My daughter has idiopathic hypersomnia. The treatment for IH is the same as for narcolepsy. CVS is denying the claim for the prescription that was deemed medically necessary last year when they initially denied the claim. I was told it would stay on file. The doctors’ office is basically done dealing with the pharmacy and insurance after the latest denial and have not filed an appeal. I have to file the appeal, which is fine, and after speaking with CVS pharmacy benefits, I understand why the doc is done.

CVS is denying the claim because the medication is only approved for three conditions- narcolepsy, OSA, and shift work sleep disorders. They won’t even fill it. I explained that IH and narcolepsy are very similar and the medication my daughter takes is listed by Mayo, Cleveland, and virtually every reputable provider as the first choice in treatment. They repeated that she didn’t have the three conditions listed and was not eligible for the medication. I asked what meds were approved for IH. The first option she listed was the brand name for the generic drug that my daughter was being prescribed and they were denying. Additionally, I explained that the 3 medications mentioned were all the same as the denied drug and the last option was rohypnol, which cannot be filled at a pharmacy.

CVS told me to submit an appeal, but submitting an appeal can still mean it is denied. Or we can repeat the testing and hope that she has one more episode of REM in one of the sleep stages so that she can be diagnosed with narcolepsy instead of IH. The algorithm is denying conditions and medications that were nearly identical. I assumed that speaking to a person meant critical thinking skills would make it obvious how ridiculous the whole thing was. Nope. They still didn’t understand.

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CVS told me that the doctor should just file the appeal. I explained that they last year, all of the information was on file, and appealing a medically necessary condition every year was not part of their duty once they have already proven the medication is medically necessary, it is alifelong incurable condition, that requires no additional testing. CVS wanted to know how they were supposed to know my daughter still needed the medication. I told her that the prescription is how they know she still needs it.

I think pharmacy benefits have gotten so used to just denying everything and using it as a means of security. My insurance was not very happy to hear that CVS suggested solution was to repeat an expensive round of testing to justify paying for a generic drug that is standard in the treatment of a diagnosed condition. I got a Good RX coupon and since it is for Meijer, at least I am not giving CVS any more money than I already am. Sleep disorders tend to run in families. I could not figure out why my last refill for the same medication was only 15 days. It has something to do with the number of pills they will cover in a 30 day time period. I have been trying to stretch my 15 day prescription to 30 days, my daughter hasn’t had hers for a week. We are hella sleepy in this house right now. I just don’t understand how insurance is able to dictate the care that we receive to this extent. We see the doctor every 6 months so that the prescription can be refilled and they can prove to the feds that they aren’t writing fraudulent prescriptions. Can I file a complaint with someone in my state or federally?

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