Just curious, does anyone's insurance not cover Riluzole?

DW96

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Just seems strange to me, my insurance always pays for all my meds prescribed, even the expensive Radicava, but doesn't ever cover Riluzole...should I try to look into why? I've been taking it since last July.
Didn't know if anyone else has seen this with theirs. (UnitedHealthcare)
 

Nikki J

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I am surprised. This is not a medicare plan but something else? Riluzole is subject to my deductible on my medicare plan but it is on formulary. Before I had medicare it was not only covered it was tier one lowest copay
 

lgelb

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I can't imagine a UHC plan, whether Medicare or not, that doesn't cover a generic oral med that is only in class. You can find it in miscellaneous CNS agents on the formulary (formularies are all available on the UHC site after you select your plan).

However, UHC does classify it in some plans as an SP drug, meaning that not every pharmacy can dispense it to you and have it covered. Just check the pharmacies in your area for who can, usually the national chains, or sign up for mail order.
 

KenM

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I was covered by United Health Care until January of this year, and they covered Riluzole since my diagnosis, for 4 years.
 

ph115

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Use goodRX. Much less expensive.
 

DW96

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I do use GoodRx because of that. It is weird because it's not costly like Nuedexta and Radicava and my insurance covers those
 

Ann Marie

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Nope, wouldnt cover us. I went thru Good RX website to be able to afford it.
 

Lynn Gross

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We pay $650 a month for Riluzole. Waiting to hear about Radicava cost.
 

Nikki J

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Look at the good rx site. It can be tricky if you have medicare as some pharmacies won’t let you use it but I am guessing you don’t If you do still try and next year obviously you would pick a better part d. Even my part d which isn’t great covers it
 

ph115

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$86 for 3 months GoodRX..
 

KimT

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CVS let me use it for a drug and I have Medicare and a supplement. It was for a PPI (Aciphex) which doesn't seem to be covered on any plan. I guess there are too many PPIs but it's the only one that doesn't make me sick.

I ended up getting it at a Canadian pharmacy for less than GoodRx.

My doctor told me about another company called Cost Plus. They mark up drugs by 15% but they don't have a lot of the common ones. They do take requests.
 

Nikki J

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Costplus had neither riluzole nor nuedexta when I looked. While you can request I suspect their model wants high volume to work which these wouldn’t be
 
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