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

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Ann’s insurance suggested that she try two other medications for her son. Both were less expensive and more widely available than Nuvigil, though neither was approved for children either. The problem was that they weren’t technically narcolepsy medications. These drugs were narcotics used with kids who have ADD.

“I wasn’t happy about it, because my son doesn’t have ADD. And these narcotics are addictive. But the insurance said we had to try them for three months each, so that’s what we did,” Ann told me.

As a person who saw Ann and Jake on a regular basis, I can personally attest to the way that the first drug affected Jake. He lost his appetite pretty substantially. A little boy who was already extremely skinny, he lost an additional five pounds. That means a lot to a child who was already small. “Our doctor decided that the medicine wasn’t healthy for Jake. She was afraid he would miss his next growth spurt at the rate he was going,” Ann admitted.

After three months of the first, they moved on to option number two. ‘This was the worst,” my friend admitted. “Jake had these horrible nightmares. They were like hallucinations. He thought the devil was coming to get him. It was awful. And then he started to develop these splitting headaches. He would wake up in the morning and tell me that it felt like someone was driving a nail straight into his forehead.” Those were a long three months for my friend’s family. They struggled to help Jake cope with the medicine. But the dreams and the headaches made it almost as difficult for Jake to get restful sleep.

It was time to go back to the insurance agency. They applied again to get Nuvigil covered under their insurance. Again, they were denied. “The drug is not approved to treat children,” they were told.

Ann tried to do everything she could. She contacted the distributor of the medicine to see if they had discounts available. She signed Jake up, just in case the company ever does decide to run a study on children again. She spoke to her doctor about what else could be done. And then, she prepared to cough up another $600 for 30 pills that help her son make it through the school day.

(Photo: Julija Sapic/Shutterstock)

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