Narcolepsy and Medicare

By trula

2 min read

Dealing with narcolepsy is difficult enough, but being a senior citizen with narcolepsy, or any rare disease, is unbelievable!

Finding medication that might work

I’ve taken amphetamines for many years because they were the only thing I found that would help. I’ve learned that my body became so used to them that they don’t do the job anymore. My neurologist has tried many other things to no avail. I heard about Wakix from someone taking it and he said that it really helped him. He gets it free from Wakix4u. I called them...

Only to be told I don't qualify

I am on Medicare so I don’t qualify. My insurance wanted nearly $1500.00 every month which is more than my social security check. I called every possible resource and, no one except NORD will help if you are on Medicare. NORD put me on a waiting list which I am still on 8 months later. I call and check thinking that maybe they forgot about me but, no…. Still waiting!

The reality of being on Medicare

Why is it that seniors are punished for being on Medicare? Plus, Medicare is our only option unless, of course, we are a member of Congress. Then I wonder why some liberals want everyone on Medicare! Why? So that no one can get needed medication? My insurance even tried to tell me a mammogram wasn’t covered! Yes, I fought that and won, thank God! So, what do I do with myself? I force myself to get up and get dressed every morning. I try to keep my house clean although that is if my naps aren’t too long. I eat a meal and, another nap! I’ve gained far too much weight and I’m still waiting for a drug that I don’t even know will work!

I have always believed that Medicare was insurance to help seniors. Sometimes I wish I could qualify for MediCal, at least then I could try the medication! So, all I can suggest for those of you who are young is, DON’T GET OLD!!! I want to live, not sleep and sleep and sleep. Oh for the strength to go for a walk! Sorry, I’m not giving you hope but, this is reality! Reality for seniors is not a bed of roses for sure!

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trula Member
Thank you Lori, I have never heard of PAN but will check them.. NORD has been helping but my specialty pharmacy has not turned in my invoices this entire year. They claim they sent a paper copy but NORD has never received any. I don't understand why they won't send them electronically. I have to stop taking Wakix because I don't know how much of my endowment has been used. This is a great insurance co. but the pharmacy isn't working. I hope it goes far better with others. The IRA is good but doesn't begin in 2025... Thank you for responding, I'm all over this!
1. Lori.Foster Community Admin
 Hi <inline-mention username="trula" user-id="4122462"/>. I am glad NORD is at least paying something, but what a mess. Could you ask the pharmacy for copies, scan them and submit them via email yourself or is that not allowed? Please know we're here for you whether you need support or simply a safe place to vent. I hope it all works out before 2025. 😀 Wishing you the very best. - Lori (Team Member)
Lori.Foster Community Admin
Hi <inline-mention username="trula" user-id="4122462"/>. I was scrolling through stories today and saw yours. My apologies that no one responded sooner. My heart aches for you. Things are changing with the passage of the Inflation Reduction Act in the fall of 2022. The law allows Medicare to begin negotiating with drug companies, but the changes will be phased in over several years. So I am not sure how much that will help you. Have you tried reaching out to the PAN Foundation? They might be able to help. Here is a link: <a href='https://www.panfoundation.org/' target='_blank' rel='noopener noreferrer ugc'>https://www.panfoundation.org/</a>. I don't see anything now for narcolepsy, but that can change from week to week. So it might be worth checking repeatedly. You can also try working with a Medicare specialist to see whether there is select a different supplemental prescription plan that will cover Wakix. Please let me know how you are doing, if you don't mind. I will be thinking of you. - Lori (Team Member)