A KFF 2023 Polla nonpartisan health policy research group, found that 58% of insured adults said they had encountered problems using health insurance, including claims being denied. That same year, nearly half of Americans received medical bills that needed to be paid, according to the data. Commonwealth Fundanother nonpartisan health policy research group.
Most people don't realize they have options after a denial, and even fewer know there's a government agency that can help, said Art Kaplan, director of medical ethics at New York University Grossman School of Medicine in New York. “They are abandoning the first scenario,” he said.
The dads 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 may refer the matter to the State Insurance Commission.
“They had pretty clear steps,” Maggie Pope said.
Paxton has a rare genetic disease caused by a mutation in the SLC6A1 gene. The mutation can lead to childhood epilepsy, developmental delays and movement disorders. Children's Hospital of Philadelphia.
Paxton's doctor wanted him to take Ravicti, a drug approved to treat urea cycle disorders. It is not approved to treat Paxton's disease, but early research suggests it may help reduce seizures associated with the SLC6A1 gene.
Paxton's father, Grayson Pope, said they feared that without medication he would die from seizures or “we would lose what made him himself, that we would be left with just a shell of who he was.”
“Every time I saw a seizure, a little piece of my heart broke,” Maggie Pope said. “It's exhausting watching someone you love go in and out of consciousness and reality… There was definitely some anger at times where you were just upset that we couldn't help them.”
