Proposed legislation calls for eliminating funding for the Centers for Disease Control and Prevention’s HIV prevention programs and for Ryan White HIV/AIDS Program grants that go directly to clinics to support care and treatment, dental care, and workforce programs. It would also put an end to the Ending the HIV Epidemic initiative. The Ryan White HIV/AIDS Program was instituted to reduce the impact of HIV by offering services, which include the support, testing, and treatment of individuals living with HIV disease. Ultimately, this will reverse decades of progress in the fight against the HIV epidemic.
This would throw a wrench into the operations of organizations relying on funding to provide services to individuals who are living with the disease, as well as agencies who are doing valiant work in HIV preventive measures.
Dozens of organizations and agencies across New Jersey count on HIV funding to operate and provide services that are indispensable in fighting the disease and enable individuals to live with it. These agencies receive funding through the State of New Jersey, which obtains funding through the federal government.
One of those organizations, the Hyacinth AIDS Foundation, receives a combination of state funding and direct federal funding through CDC, HRSA and SAMHSA.
“The first cut that we were most concerned about was part of the ‘big beautiful bill,’” said Axel Torres Marrero, senior director of policy and prevention at Hyacinth. “There was a cut of $880 billion to Medicaid, so that’s the first impact. The majority of individuals living with or at risk of HIV receive direct medical care through Medicaid.
“What that would do is handicap the state’s ability to keep everyone who’s currently on Medicaid in the program. New Jersey, based on that cut, would have to make difficult decisions — eligibility requirements, whether the managed care programs stay the same, whether there’s benefits structure changes, which types of medications would be covered.”
Many agencies are concerned that thousands of individuals will be in jeopardy and New Jersey will see more infections, lost lives, and a collapse of a public health infrastructure.
“The proposed bill would undo decades of progress in the fight against HIV. For years, organizations like SJAA have worked to normalize testing, reduce stigma, and ensure access to lifesaving medications like PrEP and antiretroviral therapy,” said Georgett Shelton, president and CEO of South Jersey AIDS Alliance (SJAA), who voiced those concerns and more. “Defunding these efforts would shatter these gains, drive infection rates higher, and harm marginalized communities most. It would be both a public health failure and a moral failure.”
According to Joann McEniry, chief executive officer for Edge New Jersey, cuts to HIV funding, coupled with a reduction in Medicaid, will have a devastating impact on HIV care, treatment and prevention in our state.
“Today, Medicaid is the largest provider of direct healthcare services to individuals living with HIV, with Ryan White supplementing shortfalls as a payor of last resort,” she said. “It is anticipated that up to 1,850 individuals in New Jersey who rely on Medicaid for healthcare will face elimination from cuts to that program.”
A devastating impact
“We provide critical HIV prevention, HIV and STD testing, case management, and care coordination for people living with HIV, and harm reduction services across Atlantic, Cape May, and Cumberland counties,” said Shelton. “These cuts would force us to drastically scale back or even eliminate services that save lives and prevent new infections.”
For agencies affected by a loss in funding, the battle continues.
“We tried our very best to fight the cuts at the federal level, but it still went through,” said Marrero. “Currently right now we’re operating as a shutdown. The best possible scenario would be a continuing budget resolution.”
House of Representatives cuts to the HIV service landscape are drastic.
In addition to Medicaid, funding cuts to others, such as the Ryan White HIV/AIDS Program, would be catastrophic for New Jersey and beyond.
“For the first time in years, all Ryan White Part-A funded organizations in Morris, Sussex, Warren, Essex and Union counties were notified that the region received a funding cut,” McEniry said. “As a result, EDGE New Jersey’s HIV grant funding was reduced by 6.2 percent from the previous year. While we called on private funding and the 340B program to help offset this loss and maintain our services, for some agencies, this meant the loss of critical lifesaving programs such as HIV medical case management, necessary to help people navigate the complex healthcare system in our state.”
Several agencies are holding out hope for a positive outcome. But Marrero also expressed concern that the federal administration will enact a rescission cut, and in that rescission package will be CDC prevention dollars — which the state and community-based organizations use to provide for PrEP, for individuals at risk.
“The incoming budget Congress will take up immediately after the shutdown is over. In that budget cycle, we’re concerned because if you look at what congressional Republicans have proposed on the House of Representatives’ side, those cuts to the HIV service landscape are drastic,” said Marrero.
Elizabeth Schedl, executive director of the Hudson Pride Center, said the agency would be in an incredibly vulnerable position due to the growing threats at the federal level to cut or restrict funding.
“Our work exists because of a delicate patchwork of grants, most of which come from the federal government and are distributed through city, county, and state agencies,” said Schedl. “It could mean cutting essential services, laying off staff, and possibly closing our doors. Our Jersey City and Union City centers, now essential homes for our community, would be at risk.”
According to Sal Susino, manager of special initiatives for the Prevention Resource Network, the bigger question is how the kinds of cuts to federal programs and services will affect their clients and patients.
“We are already seeing cuts in services from HRSA,” said Susino. “And it is affecting our populations — undocumented people, low-income people.
“As the CDC changes its stance on how it is going to treat people, and the removal of various CDC-funded information portals to specific populations, it will affect how queer people are treated. We need to understand that when the CDC and HRSA remove all references to LGBTQ people, it will all lead to a lack of general knowledge about things like PrEP and PEP — both methods used to prevent infection. It will also lead to misinformation around U=U (undetectable = untransmittable).
“In the prevention world and the services that we’re able to offer to trans people, all of those things are vital to the health and welfare of our community,” said Susino. “When people don’t have certain services they need, they may resort to having to rely on survival sex, which then puts them again at risk. They’re not just at risk for HIV; they’re at risk for all the sexually transmitted infections that are out there.”
According to Michael Roland, The Center in Asbury Park’s executive director, the proposed funding cuts would devastate the Housing Opportunities for Persons with AIDS (HOPWA) completely. The mission of the Center is to connect at-risk community members to comprehensive healthcare, safe and supportive housing, and wellness through education, collaboration, and advocacy.
“I think in one proposal they’re talking about moving it over towards Section 8 housing and combining it, and in one of the options they’re talking about cutting it completely,” Roland said. “It would be disastrous for us. Not only for us as an organization but for our clients who are struggling with mental health, drug addiction, and growing older with HIV.
“Without housing, you have more people unhoused. Without housing, they are less likely to be engaged in care. And we will have more people with infections, more deaths.”
Working together for a common goal
“Congressional Republicans are proposing eliminating Parts C, D, and E of the Ryan White Care Act, a 50 percent reduction to the housing opportunities for people with AIDS,” said Marrero. “They are proposing to gut the minority AIDS initiatives. And, if they go along with the President’s proposed budget, the cuts are less draconian but still significant. Our only chance would be that when the budget gets to the Senate, we work with our senators to increase those levels to offset those cuts.”
A representative from the North Jersey Community Research Initiative expressed concerns about the potential impact of federal funding cuts to their organization, particularly regarding HIV and PrEP medications. The organization highlighted the uncertainty surrounding the future availability of these medications and the potential consequences for their clients, including increased infection rates and reduced access to essential treatments.
The organization is concerned that there is a genuine risk that funding cuts could affect the availability of these medications, even for those who can afford to pay out of pocket.
