Relyvrio

[Mary2]

This thread has me wondering why my husband was never put on Radicava. Can you take Radicava and Riluzole together? I can't find anything that would indicate why my husband couldn't be on Radicava.
I have asked why through the portal. Does anyone know a reason why he isn't on it. And we haven't heard from our ALS team about Relyvrio but I have asked through the portal now and we will call Amylyx on Monday.

 

[Mary2]

I am feeling pretty upset. Do you think he qualified for Radicava and they used age discrimination to not give it to him. My husband was talking about writing a book last night. Who is to judge anyone by age.

 

[Nikki J]

You can take all the R drugs together. For radicava lot of insurance companies used the criteria for the trial to qualify coverage. They were IIRC within 2 years of symptom onset, svr/fvc 50%, at least 2 on every frs measure. Basically it was early and disease but fairly fast progressing the benefit it I think your husband was a delayed dx? Tht might be why but ask. I never wanted to get the iv form and when it became available in ors my neurologist did bring it up but thought it would be a tough approval and I didn’t think the co-pay was worth it even if I got approved This is for my situation your mileage may vary

 

[Mary2]

Thank you Nikki...What is IRRC?

 

[Nikki J]

IIRC IF i recall correctly
fixed it

 

[Tomswife]

• Salt (sodium) retention. RELYVRIO contains a high amount of salt. For people who are sensitive to salt intake, such as people with heart failure, high blood pressure, or kidney problems, limit the amount of salt you eat and drink. Talk to your doctor about the total amount of daily salt that is right for you. Your doctor will monitor you for signs and symptoms of salt retention during your treatment with RELYVRIO.

 

[Tomswife]

It is my understanding from speaking with the Amylyx care team today that if you have commercial rx insurance, there will be (should be) no copay. Since PALS is Aetna Medicare Advantage we will have a copay. I am waiting for more info from CVS on our copay.
However, the Amylyx team member did provide information on financial assistance.

She sent me these resources. I dont know more at this time. Below is from amylyx.

Should you need financial assistance please refer to the following websites: [links removed due to donation buttons]

The Assistance Fund

Healthwell Foundation

There is also: Medicare Extra Help line: 800-772-1213

 

[Landis02]

My PALS has Medicare through United Healthcare. Our copay for Relyvrio is $55.

 

[Nikki J]

I believe the assistance fund is closed for ALS. There might be a wait list.

medicare extra help is dependent on income and makes no allowance for the cost of a drug to qualify In 2022, the annual income limit for Extra Help for an individual is $20,625. For a married couple living together, the limit is $27,705.

 

[lisa g]

I ended up going through the Healthwell Foundation for help with the Radicava ORS prescription. I didn't think we would qualify because of our income. We did it over the phone it took about 15 minutes. They only asked for my SS# for verification. They came back and gave me a $15,000 grant for 1 year. You can combine other prescriptions (Riluzole, Nuedexta, Radicava ORS etc.) as long as they're used for ALS. They close and open the funds periodically due to funds available at the time.

 

[Tomswife]

Hi. I will spare you the details of my many many phone calls to Amylyx, Cvs specialty pharmacy and Aetna Medicare Advantage.
We are being quoted $1688.07 for one month of Relyvrio. (I dont want to give them the seven cents!)
Is anyone else on Aetna Medicare Advantage?

 

[Tomswife]

Tom and I have never been this sick where we needed to understand how our health plan works. Some of the confusion is due to our ignorance, and some is Aetna for having phone reps who dont give correct info.
I just spoke with our Amylyx care team rep. He was very helpful in explaining facts I should have known all along.
- cvs is bugging us to ship for the $1688.07 because aetna will "cover" month one with no Prior Auth.
- month two needs prior auth (i did msg clinic for PA)
- the price is partly determined by our annual max out of pocket and how much of our deductible has been met. (No one at Aetna mentioned this )
- non formulary drugs will not be online. No recourse but to call Aetna and Cvs specialty.

 

[Nikki J]

So you will eventually hit a deductible and then have no or minimal copay? Of course it resets January 1 if it is like any other plan I have had. Can you wait ?

 

[Hal]

I was told yesterday that Relyrio is in short supply amylyx is still working to gear up their production which is one of the reasons behind approval delays

 

[Tomswife]

Sorry to get into the land of TMI with everyone.
Before ALS we just filled RX kind of clueless and paid very little. We pay abour $100 per month for Riluzole..
We have zero deductible.
And no max out of pocket.
And 20% cost/copay for specialty/non formulary. So I think that is where the 1688.07 is coming from. But I dont know how they arrived at that number. I did spend hours on this talking to Silver Script/CVS Caremark to understand how rx for drugs get paid - process, approvals, payments. Etc.