My Insurance Refuses To Pay For My Son’s $600/Month Narcolepsy Medication

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“It would be easy to blame the insurance,” Ann told me, much more rational and fair than I am. “Sometimes, I get angry with them. Mostly because these substitute narcotics they agree to cover aren’t approved for children either. They’re just cheaper. But really, it’s not just their fault. Why isn’t there a drug available to treat to kids? I guess there isn’t enough demand for it to make money?”

Of course, pharmaceutical companies are businesses first and healthcare treatment second. But given that one in 3,000 people is estimated to have narcolepsy, and those patients begin to see symptoms starting at age 7, it seems like there would be enough people to make the medicine worthwhile.

In fact, when I think about the substitutes suggested and the way the illness manifested for Jake, it’s possible that there are a lot of children currently on ADD medicine that might benefit from further examination. Dr. Stevens admits, “They can look the same to someone who is eager to medicate instead of find the root of the problem. Lack of focus, bouncing around a lot, those are pretty classic ADD symptoms,” she agrees. So could some of those children have narcolepsy? “Of course it’s possible. Narcolepsy isn’t ever going to be as common as ADD and ADHD. But it is possible that without the sleep studies, you would diagnose narcolepsy as ADD. Hopefully doctors will be looking for other signs, like lots of napping and sleeping very soundly. It’s not always as dramatic as just dropping over in the middle of a sentence, like some people assume,” she adds.

But that sudden collapse is a possibility, and a concern for parents. “Of course, without the medicine I worry that Jake will be riding his bike around the neighborhood and just doze off. Those episodes can get worse the older you get,” Ann confides. The idea of your child just falling asleep while swimming or doing any physical activity would definitely be scary.

Right now, Ann is writing more letters to her insurance. “The doctor isn’t allowed to contact them, or the teachers,” she tells me. “It has to be me. I don’t know if they just hope we’ll give up, but I have another letter in. I’m waiting for a response.” Of course, all that waiting is more time that Jake either has to survive without medicine or Ann and her husband have to budget for another $600. “It’s a lot of money, but if we have to pay it, we will,” Ann says. Thankfully, she and her husband are in a position where that expenditure is possible. Not every family would be able to rearrange enough of the family budget to account for over $7000 a year in prescription drug costs.

For the families that can’t? “They normally stick with the ADD medicine. The problem is that it takes a lot of it. And it’s more addictive if not being used to actually treat ADD,” Dr. Stevens tells me. Those narcotics can join the list of addictive medications now being used to treat children, like Oxycontin.

For now, Jake is lucky. He has parents who can afford his Nuvigil, even if their insurance refuses to cover it. Other kids aren’t so fortunate. And we should remember that every child with narcolepsy is being treated with medication that is not approved by the FDA, because for these kids, there’s no such option.

(Photo: Steve Snowden/Shutterstock)

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