Imagine a family's desperate fight against relentless seizures, only to uncover a hidden path through bureaucracy that could save their child's life—and spark a heated debate on healthcare fairness.
December 10, 2025, at 7:17 PM EST
When Paxton Pope's insurance company rejected coverage for a medication costing close to $800,000 annually—something his doctor deemed essential to drastically cut down on his frequent seizures—the Pope family from Davidson, North Carolina, feared a devastating blow to his health. But here's where it gets controversial: a little-known section of the Affordable Care Act opened the door to an independent state panel review, ultimately flipping the insurer's decision on its head.
In just a few short months after gaining access to the drug, Paxton's world has started to brighten, his mother Maggie Pope shared. What was once up to 12 seizures every hour has dropped to roughly eight per day. He's reclaiming abilities he was beginning to lose, such as engaging in real conversations and sharing stories about his schoolbooks. For the first time ever, he's joining his school's flag football team—running plays instead of battling pain.
"I was just over the moon," Maggie Pope recounted. "I looked over at him, and he was just smiling. I said, 'Paxton, did you know you were having fewer seizures?' And he just kind of shook his head, 'Yeah.'"
The reversal came courtesy of the North Carolina Department of Insurance, a state body that monitors health insurers and assists patients in contesting rejected claims. And this is the part most people miss: every state operates some version of an insurance department or commission, though the specific programs and funding can differ significantly. These agencies often provide guidance for an extra layer beyond an insurer's internal appeals—the external review process—which many consumers aren't aware of.
If you're grappling with claims that feel inflated, coverage refusals, or denials related to health, home, or auto services, reach out to us at Costofdenial@nbcuni.com for support.
Under federal guidelines, when a physician declares a treatment medically necessary but the insurer still says no, opting for an external review routes the matter to a neutral panel. They assign it to a qualified doctor who examines the details and delivers a final, enforceable ruling.
"They're a well-kept secret," remarked Michele Johnson, executive director of the Tennessee Justice Center, a nonprofit law firm dedicated to challenging medical bills. "I think it's definitely worth trying, and get doctors to help fight for you, because, of course, the doctor's opinion is going to make a huge difference."
'My heart would break'
Tens of millions of Americans encounter claim denials annually, adding to the frustration of navigating a complex healthcare system.
A 2023 study by KFF, an impartial health policy research organization, revealed that 58% of insured adults reported issues with their health insurance, such as denied claims. In that same year, nearly half of Americans received a medical bill for services that should've been covered, according to The Commonwealth Fund, another nonpartisan group focused on health policy.
Few realize they have recourse after a denial, and even fewer are clued in about state offices that can assist, noted Art Caplan, director of the medical ethics division at NYU Grossman School of Medicine in New York City. "They give up on the first scenario," he explained.
The Popes discovered the external review option by spotting a small note at the bottom of their second denial letter, which mentioned appealing to the state insurance commission.
"They had pretty clear steps," Maggie Pope said.
Paxton suffers from a rare genetic disorder stemming from a mutation in the SLC6A1 gene. For beginners, think of this as a glitch in the body's instruction manual that can lead to epilepsy starting in childhood, delays in development, and problems with movement, as described by the Children's Hospital of Philadelphia. Paxton's physician recommended Ravicti, a medication typically used for urea cycle disorders—a group of rare conditions where the body struggles to break down proteins properly. While not officially approved for Paxton's specific issue, emerging studies hint it might ease seizures tied to the SLC6A1 gene, offering hope where standard treatments fall short.
Paxton's father, Greyson Pope, expressed deep fears that without the drug, seizures could prove fatal or strip away the essence of who Paxton is, leaving behind a mere shadow.
"Every time I saw a seizure, a little piece of my heart would break," Maggie Pope said. "It's debilitating to watch someone you love come in and out of cognition and reality. … There was definitely some anger every once in a while, where you just get frustrated that we couldn't help him."
Far from ideal
Requesting an external review offered no assurances of success for the Popes.
North Carolina's program for handling denied claims, dubbed Smart NC, has approved 153 out of 282 requests this year through November—a success rate of about 53%, according to Barry Smith, deputy director of communications at the North Carolina Department of Insurance.
Similar trends appear in other states: Kansas has reversed 54% of cases since 2018; California, 51% over the past decade; Colorado, 44% last year; and South Carolina, 43% in 2024. Some states report lower figures, like Washington's 25% in 2024 and West Virginia's 17% across five years.
North Carolina Insurance Commissioner Mike Causey highlighted that the agency processes thousands of cases yearly, addressing not just external reviews but also surprise bills, pre-authorization hurdles, and even Medicare scams.
"Our job is to enforce laws and to regulate insurance and to make sure that the companies are fair," Causey stated.
Yet, Johnson from the Tennessee Justice Center pointed out that the system isn't perfect, directing her criticism at the wider healthcare landscape rather than the state offices themselves. Many families with severe medical challenges can't afford the delay of weeks or months for an appeal, and the paperwork feels insurmountable while caring for an ill child. "If you're a regular person trying to navigate this process, it's often really overwhelming and challenging," she observed.
For the Popes, the journey involved a preliminary application to confirm eligibility, submitting records of the two denials and Paxton's seizure tests.
Paxton's doctor submitted the initial prescription request on April 17. By May 20, the family faced two rejections from insurance. In June, Maggie Pope filed the documents for the state appeal. On August 5, a letter arrived announcing the overturn.
"I was thankful for this whole process," Maggie Pope said. "It was really only a five-month window from the time we submitted the prescription to the time we got it."
Greyson Pope hopes to spread the word about resources like the North Carolina Department of Insurance.
"Just because you got one no or even two noes, it doesn't have to be the end of the story," he urged.
Berkeley Lovelace Jr. serves as a health and medical reporter for NBC News, focusing on the Food and Drug Administration, Covid vaccines, drug pricing, and healthcare. He previously reported on biotech and pharmaceuticals for CNBC.
Patrick Martin works as a producer in the NBC News Health & Medical Unit.
Vicky is NBC News' chief consumer investigative correspondent, host of NBCNews Daily, and a New York Times bestselling author of the memoir "Boat Baby." She reports for Today, Nightly News with Tom Llamas, and NBCNews Now. A valedictorian graduate of the University of San Francisco, Vicky resides in New York with her husband and three daughters.
But here's the twist that might divide opinions: Is this external review system truly a safeguard for patients, or does it highlight how broken our insurance model is, where families must battle for what's medically necessary? And what if these state panels are underfunded or inconsistent—should they be nationalized for fairness? We'd love to hear your thoughts: Have you or someone you know fought a similar insurance denial? Do you believe these provisions are enough, or is it time for bigger reforms? Share your stories and views in the comments below!
