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She was diagnosed with epilepsy at age 11. Trump’s Medicaid cuts could end her life-saving treatment

Jocelyn Smith watched Congress debate Donald Trump’s domestic spending bill, the so-called “One Big, Beautiful Bill” with trepidation this summer – wondering what the bill’s passage would mean for her daughter, who receives care for her juvenile epilepsy under Medicaid.

“I don’t know what we’re going to do with her medicine, it’s so expensive,” Smith said. “It’s a lot of what-ifs.”

Now 18, her daughter Aibhie was diagnosed with juvenile epilepsy when she was 11 years old. Since then, she and her mother have mastered the three-hour drive between their home in Roswell, New Mexico, and the nearest neurologist in Albuquerque – hoping to find a medication combination that would suppress Aibhie’s monthly seizures.

In November, surgeons implanted a vagus nerve stimulator under the skin in Aibhie’s chest – the device is frequently used to help control medication-resistant seizures. But, Smith says, Aibhie’s still having two to three seizures a month – too many to live alone or drive, hold down regular hours at a job or go away to college.

All of these costs were covered by Medicaid. In the United States, children can remain on their parents’ Medicaid coverage until they turn 19 in most states (some states, like California, extend that age limit to 21, and 26 for former foster youth).

“I was sitting on my hands watching this bill being voted through and I was pretty much in tears because I’m like, ‘Wow, what’s going to happen if this passes?’ and sure enough it passed,” Smith said.

Donald Trump’s signature tax-and-spending bill will cut federal spending on Medicaid and the Children’s Health Insurance Program (Chip) by $1.02tn, and remove at least 10.5 million people from the programs over the next decade, according to the Congressional Budget Office. A significant number of those affected are likely to be children: half of all children in the United States are covered through Medicaid or Chip. Although children make up a quarter of the United States population, they account for only about 10% of the country’s total healthcare spending.

The spending bill “really puts kids last”, said Bruce Lesley, president of the bipartisan children’s advocacy group First Focus Campaign for Children. “If our goal is to get all children covered, we are taking giant steps backward in this bill.”

Those health impacts are likely to be felt especially strongly in New Mexico - where residents rely on Medicaid at the highest rate per capita in the nation. More than 40% of New Mexicans, or 878,000 people, are enrolled in the program. Almost two-thirds of the state’s children are covered under Medicaid.

“We’re potentially the hardest hit,” said Gabrielle Uballez, executive director of the non-profit New Mexico Voices for Children. “In New Mexico, the federal government pays $3 for every $1 New Mexico spends on its [Medicaid] program,” she adds, making New Mexico the state most dependent on federal Medicaid match dollars.

“It’s very scary,” said Smith, who worries her daughter will lose coverage, just as she enters adulthood. “I don’t see how people are supposed to live.”

Smith, 44, and her daughter have been insured under Medicaid for a few years now, since Smith’s own health deteriorated, sending her to the emergency room for monthly visits as the symptoms of her Crohn’s disease and rheumatoid arthritis worsened. Smith works as a video producer at her local radio station, and volunteers with food distribution and housing programs.

After her application for Medicaid was approved, Smith said, “I was able to start seeing doctors again and was able to see what was going on, and try to get back on medication.”

Medicaid also covered her daughter’s care when Smith had to scale back her hours at work to get medical treatment. Aibhie was also recently approved for coverage under Social Security Disability Insurance, or SSDI.

But the nearest specialists were hours away and the expense of gas to travel there added up. Smith and her ex-husband had moved back to her home town of Roswell after their daughter and older son were born. They hoped having family nearby would help them save on childcare costs, which felt out of reach in the larger Texas cities where they had lived. Now, Smith found herself in a rural area that put her too far away from the medical specialists she and her daughter required.

“In order for these surgeries to happen, we have to take off of work,” said Smith. “We just can’t afford to continuously be going up there. It’s really hard for us to make that trip.”

Advocates worry that all rural families, not only those on Medicaid, will be affected by cuts to the program. An analysis prepared by the Cecil G Sheps Center for Health Services Research at the University of North Carolina for US Senate staff found that 15 rural hospitals in New Mexico (and 300 across the country) could shutter as a result of Medicaid cuts in the domestic spending bill.

