Lobbyists and advocacy groups on Tuesday delivered “Valentine’s Day” 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-supporting drugs to people with HIV.
The program, which began in 1992, benefits health centers and other organizations that serve people with HIV and AIDS, including state Ryan White centers. Patients usually need several medications a day.
The centers purchase the drugs at cost, but are reimbursed at the higher rate that health plans pay for the drugs. They can then use the difference to pay for support services.
Hochul is trying to end the program in his state budget plan, arguing that consolidating the program and reimbursing pharmacies directly for drugs will save money and provide more access to drugs.
But supporters 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 does not cover for their clients, who are among the most society’s vulnerable. Things like housing, food, mental health services, and transportation to doctor appointments.
Junjulas has been taking medication to control HIV for nearly 30 years.
“I was supposed to die in three months, back in ’95 when I was diagnosed,” said Junjulas. “And as new drugs came along, I used all the new drugs.”
But he said he has a steady job and can access the medicine he needs. Many of his clients are uninsured or underinsured and not so lucky.
“Medications are imperative to keep going, but you can’t access medications today if you’re homeless, or if you’re starving, or if you can’t get any support to go to the doctor,” said Junjulas.
He added that most patients at the center are from communities of color.
“So it also turns into a health equity issue,” he said.
Anthony Randolph is a customer of Harlem United, which offers a wide range of healthcare services. He came to Capitol Hill to tell lawmakers they shouldn’t cut the program.
Randolph, who has HIV, said the organization helped him get his medication when a local pharmacy refused to fill a prescription and even helped him find a home.
“I get my housing from them. And that will affect my housing,” said Randolph. “If that happens, they may have to cut their housing program. I won’t have a place to live.”
Health centers also said that Hochul’s proposed changes do not include enough additional money to offset the hundreds of millions of dollars they would lose. They said this would “destroy” the centers and end the progress they had made in the fight against the HIV and AIDS epidemic.
Junjulas said he would lose a quarter of his entire budget and would have to start cutting staff and programs in April, when the change would take effect according to the governor’s plan.
“I’m going to have to make some terrible, terrible decisions,” he said. “I didn’t get into this business not to help people.”
The groups have offered compromise legislation that they say achieves the savings the Hochul administration wants, but keeps the pharmacy benefit within managed health plans and “does not destroy the mechanism” they use to fund the other services.
The chairs of the legislative health committees, both Democrats, were receptive to the idea.
Senate Health Committee chairman Gustavo Rivera said he opposes ending the program.
“I want to make sure we can work together to reach an agreement where these services can continue to be provided,” said Rivera. “And you can be treated fairly.”
He asked lawyers to lobby their Senate counterparts, who may still not be convinced.
Supporters left their Valentine messages, including a large poster, at Hochul’s offices. The governor was on Capitol Hill, but she did not speak publicly.