Cigna - not covering Relyvrio

[Marieb425]

I received this in an email from “I Am ALS” today. More info is on their website:

“I AM ALS is appalled by Cigna’s decision to not cover an FDA approved treatment for ALS that extends functionality and life. Cigna needs to immediately reverse this decision. People living with ALS deserve better and don’t have time to wait while battling an always fatal disease.

We created this form that will tweet for you and tag your senators and representatives so they know that Cigna’s decision is impacting their constituents.”

 

[Clearwater AL]

From what I found they do cover Riluzole and Radicava. ?

 

[sherryL]

it is medicare advantage plans do not cover any als meds. I get riluzole and mexiltine through good.rx. Tudca from amazon. I had to go off of neudexta. It sucks and sad.

 

[lgelb]

I have attached Cigna's policy on Nuedexta. There is national formulary coverage under a PA, which should apply to their MA plans as well. If your plan is saying not, I would question why they are not following Cigna's national formulary.

 

[Tomswife]

My Tom is Aetna Medicare Advantage and Silver Script is the Rx plan. The ALS drugs PALS are taking are not on formulary. We get prior approval for all of these non formulary rx and then they are paid in part by Silver Script.
We have not been denied any rx.

 

[Marieb425]

It seems to be a long and involved story, but Cigna private insurance plans are choosing not to cover relyvrio. Now they’ve modified their original plans and are potentially going to approve it with a process where the patient fights for it and says it’s medically necessary.

But they also put restrictions in place about the patient’s health to qualify. There’s more info on I Am ALS and the ALS Association websites, but I know I can’t link them. Both of those organizations are trying to fight with Cigna.

I attached the ALS association letter that they sent to Cigna. I also attached the Cigna policy on relyvrio.

 

[lgelb]

What an idiotic letter. All payors have PAs on specialty drugs with that kind of price tag. Calling a PA "unconscionable" on its face and implying payors don't routinely narrow reimbursement criteria from label is either completely naive or unnecessarily confrontational. The ALSA is not going to get them to back off a prior auth. Instead, the process could be streamlined, with actual negotiation, not this PR-as-faux-negotiation/shadowboxing. And you don't send an ultimatum letter with no wiggle room days before a negotiation. Seriously.

The name of her own organization is misspelled. The fonts don't even match. Amateur hour.

But what should we expect from an organization that claims PALS will get "the best available treatments and services for your ALS" by working with ALSA centers and chapters and implies that if you don't work with their centers' docs, you are less likely to get rx approved. "These multidisciplinary teams have more experience working with insurers for ALS drugs than other doctors."

Well, it does look like just about any ALS doc has more experience working with insurers than does the ALSA. If you want to try Relyvrio and your doc agrees, don't wait for the ALSA to make a deal. Work the process in place at your plan. If you are asking for a policy exception, make sure the med necessity letter states clear and unique grounds. If it's denied, then you have a hook for local media, if you go that route.

 

[Tomswife]

You may be able to get some financial assistance from the Heathwell foundation for Relyvrio.

 

[lgelb]

Yes, definitely if you are rejected even after appeal, go for financial assistance. Just try your own plan first so that those with coverage are using it and those without have resources to draw on.

It is also helpful when payors look at what other payors are doing, to see more outright coverage, and easier for post-marketing outcomes studies, such as will be necessary to continue/grow coverage, to draw on patients with third-party reimbursement for the drug.

 

[sdemeyer]

Cigna fills their high priced drug through their Accredo group. We pushed them to find some help for the cost and they got the manufacturer cover the cost. My wife has been on it for about 3 months now and we haven't paid a dime. Call Accredo and see what they can arrange.

 

[Nikki J]

You must not have medicare? Amylyx will indeed cover copays if you have commercial insurance. They will also supply it if commercial insurance denies it. They can’t do this for medicare recipients due to government regulations

 

[ALSSupport2023]

If anyone here is wanting help with potentially accessing Relyvrio and getting it covered, you can check out the the following form and fill it out if you like: Having trouble accessing Relyvrio? Let us know - I AM ALS

 

[Clearwater AL]

ALSSuport2023, if you don't mind... who are you? That form asks some for personal
info some may be reluctant to post. What's the security level of the the site or
your site? Being this is your first post.... maybe a little more intro info because your
Bio only states US... no state or city. ?