Fighting for Narcolepsy Medication Coverage

Have you ever had to prove to insurance that your narcolepsy medication is worth covering? This is unfortunately a common issue that many people in our community end up having to deal with.

Putting me through the ringer

As of my writing this, I am struggling with this issue as well. The main medication that I take to treat my narcolepsy is Wakix. Recently Wakix underwent an increase in price, and my insurance has started putting my doctor and I through the ringer in order to get them to cover the price of the medication.

I’ve been on Wakix for over three years now. It has been more successful for me than any other narcolepsy drug.

Sodium oxybate, for example, caused physical and psychological side effects. While on this medication, I experienced a permanent decrease in my hearing, as well as permanent tinnitus. (I already had moderate-severe hearing loss, and I found the medication made it worse). Additionally, I experienced increased suicidal ideation and even borderline psychosis while on sodium oxybate.

By providing your email address, you are agreeing to our Privacy Policy and Terms of Use.

Getting off sodium oxybate due to the side effects wasn’t easy, because I was scared of stopping a medication that made some of my narcolepsy symptoms go away (especially sleep paralysis and nighttime hallucinations).

Extremely frustrating

Additionally, I am unable to tolerate the high doses of stimulants that are required to treat my excessive daytime sleepiness due to my postural orthostatic tachycardia syndrome. Stimulants cause an increase in tachycardia episodes for me, and it can be scary, uncomfortable, and very physically limiting. Finally, Sunosi did not address my excessive daytime sleepiness or cataplexy at all, and it made my suicidal ideation pretty severe. So Wakix it is!

Despite explaining these details to my insurance through my doctor, they still insist on getting more information on how Wakix helps me before approving coverage of the medication. This is extremely frustrating for many reasons, including the fact that I have tried every drug available for narcolepsy before getting on Wakix. Although my narcolepsy symptoms are still severe, they are better treated on Wakix than any other medication I’ve tried.

Questions the insurance company asked

Some questions they asked me include:

  • How have your cataplexy attacks changed since starting Wakix?
  • How does Wakix improve your narcolepsy symptoms?
  • Do you still experience sleep paralysis on Wakix?

I also was asked by my doctor to fill out an Epworth Sleepiness Scale. Unfortunately, my Epworth Sleepiness Score is still high. Why? Because my narcolepsy is SEVERE and PERMANENT. No drug will completely eradicate my excessive daytime sleepiness. And the anxiety that I feel at the possibility of losing coverage for a drug that has significantly improved my quality of life is absolutely debilitating.

Fighting for what we need

So, if you’ve had to fight to get your narcolepsy medication covered by your insurance, I see you. I feel your pain and your fear. It isn’t fair that we have to fight to get access to life-changing medications just to save health insurance a pretty penny. Our lives are worth more than that.

Wish me luck in my fight. And I am wishing you luck in yours!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.