OPINION: Medicaid at risk: Patients, providers and the impact of proposed cuts (updated)

BioNJ warns changes would burden vulnerable NJ residents

Debbie Hart//May 28, 2025//

A ripped dollar bill removing Washinting's face so that the word Medicaid shows through.

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BioNJ warns changes would burden vulnerable NJ residents

Debbie Hart//May 28, 2025//

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“My diagnosis is debilitating. When I was first diagnosed, the fatigue was so bad, it took all my energy just to eat a meal,” says Sarah J., a patient and advocate living with EGPA, a form of vasculitis. “How are people with a diagnosis like this expected to fulfill Medicaid work requirements, or complete the paperwork to secure an exemption?”

Medicaid is a crucial program that provides millions of low-income individuals and people living with disabilities with access to health care, treatment and essential services. The program covers 1-in-5 households, or approximately 80 million people across the country – including 40% of all children and 60% of all nursing home residents. It also reimburses hospitals, community health organizations, and physicians for the care and treatment they provide.

New Jersey’s Medicaid program, NJ Family Care, serves approximately 1.7 million residents. Nearly half are children, adults living in long-term care facilities, and adults with chronic health conditions or disabilities. Patients with special needs – people with a severe physical, developmental, behavioral or emotional condition – qualify for additional care and services through NJ Family Care.

Medicaid misconceptions

“I think it’s a common misunderstanding that Medicaid only pays for medical bills. It’s so much more than that,” says Lauren Zalepka, incoming board president of The Arc. Lauren’s daughter, Dani, is diagnosed with autism, a processing disorder and a cognitive disability – or an Intellectual Development and Disability. Dani is one of millions of people with an IDD who access comprehensive medical care as well as behavioral health services through Medicaid programs.

“TheARC protects children with autism and cognitive disabilities. They empower IDD patients with life skills – teaching them to cook, shop, make change, fill out paperwork and find ways to manage their feelings. TheARC has been so beneficial for Dani; losing it would be horrifying,” Lauren explains. “And it only accepts patients on Medicaid.”

Medicaid is funded both by states and the federal government, which sets national standards for care and covered services. As Congress works to advance a new spending bill containing large tax cuts, Medicaid has become a target for savings to offset the lost tax revenue. While the final legislation requires Senate approval, the bill that passed the House of Representatives May 22 would reduce Medicaid spending by at least $625 billion.

People are being told the cuts aim to eliminate Medicaid “fraud and abuse.” But the changes go a lot further. They potentially redefine who qualifies for Medicaid, and who is able to access insurance and care.

Cuts coming

New work requirements in the bill would require frequent eligibility checks from people with disabilities and chronic diagnoses. Other changes reduce food assistance programs and ACA [Affordable Care Act] marketplaces. Congress has also considered downsizing the Medicaid Expansion population or replacing the federal funding “match” with a per capita cap or block grants. The moves would place more burden on states to cover the actual cost of patients’ care.

The Congressional Budget Office projects changes contained in the bill could result in 7.6 million people losing access to health care. As a result, many patients would face new out-of-pocket costs for treatments and health services. Additionally, the changes could be especially hurtful to people living with neurological conditions as well as chronic, rare or genetic diseases.

“Even a 5% reduction in funding would hurt patients enormously,” says Lauren. “It will affect our hospitals and emergency rooms. We already see some children and adults remaining in a hospital for months because they can’t afford treatment elsewhere, and they can’t be sent home if it’s not safe. Reducing federal funding will make that a lot worse.”

“People should understand that these changes shift the costs. Uncovered people will rely on hospital emergency rooms for care. They’ll put off seeing doctors until their conditions worsen and are more expensive to treat,” says Sarah.

“And I’m really worried about the work requirements. I know from experience that battling a serious condition is a struggle. And government entities don’t make these processes easy. Many patients will lose their Medicaid coverage simply because they can’t complete, or keep up with, the paperwork.”

Advocating for access

BioNJ‘s mission is to ensure a vibrant ecosystem that supports new science, and the creation of companies in the state to develop and deliver lifesaving treatments for patients. Medicaid is an essential part of this ecosystem, ensuring a diverse population of patients can access care and treatment. We fear that federal cuts to the program will harm the sickest and most vulnerable among us.

BioNJ is advocating for continued Medicaid funding as well as careful consideration of any program changes to ensure the best outcomes for patients.