Families who rely on Medicaid, Medicare, and the Affordable Care Act for their very survival are regrouping after Republicans passed their deadly bill to cut those programs. The antidote to despair is action, they said, and they called on everyone to step into the fray.
One mom, a Michigander who now lives in North Carolina, said she borrows from her favorite football coach, University of Michigan’s Bo Schembechler, who once vowed to undertake at least one action every day to beat Ohio State.
“It’s about persistence, it’s about sustained effort,” said Stacy Staggs, 48, an advocate with Little Lobbyists and mom to two preteens, one of whom needs around-the-clock medical care, which Medicaid covers.
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Speaking to the Prospect yesterday, Staggs said she long ago gave up feeling shocked that lawmakers could rip benefits away from vulnerable people. “I stopped saying, ‘Oh my God, I can’t believe they’re doing this.’ When you understand this is what they’re planning for, it becomes less shocking and more infuriating.” That shift is animating power she can tap, she said, despite the panic and anxiety that the Republican spending cuts are causing.
“It’s especially important to know that this is actually far from over, although, certainly, the president signing it into law feels very final,” Staggs said. “But there is still a lot of work we can do, a lot of ways we can hopefully strive to influence how these horrifying cuts get implemented … personally I plan to be sand in the gears, I will be the squeaky wheel and whatever other metaphor matches being loud and cranky for as long as it takes.”
Republicans passed cuts to federal funding for Affordable Care Act programs, Medicaid, and even Medicare last week, benefit reductions so devastating to American health care that they’re expected to kick 17 million people off insurance and have already prompted the closure of at least one rural hospital. Curtis Medical Center in Curtis, Nebraska, announced last Wednesday it was closing. “The current financial environment, driven by anticipated federal budget cuts to Medicaid, has made it impossible for us to continue operating all of our services, many of which have faced significant financial challenges for years,” Troy Bruntz, president and CEO of Community Hospital, said in a press release.
FOR FAMILIES WITH MEDICALLY COMPLEX health histories, the programs lawmakers just agreed to cut are the difference between life and death, even for those with private insurance.
Staggs’s twin daughters were born at 27 weeks, and when they were finally discharged from the hospital after spending weeks in a neonatal intensive care unit, the cost came to more than $1 million, an amount that would have been impossible to pay. But the family was only on the hook for the initial $250 hospital admission charge because they qualified for Medicaid. The total sticker price would also have rendered the girls uninsurable before their first birthday, had it not been for the Affordable Care Act’s abolition of lifetime limits that insurance companies were previously allowed to impose.
Now 11 years old, Emma and Sara continue to need care, and Emma needs it 24/7. She has bilateral vocal cord paralysis, so she cannot swallow safely without aspirating into her lungs, nor can she talk. But she can still “run, jump, skip, climb,” Staggs said. “She’s social, she wants to be in the room where it happens.”
Medicaid pays for the private duty nurses and hospital-level medical equipment that allows Emma to survive, and allows Staggs to look after her other daughter, who isn’t eligible for Medicaid because her needs are developmental rather than medical. The family of four has private insurance through Staggs’s husband, Shane, but that doesn’t cover everything Emma needs, such as a gastronomy tube, through which she receives all her nutrition, hydration, and medicine. It likewise does not cover the cost of her feeding supplies and prescription medical formula, which come to around $6,000 a month.
“It’s not an exaggeration to say that every minute and every aspect of Emma’s life is happening because of her Medicaid coverage. And the other side of that coin is it all goes away in a second if she loses Medicaid,” Staggs said.
Her family has received no guidance from North Carolina or from Medicaid about what happens now that the bill has passed, and the Republican legislature has been silent other than to say, “You’re fine, don’t worry about it,” which is hard to believe. Because of cuts to provider taxes and state-directed payments, North Carolina will have far less funding to maintain its Medicaid program.
According to the state Medicaid office, 600,000 people in North Carolina stand to lose access to health care because of the cuts. One service that’s a likely target is the Community Alternatives Program for Children, or CAP/C, which allows Medicaid to pay for services like Staggs’s daughter’s nurses. Even though that service is lifesaving, it’s considered “optional,” making it one of the first programs to be cut.
