A Missouri mother's plea: ‘Without Medicaid, we would lose everything'

CNN

a day ago

Courtney Leader has been closely following the contentious tax-and-spending debate in Washington – not that she cares much for politics, but because she believes the proposed Medicaid cuts are a matter of life or death for her daughter.
'This is not a luxury. I do not have my daughter enrolled on Medicaid so we can have fancy things,' Leader said. 'I have my daughter enrolled in Medicaid so we can keep her alive and keep her at home, which I think is the best option for her.'
As the Senate grinds closer to a vote on a Republican bill containing President Donald Trump's domestic agenda, the real-world implications are playing out across the country at kitchen tables of parents like Leader, whose 9-year-old daughter with brain damage and cerebral palsy relies on Medicaid benefits for daily care and weekly therapy.
She wrote to Sen. Josh Hawley, a Missouri Republican, hoping to put a face on the Medicaid debate. She explained that her husband works as a carpenter, whose private insurance provides health coverage for the couple and their four other children. She said costly medical bills for their daughter, Cyrina, were too much for any household to bear.
'Without Medicaid,' Leader told her senator, 'we would lose everything – our home, our vehicles and, eventually, our daughter.'
Hawley did not identify Leader by name, but he shared her family's story in a New York Times essay last month as he first emerged as a rare Republican warning his party against cutting Medicaid for some of the 70 million low-income and disabled Americans who rely on the program. He called such a move 'morally wrong and politically suicidal,' and has pushed for proposed changes to the bill to avoid what he believes would be a devastating blow to rural hospitals.
It's a pivotal moment in the tug-of-war over Trump's priorities, the centerpiece of which is a sweeping package to extend tax cuts to some of the wealthiest Americans, while reducing social safety-net programs for health care, food assistance and rural hospitals. The president has pledged not to cut Medicaid, even though the current version of the measure would do just that, according to the Congressional Budget Office, and add more than $2 trillion to the deficit over the next decade.
A visit to Missouri, where at least one in five residents depend on Medicaid for health coverage, offered a snapshot of the potential fallout from the sprawling legislation the president and Republicans have branded as the One Big Beautiful Bill Act.
'I know that they're saying they're not planning to cut Medicaid, right?' said Leader, 36. 'But I reached out, concerned that if any changes are made, there will be this trickle-down effect that will impact families like mine.'
As she stood in her kitchen, getting ready to drive Cyrina to a morning therapy session about 30 minutes away, Leader ticked through the costs to sustain her daughter, who was shaken by a caregiver when she was four months old, leading to her condition. She has a complex web of medical and developmental challenges, but can stay in their home because of a nurse and weekly therapy appointments, the co-pays of which are paid by Medicaid, along with a feeding tube, formula and a litany of other supplies.
'The formula that is delivered through a tube in her stomach costs more than my mortgage,' Leader said. 'It costs more than my entire food budget for our family and in that alone, there is no way that we could come up with that $1,500 to be able to feed her.'
While the legislation does not directly call for cutting benefits for medically complex cases, Leader believes that some existing services are still at risk, particularly in-home care that keeps her daughter out of a nursing home. She must recertify for coverage every year – on Cyrina's birthday in May – and believes any significant changes to programs administered by the state will add another layer of bureaucracy that she and other parents routinely endure.
'Who's going to protect us when they can't get paperwork done in time and we lose coverage for a month or two?' Leader said, her voice rising with emotion as she raised concerns about state-level backlogs. 'I'm worried that the red tape is going to affect our Medicaid because of just the oversight burdens and that as a result, I'm going to lose my daughter because she's lost coverage before.'
The Senate version of the bill had been poised to make even deeper cuts to Medicaid than the measure the House narrowly passed last month. Hawley and other senators have threatened to withhold support for the legislation unless Republican leaders make significant changes, particularly to funding rural hospitals, which has complicated Trump's plea to sign the bill into law before July 4.
Republicans were dealt a major setback on Thursday when a key Medicaid change they were counting on to pay for the legislation was ruled in violation of Senate rules. But party leaders have vowed to push forward with new workarounds, with Trump set to rally support for the megabill during an afternoon White House event.
