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All of this information and sharing of experiences is so informative. Thank you for such a great discussion post!
My insurance will not approve Relyvrio until, and I quote, “other treatments have proven unsuccessful..” It’s hard not to laugh at the wording. My first thought was, “What evidence do they want?” We will just leave that one unasked/answered. The company sent me the first months supply – and now that my insurance has turned it down numerous times, I have to fill out a grant application in order to continue the medication.
I don’t complain about it. My insurance is covering Tofersen (which is making a huge difference), Riluzole, <b data-test=”prescription-list-2-card-0-title” style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>Baclofen for cramps.
My doctor did think that Radicava is beneficial to me.
I was interested in the average cost of ALS meds and found this on the web. I know this may vary from site to site, and insurance will vary with copays and prices.
The most common drugs used to treat ALS are riluzole (Rilutek) and edaravone (Radicava):
- Riluzole is the only FDA-approved medication for ALS. It is typically priced at around $1600 for a monthly supply.
- Edaravone is not FDA-approved for this use, but it is commonly used off-label. Edaravone typically costs around $145,000 per year.
- Nusinersen is a newer medication that was approved by the FDA in 2016. It is priced at around $125,000 for an injection.
- Nuedexta is a medication that is approved to treat ALS-related swallowing problems. It is typically priced at around $700 for a 30-day supply
Biogen has set a price for its recently approved ALS therapy Qalsody (tofersen) at <b style=”background-color: var(–bb-content-background-color); font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>$14,230 per dose. Given that 14 doses are required in the first year of treatment, that comes out to just under $200K for the first year alone, Endpoints News reported.May 2, 2023.
With all this – there is also the income lost and additional expenses to consider. Wow, maybe I was better off in the dark 🙂
Amanda