“There’s not one hospital for people who are on Medicaid and a different hospital for those who are not,” said Uballez, who notes that rural hospitals are highly dependent on Medicaid reimbursement to stay open. “You pull the people who are on Medicaid and it unravels everything else for everybody else.”

Aibhie is able to see a neurologist at the University of New Mexico, which Medicaid reimburses the family for. Most of her appointments can happen by video call. But last November she and her mother traveled to Albuquerque to have the vagus nerve stimulator implanted.

“Luckily Medicaid did pay for our motel, so we were able to stay there for two days,” said Smith. “But that’s just a motel. That doesn’t cover food, that doesn’t cover gas. It’s a pretty rough surgery and we just couldn’t afford to go back and forth.”

Aibhie’s neurologist had hoped the device would significantly reduce the frequency of her seizures, though that hasn’t proved the case so far. While she navigates more medication changes, Aibhie’s had to quit her first job as a barista – her seizures proved too disruptive.

“She is on some very expensive medicine and of course this device is pretty expensive,” said Smith. “I don’t know how we would even begin to cover that if she was to be cut off” from Medicaid.

“I can’t even afford to get my medicine at this point because of copays,” said Smith. She’s going without it, despite the pain, but is quick to add: “My daughter is a different story because that’s medicine to basically make her live.”

Before Congress established the Children’s Health Insurance Program in 1997, about 14% of American children were uninsured. Lesley of the First Focus Campaign for Children remembers that the program also forced lawmakers to reconsider Medicaid policies, spurring them to simplify enrollment, allow retroactive coverage for babies and coordinate benefits between programs. By 2016, the uninsured rate for kids dropped to an all-time low of 5%.

“And then the Trump administration came in and we started a series of rollbacks,” he said. In Trump’s first term, the administration invited states to submit waivers to cut Medicaid funding and implemented work requirements. In 2018, the US census reported that the uninsured rate for children had crept up to 5.5%, “largely because of a decline in public coverage”.

There’s no government estimate of how many children will lose insurance coverage under the new domestic spending bill, says Lesley. But based on how many children are insured through Medicaid or Chip, he expects “there’s probably going to be a disparate impact on kids”. Researchers at the Commonwealth Fund estimate that one in five of those enrolled children could be at risk of losing coverage.

Soon after the domestic spending bill passed, New Mexico state legislators formed a committee to study how federal cuts will affect the state’s budget. On 1 October, the legislature will meet for a special session convened by Governor Michelle Lujan Grisham to address upcoming Medicaid enrollment changes.

Although New Mexico is likely to feel the greatest effects of budget cuts, Uballez says, “we’re also a state that has a legislature that’s done a really good job at saving money for a rainy day.” She points to trust funds the legislature has established that invest state revenue, largely from oil and gas money, in order to pay for early childhood education, housing and other social programs.

In August, Deb Haaland, the former interior secretary under Joe Biden who is running to replace Lujan Grisham when the current governor’s term expires in 2026, told voters: “We’re told we need to save our money for a rainy day. Newsflash: it’s pouring. It’s time New Mexico put its abundance of state funds to use investing in our communities, making life more affordable, improving our schools, fixing roads, and making communities safer.” Haaland has noted that she was covered under Medicaid when she gave birth to her child in the 1990s.

For now, though, Smith says her family is continuing to navigate the financial insecurity of inflation, layoffs (Aibhie’s father works for a labor department program facing federal cuts) and Medicaid cuts. “We can’t even be at a savings point right now because we have to dip right back into it in order to survive week to week,” said Smith.

Aibhie had been looking forward to starting college at New Mexico State University in the fall where she planned to pursue a degree as a veterinary technician. Her unresolved health issues made that future uncertain, but the possibility that she might lose health insurance coverage sealed the deal. Aibhie will live at home for another year and instead enroll in the local community college to take her general credits. “I know she’s disappointed,” said Smith.

She fears that healthcare access for Americans is growing ever worse. “It’s very scary, I just shake my head, like, ‘God what are we going to do? Just live until we die?’”

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