'Senate leadership needs to fix this,' Hawley told reporters this week. 'It's going to close rural hospitals.'
More than 1,000 miles away from Washington, inside the bright hallways of Golden Valley Memorial Healthcare in Clinton, Missouri, a sense of anxiety over the Medicaid debate was evident on a recent afternoon.
The 50-bed hospital is not only a critical piece of the economy as the largest employer in Henry County, but also the only maternity ward and emergency room for about an hour's drive in each direction across this stretch of western Missouri.
'We are paying very close attention because we want to make sure that those Medicaid benefits are preserved so our patients can continue to access care that they need,' said Craig Thompson, CEO of Golden Valley Memorial. 'For rural hospitals like ours, it's ranchers, it's farmers, it's small business owners and it's a whole lot of kids.'
About four out of five patients admitted to the hospital, he said, depend on Medicaid, the health care program for lower-income Americans, or Medicare, the program for seniors. Severe cuts to Medicaid, he said, would unnecessarily send more people to the emergency room and have devastating effects on his and other rural hospitals across the state.
Last fall, Trump carried this rural county with 76% of the vote, which was 17 points higher than his Missouri victory. Yet the politics of health care is complicated, even here in Trump country, where voters also approved a statewide Medicaid expansion measure four years earlier.
Before that vote, Medicaid in the state was largely restricted to the elderly, disabled or pregnant. The expansion vote allowed about 340,000 Missourians to enroll in the program, according to the Missouri Foundation for Health, the funding of which is now uncertain, amid new work requirements and a long list of provisions.
'I think there's a perception that Medicaid beneficiaries are respondent or even lazy, for lack of a better term,' Thompson said. 'That's simply not what we see on a daily basis.'
Dr. Jennifer Blair, who grew up about 45 miles away in the small Missouri town of Peculiar, said she fears maternity wards at hospitals like Golden Valley are at risk if some of the deep Medicaid cuts are realized.
'We are surrounded by several maternity care deserts, which is defined as a county that has no or very limited access to obstetric services for their patients,' Blair said. 'If we were to lose that access to the birthing center here at Golden Valley, our patients would have to travel more than 60 miles.'
Long before the House passed nearly $300 billion in cuts to the Supplemental Nutrition Assistance Program, once known as food stamps, signs of increasing need have been clear at Ozarks Food Harvest, a 100,000-square-foot warehouse on the edge of Springfield. It serves about 30 million meals every year across one-third of Missouri.
'The demand for food is quite a bit higher than it was even at the height of the Covid crisis,' said Bart Brown, president and CEO of the non-profit food program. 'We are seeing lots of new families that we've never seen before.'
The SNAP program has always been solely funded by the federal government. The House measure called for passing along considerable costs to state governments, which are already facing difficult choices and balanced-budget requirements.
The move would have saved the federal government more than $128 billion over the next decade, according to the Congressional Budget Office, which House Republicans hoped to use to help cover the costs of extending the tax cuts. The Senate parliamentarian removed the provision on procedural grounds, making it one of the key differences the Senate and House must reconcile before passing the legislation.
June Owens isn't closely following the back-and-forth of the debate in Washington.
She arrived in a strip mall parking lot in nearby Marshfield shortly after 6 a.m. on a recent rainy morning, so she could get a spot near the front of a long and winding line of cars and trucks. She rolled down the window of her green Mercury to talk for a moment, waiting for the outdoor pantry to open at 9 a.m.
'Life wasn't always this way with us. My husband got hurt a few years ago and it changed our whole life,' said Owens, 77, a retired bookkeeper. 'We were in the process of getting all of our ducks in a row for retirement and it just upside-downed everything, so food pantries have helped us through the situation.'
At Ozarks Food Harvest, seniors are the fastest growing segment of people who ask for food assistance, Brown said, citing their 'fixed incomes and inflation.'
He is carefully watching the tax-and-spending debate in Congress, mindful that whatever the president ultimately signs into law will impact the lives of people in Springfield and across the southern Missouri region his organization serves with a mission statement of 'transforming hunger into hope.'
'Anytime that there's a change in federal benefits that results in a net loss, people have to meet that gap somewhere,' Brown said, walking through his cavernous warehouse. 'They're going to turn to food pantries and we're stretched thin anyway.'