Parents of kids with cancer fear GOP budget cuts could slash Medicaid

NBC News

25-04-2025

By Elizabeth Cohen
Tony, an energetic 7-year-old who loves playing football and roughhousing with his brothers wasn't all that excited when his parents took the family to see Santa in December. Instead, he was tired and lethargic.
His parents were surprised because Tony would usually be bouncing off the walls at the prospect of seeing Santa.
Tony had been feeling under the weather for a few weeks, and his pediatrician diagnosed him with a virus and bronchitis. But after the visit to Santa near their home in Wesley Chapel, Florida, Pauline McLaurin says, her mother's intuition told it was something more serious.
She took her son directly to the emergency room, and her gut instinct was right: Tony had leukemia. From there, things got worse.
Tony has been in and out of the hospital, his body weakened by chemotherapy. Pauline McLaurin quit her job as a fifth-grade teacher to care for him, and they struggle to pay their bills on the salary her husband, Ronnie McLaurin, makes as an electrician.
As if that weren't enough, the McLaurins have a new worry. They lost their private insurance when Pauline McLaurin left her job, and now they fear losing their Medicaid, the government health insurance program that pays for Tony's care.
Medicaid insures 1 out of 3 children diagnosed with cancer in the United States, according to the American Cancer Society's Cancer Action Network.
President Donald Trump and Republican lawmakers have called for dramatic government budget cuts that many nonpartisan experts say are unfeasible without significant cuts to Medicaid.
A House Republican budget plan instructs the Energy and Commerce Committee, which oversees Medicaid, to identify at least $880 billion in mandatory spending cuts over the next 10 years. While the plan doesn't specifically mention Medicaid, the experts say it would be unfeasible for Republicans to hit that target without significant cuts to the health program, since it's one of the largest sources of federal spending, costing more than $600 billion per year, according to government data.
Pauline McLaurin said she is 'terrified' and 'hopeless' at the prospect of losing Medicaid.
'It's a very scary, uneasy feeling,' she said.
The McLaurins are not alone.
Mary Ann Massolio runs 1Voice Academy, a school for children with cancer, which Tony attends. She says over the past few months, many parents have expressed distress about possibly losing Medicaid.
'It's anxiety on steroids,' she said.
In February, the American Academy of Pediatrics and other groups wrote a letter to lawmakers expressing their 'grave concerns' about potential Medicaid cuts and 'the devastating consequences for millions of children across the country.'
If these Republican budget cuts go through, some children with cancer could die, said Dr. Sharon Castellino, who studies Medicaid as a pediatric oncologist at the Aflac Cancer and Blood Disorders Center of Children's Healthcare of Atlanta, and a professor of pediatrics at the Emory University School of Medicine.
'This is a bipartisan issue,' she said. 'We're incredibly worried.'
Trump: Medicaid won't be 'touched'
As of November 2024, Medicaid covers more than 70 million people in the U.S., according to the federal government's Centers for Medicare and Medicaid Services. It's the largest single source of health coverage in the U.S., covering nearly half of all children and more than 40% of births, according to the American Hospital Association.
A 2024 study, conducted by Emory's Castellino and other researchers found that children who experienced interruptions in Medicaid coverage before or during their cancer diagnosis and treatment were less likely to survive the disease, compared to those with continuous coverage.
Republicans say budget cuts can be made without hurting Medicaid.
'Medicare, Medicaid, none of that stuff is going to be touched,' Trump said in February.
'The president has said repeatedly, we're not going to hurt Social Security, Medicare and Medicaid recipients who are eligible for it. And that is our guiding north, our true north,' House Speaker Mike Johnson, R-La., told Punchbowl News last month.
In his rural Louisiana district, nearly 25% of adults under age 65 rely on Medicaid, according to an NBC News analysis.
'I understand this acutely — it directly affects my people. We're going to be very careful not to cut a benefit for anyone who is eligible to receive it and relies upon it,' Johnson told Punchbowl.
But last month, the Congressional Budget Office, which is nonpartisan, said House Republicans can't meet their budget target without making significant cuts to Medicaid or Medicare, the nation's health insurance program for seniors.
