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

We were sitting together having breakfast on a Saturday morning. My friend Ann* and I have a thing for breakfast. We’ll spend hours chatting over coffee and pancakes as our kids battle with action figures or fiddle in coloring books. Her son is five years older than my daughter, but they still manage to play together really well. I’m sure it’s just out of habit. Suddenly, Ann’s son Jake* just lays his head down in his mother’s lap and falls asleep.

“Late night, huh,” I asked Ann. Normally, I would have assumed that like me, Ann hadn’t been able to get her child to fall asleep, had acquiesced to some late movie since there was no school tomorrow. “No,” she responded, “he was asleep at normal time.” I didn’t say anything.

We had both begun to notice that Jake could fall asleep at any time of day, no matter who was present or what exciting things were going on around him. Jake was always a really active child. He played hard. We attributed it to the idea that he just exerted as much energy as possible and then crashed. Recently however, Ann admitted that she had become nervous. Jake’s teachers had begun to complain that he was falling asleep during school, no matter how early he went to bed at home.

Just around the time that Ann was getting really worried about Jake’s sleep habits, her son took a topple down the stairs. There were no broken bones, just a couple bruises, but the 9-year-old began complaining about headaches. Obviously, they took him the doctor, made sure there was no concussion, but the headaches continued. Finally Ann, her husband, and Jake ended up at a neurologist’s office.

After multiple appointments and tests of every kind, the neurologist asked for Jake to participate in a sleep study. That’s when my friend figured out that her little boy had narcolepsy.

While most people don’t think of narcolepsy as affecting children, it’s symptoms normally appear any time between ages 7 and 25. In rare cases, they show up even younger. Looking back, Ann wondered how long it had been a serious problem before she realized. “He was always a great sleeper,” she explained. “I mean, when your kids are young, you feel lucky that they sleep so soundly. I remember having to give up his second nap when he started kindergarten and how hard it was for him. We just didn’t realize it was that abnormal.”

(Photo: simoly/Shutterstock)

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    • NotThumper

      That poor kid! I feel terrible for him and his parents. Hopefully something changes soon, $600/month is ridiculous!.

    • Eileen

      Ugh, that really sucks. And the worst part is, there’s no good bad guy: You can’t really blame insurance companies for refusing to cover expensive drugs that haven’t been FDA-approved. (In fact, I’m not sure how I feel about her doctor’s prescribing it – what if there are disastrous long-term side effects?) And you can’t really blame the FDA for not approving drugs without extensive tests proving that they are safe. And you can’t really blame pharmaceutical companies for not wanting to go through the expensive, lengthy tests required to get FDA approval if they don’t anticipate a huge demand for the drugs. (I mean, even if they’re not going to make a huge profit on the medication, they at least have to break even – and that will take a LOT of prescriptions) Other than a huge demonstration of customer demand for narcolepsy medication for children, I can’t think of anything that will change the situation.

    • Kim

      How horrible!! Couldn’t the physician provide the child with samples until the insurance is straightened out? Friends that work in doctor’s offices have often said how many samples get thrown out because the doctor’s don’t think to give them to their patients. I hope everythingw works out for Jake!

      • blessedwithboys

        The maker of Provigil/Nuvigil has an assistance program, but they won’t help children as it’s not FDA-approved for anyone under 18. :(

    • Julie Flygare, JD

      Thank you for this important article. I’m a narcolepsy advocate and spokesperson. Please feel free to contact me, I’d be happy to put this mother in touch with other families who have navigated this system.

      The majority of pediatric use of medications is “off-label” (meaning it has not been FDA approved specifically for pediatric use, like in Jake’s case). This is because experimental testing on children and infants carries extra ethical problems of gaining informed consent from children. Pharmaceutical studies carry risks of physical or psychological harm that may be difficult to quantify. Ethically, the obligation to act in a child’s best interests entails protecting children from both the potential risks of research and the harms produced by the use of inadequately tested drugs, as well as respecting their autonomy. See http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1125018/

      Similarly, drug testing on the elderly and pregnant women in early clinical trials is not common because of the higher risks for these populations. Therefore, off-label drug use (use of a drug without a specific FDA approval for that populations) is imperative to serve patients who are generally not represented in clinical trials, such as children, pregnant women and the elderly.

      The children who are truly “experimented” on are often those that most need the drug. This is the consequence of our nation’s ethical choice not to conduct widespread experimentation on children without their informed consent. Follow-up studies can be conducted, but this is the exception and not the norm.

      For an insurance company to deny this claim solely on the fact that the drug is not FDA approved for pediatric use is unethical. Cheers, Julie

    • Kimberly

      My husband suffered from a condition similar to narcolepsy after his brain surgery, and even with an adult, we had a terrible time getting our insurance to cover Provigil, even after we had exhausted all the other potential options (the ADD/ADHD drugs). Nothing but the Provigil allowed him to stay awake to work or do anything else. While I have no help to offer, I am very sympathetic to your problem.

    • blessedwithboys

      Tried to post yesterday but I dont see it here…

      Anyway, whoever allowed “narcotic” to remain in the text of this article needs to open a dictionary! A narcotic is a pain reliever/euphoria inducer, such as morphine. It is NOT synonomous with “prescription medication”, and would NEVER be prescribed to keep a narcoleptic awake. Poor research, or maybe none at all. :(

      ~mama of a child with narcolepsy, who took non-narcotic provigil and then proceeded to take a nap :)

    • just saying

      Not to suggest illicit behavior, but I would like to point out that this drug can be purchased internationally for around $50/month. Were one inclined to illegally import it.

    • reader

      Really interesting article, there really should be more research done on the effects of medication on children so that those who really need it can get the help they need. One thing I did notice in the article however was the mention of narcotics in treating ADD and sometimes narcolepsy. Narcotics are pain relieving medications that actually usually have drowsiness as a possible side effect. Many ADD medications are amphetamine based because it’s a stimulant and in the case of ADD it overstimulates the brain causing the system to react and calm itself down, where with narcolepsy the hope is that it would just help stimulate the person. Either way stimulants can also be addictive.

    • http://www.facebook.com/Bobbie4Florida Bobbie Bentley-Stiles

      As an adult that has fought with falling asleep for YEARS I have finally been prescribed something that works – Nuvigil and the insurance company is fighting me. I even fall asleep talking to my best friend on the phone and she had to call my cell phone to wake me up.

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