Insurance denied an $800,000 drug twice. A state-run outside panel helped a North Carolina teen get it.
A 2023 survey by KFF, a nonpartisan health policy research group, found that 58% of insured adults reported experiencing problems using their health insurance, including denied claims. That same year, nearly half of Americans received a medical bill that should have been covered, according to the Commonwealth Fund, another nonpartisan health policy research group.
Most people don’t realize they have options after a denial, much less know there is a state office to help them, said Art Caplan, chief of the division of medical ethics at NYU Grossman School of Medicine in New York. “They are abandoning the first scenario,” he said.
Popes realized they could request an external review when they noticed a line at the bottom of the second denial letter they received for Paxton’s drug. He said they could take the matter to the state insurance commission.
“They had pretty clear steps,” Maggie Pope said.
Paxton suffers from a rare genetic disorder caused by a mutation in a gene called SLC6A1. The mutation can lead to childhood epilepsy, developmental delays and movement disorders, according to Children’s Hospital of Philadelphia.
Paxton’s doctor wanted him to take Ravicti, a medication approved for urea cycle disorders. It is not approved for Paxton’s disease, but early research suggests it may help reduce seizures linked to the SLC6A1 gene.
Paxton’s father, Greyson Pope, said they feared that without the medication he would die from his seizures or that “we would lose the things that made him, and be left with a shell of who he was.”
“Every time I saw a crisis, a little piece of my heart would break,” Maggie Pope said. “It’s debilitating to see someone you love slip in and out of cognition and reality. … There was definitely some anger from time to time, where you were just frustrated that you couldn’t help them.”
