Relyvrio

[blakej]

I may start taking the new approved ALS drug Relyvrio. Wondering if there is anyone out there who has been taking it for at least a couple months willing to share their experience thus far.

 

[Marieb425]

Hi there - my husband has been taking it for 3 weeks (I know it’s not a couple months but I saw you didn’t get any answers yet). He hasn’t had any side effects so far - but he was taking Tudca daily before starting the Relyvrio. He also is on Riluzole and Radicava ORS.

 

[Landis02]

My husband has been on it for 2 weeks with no side effects.

 

[Buglaw]

How long has the insurance approval been taking for this? I’m at 5 or so weeks at this point. I’ve been harassing them for status updates to no avail.

I have bcbs in case anyone else does and has gotten approved.

 

[lisa g]

I was told that it could take up to 45 days. I started the process on 10/7 and was denied on 11/16. I was told that the denial was because I'm on Riluzole which makes no sense. After the denial with a waiting period of 15 days the Amylyx care team informed me that they will provide the drug free of charge and not process it through insurance while the appeal is done. I'm scheduled for a delivery of the drug this Friday.
I went through the same thing with Radicava ORS. After 3 months I was finally approved for the drug. I don't understand why we have to jump through hoops to get the medication. Especially since there are only 3 drugs approved.

 

[Marieb425]

We had more trouble with Radicava ORS vs. the Relyvrio. Cigna denied Radicava (with no grounds to deny - he met all the eligibility and the denial letter was signed by someone who specializes in sleep disorders 🙄). We filed an immediate claim with the state insurance commissioner who told Cigna they had 15 days to reply to us. Then, Cigna requested a peer to peer with his doctor and approved the Radicava. With the Relyvrio - it shipped out to us and Accredo said we needed to pay a balance of $1600 even though we had a co pay approval letter with Amylyx. I called the Amylyx team and they sorted it out and they confirmed we won’t have a copay. If BCBS is holding the process up I would encourage you to file a complaint with the insurance commissioner office (or whatever it’s called in your state). Good luck!

 

[Marieb425]

Lisa - I’m so sorry and I’m so glad Amylyx will be providing you with the medicine free of charge. It’s infuriating how the US insurance system is and how they treat terminally ill patients and their families.

 

[lisa g]

I agree it's a waiting game of who will give up first. My prescription plan is underwritten through Cigna. My husband and I won't back down to them. From what I understand is that it's not Cigna that denys the claim it's Caremark Speciality Pharmacy that Cigna has delegated the task of approving or disapproving. I hope they never find themselves in the position of having a terminal disease and have to fight for their meds.

 

[Buglaw]

Lisa, I’m sorry you are going through this. It’s so dumb that it happened with Relyvrio where the studies showed a benefit for everyone. It’s not like it had the limited benefit seen for Radicava.

 

[Tomswife]

Our order for Relyvrio was submitted by nypresby columbia on nov 17, the day of our Clinic visit. We have not heard anything, and I just checked the portal.

 

[lisa g]

Marie425, how did you find out the physician that actually denied the prescription? My denial letter was a basic form letter. I don't think you had an issue pushing the Relyvrio through correct?

On the Radicava ORS they told me that my ALS/FRS score didn't qualify. I knew someone with a score in the low teens that was approved. At the time there was a change of neurologists at my clinic. The new neurologist really rated me low on my score. I argued with him over it. Yes there are things I can't do but there are alot I can just slower. I can still put nail polish on my nails yet he scored me at 29. I demanded to be evaluated by another neurologist. After meeting with the other physician my score changed to 36.

My advice to anyone running into roadblocks with your neurologist or getting approved for medication, advocate for yourself and don't give up.

 

[Marieb425]

Lisa - when Cigna denied the Radicava ORS the denial letter was a form letter, but it had a doctor’s name on it at the end of the letter and she specializes in “pulmonary and sleep medicine” (we looked her up).

We didn’t have an issue with the Relyvrio approval with Cigna. I just asked him about the timeline - we brought the paperwork to his ALS clinic appointment on October 6th and Cigna approved it about a month later. Then we got the medication from Accredo on November 18th.

 

[lgelb]

Whether the denial letter is signed [often by a medical or pharmacy director, whose name is on all manner of letters and likely didn't even see, let alone make, the decision in question -- below their pay grade] or not, every PBM and plan has an appeals process.

And yes, always the squeaky wheel -- most patients don't appeal.

 

[Buglaw]

Good news. My Relyvrio was apparently approved a week ago. The pharmacy just never called me to set up the delivery. Anyways, all good now.

 

[affected]

Great news!