My Insurance Refuses To Pay For My Sonâ€™s $600/Month Narcolepsy Medication
The diagnosis, while a surprising one, brought a lot of light to other issues that Jake had been having. Problems paying attention at school, problems with behavior, they made more sense once the family understood Jake’s disorder.
“My doctor described it like this and it made a lot of sense to me,” Ann explained. “It’s like when you’re sitting in a meeting for hours and hours. A boring meeting. If you start to get drowsy, what do you do? You get up and move around. You have a harder time focusing on the work you’re supposed to be doing. You doodle or let your mind wonder. Jake has been walking through life like that all the time. He feels like that constantly. And it makes it hard for him to focus, especially at school.” Once they spoke to their teacher about Jake’s issue, they all started working on a plan to help him adjust and find the right balance. They talked to Jake about taking naps when he really needed them. They created a very scheduled routine to help him cope. And, their doctor prescribed Jake with a medicine called Nuvigil, which helped him stay awake throughout the day.
At first, the family was given samples of the product while the doctor sought approval from Ann’s insurance for the medication. “It was amazing,” Ann told me. “The first day he was on this medicine, his teacher told me that she could see the difference. It was easier for him to read. He spoke more clearly. At home, he was just a different kid.”
They knew that no drug worked miracles and that they all had their side effects. Ann researched her new wonder-drug. She set up a schedule to have her son’s heart monitored every three months, because there’s a small but scary chance that the stimulant will do heart damage. “That’s terrifying,” she told me. “Of course, that’s scary. There’s so much that’s scary. But Jake wouldn’t make it through school without some type of help. He wouldn’t be able to focus long enough to learn anything.”
Then, Ann and her husband encountered an issue they hadn’t even considered. Their insurance refused to cover the $600/month prescription because Nuvigil is not FDA-approved to treat children. There’s just one little problem with that. There is no FDA-approved drug to treat narcolepsy for children. Nothing at all.
I spoke to neurologist, Dr. Erin Stevens, about this lack of medication for young kids with this condition. “Well, there aren’t a whole lot of options for narcolepsy in general. There are only a couple options for people who have narcolepsy, and it’s a really under-diagnosed issue,” she explained. “Nuvigil, in particular, was just approved by the FDA in 2007. And the only studies with children had a substantial issue with rashes. Once they found that, I’m assuming they just scrapped the testing for kids and only worried about getting it certified for adults. But since there’s nothing else as effective, doctors just prescribe it anyways and families have to decide if they can pay for it out of pocket. Some can, some can’t.”