A 2023 survey from KFF, a nonpartisan health policy research group, found that 58% of insured adults said they’ve experienced a problem using their health insurance, including denied claims. That same year, nearly half of Americans got a medical bill that should’ve been covered, according to The Commonwealth Fund, another nonpartisan health policy research group.
Most people don’t realize they have options after a denial, and even less know a state office exists to help, said Art Caplan, the head of the medical ethics division at NYU Grossman School of Medicine in New York City. “They give up on the first scenario,” he said.
The 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. It said they could take the case to the state insurance commission.
“They had pretty clear steps,” Maggie Pope said.
Paxton has a rare genetic condition caused by a mutation in a gene called SLC6A1. The mutation can result in childhood-onset epilepsy, developmental delays and movement disorders, according to the Children’s Hospital of Philadelphia.
Paxton’s doctor wanted him to take Ravicti, a drug that’s approved for urea cycle disorders. It’s not approved for Paxton’s condition, but early research suggests it may help reduce seizures linked to the SLC6A1 gene.
Paxton’s father, Greyson Pope, said they were afraid that without the medication, he would die from the seizures or “we would lose those things that made him himself, that we would be left with a shell of who he was.”
“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.”