SCORES OF ACTIVISTS, ADVOCATES, AND MEMBERS of organized labor went to Capitol Hill before the spending bill’s passage, hoping to convince lawmakers to reject the spending cuts that would cause even more difficulties for those whose lives are already hard enough. But they were met largely with rejection.
Alison Chandra is a pediatric nurse in Utah who credits Medicaid with the survival of her son, Ethan. Though she no longer uses the program, it was the lifeline that allowed him to undergo multiple lifesaving open-heart surgeries, including his first when he was just six days old.
Speaking to the Prospect on Ethan’s 11th birthday at a water park, Chandra, 41, described her bafflement that the Republican Party claims to be pro-life, but would do away with programs like Medicaid that promote life. She met with Utah Republican Sen. John Curtis to share her story and encourage him to reject the spending bill, but “he wouldn’t even sit at the table with my children and I,” she said. “He just stood over us and figuratively and literally talked down to us.” She tried to meet with Utah Rep. Mike Kennedy, and a staffer told her there was no way that would happen.
Union members had a similar experience. Guillermo Mendoza-Lujan, a registered nurse and SEIU 121RN member, who has worked in health care for a decade and traveled from California to D.C., said elected officials were disinterested in talking. “We had about ten minutes to talk to a staffer,” he said. “His response was, ‘I don’t really want to hear your personal stories.’” Instead the staffer asked “what policies can they do to bring in the money? They basically said, we’re going to vote yes to cuts, but if you have ideas let us know.”
Staggs and other advocates with Little Lobbyists had thought they were meeting with Sen. Thom Tillis (R-NC). But when she got to his office, after a difficult journey that had been delayed for hours, a staff member said they should have worked with his scheduler to set up a meeting, which they had, and turned them away. (Tillis did vote against the bill, specifically because of what it would do to Medicaid in North Carolina.) Next, they tried Sen. Ted Budd (R-NC). His staff members rolled their eyes at the group, which included five children in wheelchairs, and sent them packing, too.
The one bright spot of the ordeal was that Sen. Elizabeth Warren (D-MA) had heard Little Lobbyists was on the Hill and sent a staff member to invite them to stop by. They did, “and she talked for several minutes with each one of the families, she got on her knees to be at eye level with the kids. She thanked us, she hugged us, she said she’s with us,” Staggs said.
Warren also interviewed one girl in the group from North Carolina, 11-year-old Vivian, whom she then spoke about on the Senate floor.
Speaking with the Prospect yesterday, Vivian’s mom, Meredith Vaughn, described how Vivian was born 12 weeks premature and within weeks developed a severe brain bleed. She was diagnosed with cerebral palsy and hydrocephalus, and now gets around in a wheelchair. Though the family has private insurance, Medicaid pays for a host of tools and services that the insurance doesn’t cover and which make Vivian’s life possible, including physical therapy, occupational therapy, a bath seat, shower chair, diapers, medicine, and a caregiver, whose services allow Meredith and her husband to both work.
Vaughn, 44, said she is also focusing on action. Right now, that means scheduling a meeting with North Carolina Rep. Addison McDowell’s challenger in his 2026 election, Democrat Beau Blair, to meet with him “to let him know this is how worried I am, and just see what we can do from here.”
“It is frightening, but I refuse to give up,” Vaughn said. “So now it’s about, what can I do to lessen the pain? How can I reach out to other families and get them involved?”
Confronting lawmakers, supporting new candidates, strengthening community ties, and creating networks of care are all tactics that organizers told the Prospect are vital to build power now.
Refusing to back down can come in many forms, including “protest activity, rallies, marches, vigils. Storytelling so people who are voting in 2026 will understand how people will be affected. Op-eds, press conferences, town halls,” said Leslie Frane, executive vice president of Service Employees International Union. “We need to fuel the resistance movement and we need to prioritize accountability.”