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HIV/AIDS health centers say Hochul's proposal could gut services for most vulnerable

An opponent of Governor Kathy Hochul's plan to cut a Medicaid drug benefit holds a large "valentine" poster that was to be delivered to her office in an effort to change her mind.
Karen DeWitt
New York State Public Radio
Opponents of Governor Kathy Hochul's proposal to cut a Medicaid drug benefit that they say would adversely affect HIV/AIDS patients delivered a valentine to the governor on Feb. 14, 2023, to try to get her to change her mind.

Lobbyists and advocacy groups on Tuesday delivered “valentine” messages to lawmakers at the State Capitol. One thing they don’t love: Gov. Kathy Hochul’s proposal to end a Medicaid drug plan that provides life-sustaining medicines to people with HIV.

The program, which began in 1992, benefits health care centers and other organizations that serve people with HIV and AIDS, including the state’s Ryan White centers. Patients there often require multiple medicines each day.

The centers purchase the drugs at cost, but they get reimbursed at the higher rate that health insurance plans pay for the medicines. They then are allowed to use the difference to pay for support services.

Hochul is seeking to end the program in her state budget plan, arguing that consolidating the program and reimbursing pharmacies directly for the drugs will save money and provide more access to medications.

But advocates say there’s more to consider.

Perry Junjulas, executive director of the Damien Center, a nonprofit AIDS services organization in Albany, said the program allows them to use the extra money to pay for services that Medicaid doesn’t cover for their clients, who are among society’s most vulnerable. Things like housing, meals, mental health services and transportation to medical appointments.

Junjulas has taken drugs to control his HIV for nearly 30 years.

“I was supposed to die in three months, back in the day, back in ’95, when they gave me the diagnosis,” Junjulas said. “And as the new drugs came out, I went on every single new drug.”

But he said he has a stable job and can access the medicines he needs. Many of his clients are uninsured or underinsured and aren’t as lucky.

“The drugs are imperative for going on, but you can not access the drugs today if you are homeless, or if you are starving, or if you can't get to or get any support to be able to go to the doctor,” said Junjulas.

He added the majority of patients at the center are from communities of color.

“So it also turns into a health equity issue,” he said.

Anthony Randolph is a client at Harlem United, which offers a wide array of health care services. He came to the Capitol to tell lawmakers that they should not cut the program.

Randolph, who has HIV, said the organization helped him get his medications when a local pharmacy refused to fill a prescription and it even helped him find a home.

“I get my housing from them. And this is going to affect my housing,” Randolph said. “If this goes through, they might have to cut their housing program. I won't have a place to live.”

The health centers also said Hochul’s proposed changes don’t include enough additional money to make up for the hundreds of millions of dollars that they would lose. They said that would “gut” the centers and wipe out progress they’ve made in fighting the HIV and AIDS epidemic.

Junjulas said he’d lose a quarter of his entire budget and would have to begin cutting staff and programs in April, when the change would take effect under the governor’s plan.

“I’m going to have to make some awful, awful decisions,” he said. “I didn't get in this business not to help people.”

The groups have offered compromise legislation that they say achieves the savings that the Hochul administration wants but keeps the pharmacy benefit within managed care health plans and “doesn’t destroy the mechanism” that they use to fund the other services.

The chairs of the Legislature’s health committees, who are both Democrats, have been receptive to the idea.

Senate Health Committee Chair Gustavo Rivera said he is opposed to ending the program.

“I want to make sure that we can work together with you to get to a compromise where these services can continue to be provided,” Rivera said. “And you folks can be treated fairly.”

He urged the advocates to lobby his Senate colleagues, who might not yet be convinced.

The advocates dropped off their valentine messages, including a large poster, to Hochul’s offices. The governor was at the Capitol, but she did not speak publicly.

Karen DeWitt is Capitol Bureau chief for the New York Public News Network, composed of a dozen newsrooms across the state. She has covered state government and politics for the network since 1990.