Radicava / Edavarone - DENIED!! Help?

[mariposa13]

Here's the reply I received from my doctor. The 1st sentence says it all. I'm getting my records and will find someone else. I just hate that all those other people who continue to see him will be treated this way. I have BCBS and I don't think they've imposed any restrictions thus far.

"I am aware of the FDA's approval of this drug for all patients with ALS. The drug was approved based on data from patients who had a FVC (breathing test) at or greater than 80%, a duration of ALS less than 2 years and a threshold score on the ALS-FRS symptom score. Last Friday, you did not meet qualifications for the drug in 2 ways based on the data submitted by the company for the drug approval. For this reason, I told told you on Friday that you do not qualify for the from the drug. I am willing to reconsider my decision, but it runs contrary to the results of the study and my judgement. Your insurance company must approve the drug unless you drug. A prior study of the drug based on the recruitment of more than 200 patients with ALS showed you would not benefit are willing to pay out of pocket for the drug and its administration (more than $150000). The study also showed that the drug works for 26 weaks. We do not know if it continues to be beneficial. Let me know what you would like me to do"

 

[affected]

mariposa did a doctor truly write with such shocking grammar?

 

[lgelb]

CarolSue,
Again, Searchlight may be able to provide access even though UHC doesn't reimburse it. That's what the patient access program is for. Have your doc submit the form.

 

[eliz]

Mariposa - please keep us updated. Every insurance document I have seen so far has the same criteria Nikki mentioned earlier in this thread:

CUT & PASTE -
Medically Necessary:
Edaravone is considered medically necessary for the treatment of amyotrophic lateral sclerosis when all of the following criteria are met:

Individual is diagnosed with definite or probable amyotrophic lateral sclerosis (based on El Escorial/revised Airlie House criteria* or Awaji-Shima criteria*); and
Onset of amyotrophic lateral sclerosis has been less than 2 years; and
Japan ALS severity classification grade* less than 3; and
Score of 2 or more points on each single ALSFRS-R* item at time of therapy initiation.

My pALS is on a vent and I did not think he would be eligible AT ALL until (also earlier on this thread) the mention of Pete Frates. How would Pete qualify with this parameter of what constitutes "medically necessary"? Should pALS on vents go through the process?

 

[Nikki J]

I doubt Pete had insurance approval when his family made that statement on day 1 of the availability. He may have access some other way or may be going through an approval process. Even if he was the very first patient who had paperwork submitted it could not have been processed that fast

He goes to MGH as I do. Less than a week ago at a webinar about the difficult approval process MGH ALS providers stated no MGH clinic patients had received it yet and the whole thing was more complicated than they expected with things changing day by day.

 

[Kristina1]

My FVC dropped from 86 to 74 at my most recent visit. The neurologist assured me she sent in the first FVC from a few months ago that was higher to avoid fighting with insurance. Still waiting on them to approve it. OP maybe your doctor could do this as well and send in the note with the FVC of 81?

 

[CarolSue]

CarolSue,
Again, Searchlight may be able to provide access even though UHC doesn't reimburse it. That's what the patient access program is for. Have your doc submit the form.

Laurie,

I saw that you replied to my comment in this thread but cant read it because an ad is blocking it. Even if I am able to click the ad to disappear, the text also disappears. What can I do?

Carolsue

 

[mariposa13]

Update - I went to another neuro. I don't believe their practice sees many ALS patients (if at all, not sure) but she agreed to treat me. At the visit I expressed my disappointment with my original doctor. She agreed that he's a jerk but also stated he's very smart (I've heard both these comments about him before).

Anyway, the visit went well and she's trying to get Radicava for me. She said they've been discouraged to order any expensive medications but they would try to help me. I filled out the forms and they've submitted. We called to follow up but they haven't heard anything yet. The nurse assured us she'd let us know as soon as they have more info.

I was under the impression that I'd need to go to an infusion center or get the 'at home' set-up. I tried to google search where the infusion centers might be, but no such luck. I don't really care how I get it, but I do want it! Is anyone else having better luck with this??

She also got me back into physical therapy, which I'm very thankful for. Everyone says my strength is good, but ROM is really limited.

 

[Tedstehr]

mariposa did a doctor truly write with such shocking grammar?

And spelling! Weaks?

 

[KW1234]

I just got approved for Radicava by my insurance company. It will be at home infusion therapy. Will update once I start the treatments.

 

[lgelb]

Carol Sue, install an adblocker in your browser, such as UBlockOrigin. Google it and it will come up. No one should be reading this forum with ads. This was my reply [which I will now direct to Eliz as well]:

Again, Searchlight may be able to provide access even though UHC doesn't reimburse it. That's what the patient access program is for. Have your doc submit the form.

 

[Lscott71]

My husband was diagnosed in May and our doctor was pretty straight forward about the criteria for the drug. He has dementia which he's had for over a year (we just didn't know what it was). He has his first infusion set up for Monday, but she couldn't tell me about the financial aspects of it because she was just the scheduling person. The doctor said they don't know that this drug will actually extend life or not. My husband also has his first appointment with the VA neurologist on October 5th. Not sure if they will be using this drug yet or not. Our insurance is up on October 2nd, so he'll be using either Medicare or the VA. He's 48 years old.

 

[emmccain]

My Uncle was diagnosed with ALS last November. We were pretty excited about Radicava, but he was told by his ALS center that literally only one person in the US has been administered the drug so far. This was about two weeks ago. Does anyone know who we can contact about this kind of thing? Specifically, medicare not covering the drug? I will happily make that phone call every day just to feel like we can do something.

 

[Nikki J]

People are starting to get it now. There are reports here on this board and I have seen them in ALS groups elsewhere. We have 2 threads in this section you may wish to look at one is for people reporting their experiences receiving it. The other is about insurance / access issues. Start here and there is a link to the other thread in that one https://www.alsforums.com/forum/gen...-yet-use-thread-discuss-access-insurance.html

I know some people with medicare are getting it somehow from reports elsewhere. It is new and complicated and more complicated with medicare because of its different parts. Was your uncle simply told medicare isn't paying?

 

[KimT]

I have a friend who has FVC below 60 and she has been approved by Medicare and her supplement. She is getting it at Mayo in Jacksonville.