How do I get Relyvrio for my PALS

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Lydialadwig

New member
Joined
Jun 2, 2023
Messages
1
Reason
CALS
Diagnosis
03/2023
Country
US
State
FL
City
St Petersburg
My husband was diagnosed with ALS 3 months ago. Lower limb onset. We have Aetna Medicare. We was approved for Riluzole and Radicava, and he has been taking them without any side effects that we can tell. However, AETNA has twice now denied us coverage for Relyvrio.
Is there some other way we can get assistance to get Relyvrio?
 
Post in thread 'Relyvrio' Relyvrio

Above link is part of a very long thread about Relyvrio. It lists our copay.
With our plan we have no annual copay cap, so the sky is the limit.
We are Aetna Medicare Advantage, but it is a specific retirement plan with my husband's firm.
We did get the PA from the clinic submitted. We were not denied, but my husband was only on Riluzole. Perhaps you are being denied due to Radicava? Tom was on Relyvrio for about 5 weeks. He could not tolerate it due to relentless diarrhea. He discontinued.

If you search there are many discussions about insurance denials and the appeal process.
 
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I found my notes on Relyvrio approval. Our RX plan under AetnaMedicareAdvantage is Silver Script.
I wrote down that SS would pay 4K and we would pay 25 pct. Our cost came to $1688.07 per month.
However...at that time Healthwell had funds to assist with prescriptions. We received a grant from Healthwell. I dont know if they have funds now. I need to call them to return the balance of our grant.
My posts on the Relyvrio thread fall into the TMI CATEGORY. But many of us were very hopeful about this drug helping our PALS.
 
You might want to talk to Synapticure.
 
Very sorry to hear about your husband, Lydia. I agree that the issue may be Radicava, but you should be able to request a reason for denial if the denial notice was not specific. No harm in reaching to Synapticure if he meets Aetna policy criteria otherwise, though that consultation will be an out of network expense.

Kathy, I realize Tom d/c'd Relyvrio, but for others and in case it comes up -- All Part D plans and Medicare Advantage (Part C) plans have a catastrophic drug benefit where the payment drops to 5% of cost once you hit the $7,400 rx OOP limit (for 2023). There may also be a lesser limit for brand name drugs. Catastrophic coverage does not apply to Part B drugs, which would be subject to your Part B OOP limit.

The 5% copay, btw, will be removed in 2024.
 
Thanks Laurie. Lgelb. Your so knowledgeable. :)
 
Best of luck… my insurance approved Relyvrio as long as I was willing to pay @72k a year in copay! Given Europe has yet to approve the drug, I’m opting to pay @50 bucks a month for TUDCA instead!
 
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