life-threatening.
One study found that 80 percent of “undiagnosed” HIV clients at Montefiore were not tested during their initial emergency department visits.
Another Montefiore study found that 59 percent of patients eligible for hepatitis C screening received it, while just 40 percent of patients eligible for HIV testing did.
“The only operational difference in these tests is the consent/advise requirement,” Futterman said. “We miss people.”
AIDS is still deadly — though not the death sentence it was a generation ago because of medication to treat it. But HIV has to be detected to be treated.
About 15 percent of people who are HIV-positive have not been diagnosed. But a staggering 50 percent of young people don’t know they are HIV positive, according to Futterman.
In 2016, there were 2,052 people in New York City newly diagnosed with HIV — the lowest since the epidemic raged in the 1980s. There are 109,512 people living with HIV in the Big Apple.
Supporters of the proposal for more routine HIV testing include Gay Men’s Health Crisis, Housing Works, Latino Commission on AIDS and the National Black Leadership Commission on AIDS, among others, according to Futterman.
Assembly Health Committee Chairman Richard Gottfried (D-Manhattan) said he’s considering a bill “to remove the HIV special notice and consent” rules — though a patient would still have the right of refusal.
“It would make it more like ‘routine’ medical tests,” Gottfried said.
Still, not everyone is on board. Civil libertarians worry about protecting privacy because of continued stigma around the disease.