In the House, the Medicaid budget falls under the House Energy and Commerce Committee, and the Republican budget plan instructs that committee to cut spending.
In February, Johnson said that 'we're going to cut the fraud, waste and abuse and that's where we're going to get the savings to accomplish this mission.'
It would be very difficult to make the proposed Republican cuts just by targeting fraud, waste and abuse, said Megan Cole Brahim, an associate professor at the Boston University School of Public Health and co-director of the school's Medicaid Policy Lab.
'This on the surface seems like a reasonable idea — nobody likes fraud, waste or abuse,' she said. 'But there is a misalignment between the proposed cuts the Republicans are trying to make [and] the actual scope of fraud and waste.'
Johnson identified another way he intends to save Medicaid dollars.
'You've got a lot of able-bodied workers, young men who could be out working, who are choosing not to because they're on the government wagon,' he told Punchbowl. 'I think that's wrong, and I think if you get those people out of the program — and there's a large number of them — then you preserve it for the people who actually need it and deserve it.'
Cole Brahim called this a 'false narrative,' pointing to a KFF study that shows in 2023, nearly two-thirds of adults ages 19-64 covered by Medicaid were working and nearly 3 in 10 were not working because of caregiving responsibilities, illness or disability, or school attendance.
In the McLaurins' case, Ronnie McLaurin doesn't have health insurance through his work as a self-employed electrician.
'T his is not a done deal yet'
At this point, the Republican budget proposals are just that — proposals. The House and the Senate each have their own plans, and nothing has been written into law yet. The House Energy and Commerce Committee could meet as early as the week of May 5 to identify the spending cuts that could slash into Medicaid.
That's why Massolio at the 1Voice Foundation — the group that runs the school Tony attends in Florida — joined a trip to Capitol Hill earlier this year with other advocates to urge lawmakers to keep Medicaid intact.
She says one of her big fears is that even if Medicaid funds for hospital services and doctor visits remain stable, other critical support services might be slashed, such as transportation to doctor's appointments or in-home nursing visits for very sick children.
On her trip to Washington, one of Massolio's first stops was the office of Rep. Kathy Castor, D-Fla., a familiar face. Massolio's 9-year-old son, Jay, died from lymphoma in 1997, and she's often turned to Castor, who is co-chair of the congressional Childhood Cancer Caucus, for help advancing legislation to support children with cancer.
Castor's message to the group was to keep fighting. She reminded them that in Trump's first term, he vowed to eliminate the Affordable Care Act — also known as Obamacare — but in the end, after widespread public opposition, it didn't happen.
There are already tensions within the Republican Party over Medicaid, with some in the party expressing concern that the proposed budget cuts could hurt families on Medicaid.
'Advocacy really matters. This is not a done deal yet,' Castor told NBC. 'As they craft policy behind the scenes, I'm really hoping some of these Republican members go and say, 'I can't do this. This hurts families. This goes too far.''
Back in Florida, the McLaurins worry every day that Tony won't survive, as they struggle to pay their bills and care for their other five children without any family nearby to help.
They don't know what they'll do if Tony can't get Medicaid for the rest of his cancer treatment, which is expected to last another two years.
'I feel hopeless right now, because it's not like I have a second option,' Pauline McLaurin said.
She hopes Castor is right, and that advocacy will help protect Medicaid.
'I'm trying to just look at that and pray that's the truth,' Pauline McLaurin said. 'What else can I do?'
Elizabeth Cohen
Elizabeth Cohen is an award-winning health journalist and author of The Empowered Patient. Previously, she was senior medical correspondent at CNN and reported on the scene from global health crises including the Ebola outbreak in Liberia and the earthquake in Haiti. Her work has been recognized by the Sigma Delta Chi/Society of Professional Journalists, the National Association of Black Journalists, and the Association of Health Care Journalists. She holds a master's degree in public health.