The New York State Senate in session.
The New York State Senate in session. Photo: Nathaniel Brooks for The New York Times

Supportive Housing, PrEP/PEP Access and Protecting Youth From HIV Are on Our Legislative Agenda

GMHC V.P. of Policy Jason Cianciotto anticipates a busy legislative session in Albany in the new year for HIV-related funding and legislation. In addition to essential legislation for supportive housing, access to HIV medication, and ending discrimination by insurers based on HIV status, GMHC is exploring important new initiatives to reduce the risk of youth contracting HIV.

Protecting Youth From HIV

GMHC is working on three initiatives that support young people’s ability to protect themselves from HIV—a population often unable advocate for themselves in Albany, but who experience high risks for HIV.

“GMHC serves thousands of people every year who need support because of the wounds that they have experienced throughout their lives. We do the best we can to help heal those wounds,” Cianciotto said. “But we’re not going to end HIV and AIDS if we don’t help prevent those wounds from happening in first place, often when people are young.”

At the most practical level, GMHC is continuing to support a bill to allow minors to obtain HIV and STI testing and treatment without parental consent. That includes access to the MPOX (monkeypox) vaccine.

“A hostile family situation that is homophobic or transphobic contributes to HIV transmission among youth,” Cianciotto said. “For young people in this situation, there can be fear that they risk getting thrown out of their house if they must ask their parent for permission to get a test for HIV, other STIs, or MPOX, and then to obtain related medical care.”

HIV Prevention Education

GMHC is working to ensure that HIV prevention is part of comprehensive sex education in schools statewide. Cianciotto discovered that New York public school principals have the discretion to inform parents that they can opt out of the HIV prevention portion of the sex education curriculum, because he and his husband received such a letter when their son was in high school.

“Parents can’t opt out from having their children learn that they can prevent syphilis by wearing a condom—but they can opt out from having them learn that wearing a condom can prevent HIV,” Cianciotto said. “It makes no sense.”

“The opt-out provision sends a stigmatizing message that there is something shameful around HIV, as well as sexuality in general,” he added.

GMHC has learned from staff at the New York State Education Department (NYSED) that the opt-out for HIV prevention education was created in 1987 and hasn’t been updated since then. The NYSED’s Health Educator can update the regulation, Cianciotto said, but that position has not been filled since 2012.

That means that the governor and state legislature either need to budget funds to hire a NYSED Health Educator or pass a law that ensures HIV prevention is part of comprehensive sex education throughout the state. GMHC is exploring both options with allies such as Planned Parenthood, which is pushing for comprehensive sex-education legislation.

HIV and Youth in the Foster System

GMHC is also exploring a new initiative to support LGBTQ+ youth in the foster system who are at higher risk for HIV.

Over one-third of youth in the NYC foster care system identify as LGBTQ+. That’s three times the rate of LGBTQ+ youth in the population at large. What’s more, they are more likely to be youth of color, to bounce through multiple foster homes, to age out of foster care without being adopted, and to become victims of violence, according to a recent Columbia University study.

However, there is no existing data source to help answer basic questions such as the number of youth in foster care who are living with HIV and what access to HIV prevention and treatment they have, Cianciotto said. “That information is critical to understanding how to best support this largely invisible population at high risk for HIV,” he said. “You can’t craft a policy if you don’t have the basic information about the people you are trying to help.”

GMHC is exploring asking the New York State Legislature or New York City Council to fund a study of foster youth to shed light on these basic questions. Since the state’s foster system is locally managed by each of New York’s 62 counties, it is likely more practical for the state to fund a pilot study in one or more major cities, such as Buffalo, Syracuse, Albany, and/or the NYC metro area.

Ensuring Medication Access

Increasing access to HIV prevention and treatment medication is fundamental to GMHC’s work. This is threatened by a state plan to reduce Medicaid spending that would redirect an estimated $250 million from community health centers and other Medicaid providers participating in the federal 340B pharmacy program to the state. GMHC launched a 340B pharmacy in September of this year.

As a member of the Save NY’s Safety Net coalition of 340B pharmacy providers, GMHC is advocating with Gov. Kathy Hochul and the state legislature to stop this plan, which could shutter community health centers statewide and would heavily impact low–income Black and Brown New Yorkers who are already the hardest hit by the HIV/AIDS and COVID-19 pandemics–and now, the MPOX outbreak.

Community health centers rely on the revenue from their 340B pharmacies to fund psychosocial support services to clients, Cianciotto said. “You can’t just pull the rug out from under these organizations and expect that they won’t be dramatically impacted. The state’s plan would place people living with or at high risk for HIV in danger of losing the services they rely on at community-based organizations they trust in obtaining their medication.

PrEP/PEP Expansion

GMHC is also backing two bills that would expand access to PrEP (pre-exposure prophylaxis) and PEP (post-exposure prophylaxis) medications, which are highly effective at preventing HIV infection.

State Senator Brad Hoylman is expected to again sponsor a bill with Assemblymember Danny O’Donnell to bar insurers from requiring prior authorization for PrEP. (No prior authorization is needed for PEP, because it’s for a medical emergency.)

Former Governor Andrew Cuomo issued an executive order prohibiting prior authorization for PrEP–but codifying this protection into law makes it more permanent and enforceable, Cianciotto said.

Hoylman is sponsoring another bill with Assemblymember Didi Barrett that would allow pharmacists to dispense PrEP in limited quantities without a prescription, to encourage greater access to this safe, effective HIV-prevention medication.

No Insurance Discrimination for HIV

GMHC is also working on new legislation to prevent NYS insurers from denying long-term disability and supplemental life insurance for people living with HIV. Cianciotto said the agency started working on this issue in the last legislative session, after learning that a few of its own staff were denied such insurance because of their HIV status.

“There is no reason for insurance providers to solely use HIV status as a determinant of supplemental insurance coverage, considering that the medications we now have to treat HIV help ensure that people living with HIV have equivalent life expectancies to people who are HIV-negative,” Cianciotto said. “This discrimination is unnecessary, and it creates additional stigma for people living with HIV.”

Cianciotto said attorneys in the governor’s office have expressed interest in supporting the issue, and GMHC plans to introduce a bill in the upcoming session that’s modeled on a law passed as part of the California state budget in 2020, the Equal Insurance HIV Act.

Housing First!

As part of the Ending the Epidemic state coalition, GMHC is advocating for funding that would increase access to supportive housing across New York state for people living with HIV who are homeless or unstably housed.

This need really hit home when NYC Mayor Eric Adams recently announced that, effective Nov. 29, police officers would start involuntarily committing people who experience mental health crises to hospitals–a directive that most immediately affects homeless people. Prior to the new mayoral directive, NYC’s policy had been to commit only people deemed an immediate risk to themselves or others, generally by threatening harm. Adam’s directive is currently on hold, due to a lawsuit filed by homeless and mental health advocates.

People who are living with HIV and unhoused are likely to have co-occurring mental health and substance use issues, placing them at greater risk for involuntary commitment. GMHC is advocating for the Mayor’s Office to adopt our Housing First model, which immediately provides housing to those in distress, along with comprehensive case management and support services that meet other basic needs, like food, mental health, and substance use counseling.

GMHC knows from decades of experience that providing supportive housing first for people who’re living with or at high risk for HIV and in need of mental health care is far more effective than institutionalization. The longest someone in New York can involuntarily be held for mental health treatment is 60 days—and if they are discharged without housing or a treatment plan, they will likely end up back in the overloaded shelter system or on the streets, perpetuating the cycle.