Radicava: updates on usage and cost concerns

KarenNWendyn

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We haven’t had any recent threads on Radicava. Those of you who are taking it, do you have out of pocket expenses for the drug? Have you experienced hassles in getting it? How many have been on it and then stopped it, due to expense, side effects, or lack of perceived efficacy? If you stopped it, did your progression appear to accelerate?
 

sassy

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My husband has been on radicava for the last 12 months. We do the infusions at home and have zero out of pocket cost due to my generous health insurance plan. He has not had any side effects and his progression is extremely slow. His right leg is the only area affected at this time but he has lost quite a bit of muscle mass in both legs.. Compared to most als patients he is doing so well- we are elated......is it the radicava?????? Who knows... I believe his als clinic is doing an in-house comparative review of their patients on radicava. He began this treatment a few months after diagnosis.

Sassy
 
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mytmouz

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My not so generous insurance plan is repeatedly denying it for me...
 

lgelb

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On what grounds are they denying it, Mouz?
 

mytmouz

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Among other things, They want an undefined length of time study of my breathing to see if shows a defined decline. I keep telling them, (and the dr does as well) that it less effective, as you lose function. They say it is manage costs. I tell them they are trying to make me leave quicker...
 

DFM20

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My wife has been on Radicava now for 21 months. She has not had any adverse side effects, but it is very difficult to gauge the effectiveness. The ALS has progressed quite a bit during that time. Whether it would have progressed faster without the Radicava is unanswerable. We had great difficulty getting the infusions started. Our in network provider was refusing to give it at their infusion center. We had to try going through an out of network home infusion provider. It took four months of constant phone calls to clarify misinformation. When we finally had it set up, I reached out to a friend in the administration of our in network hospital to question why they had refused. He questioned and pressured the right folks and the infusions were quickly set up. She went to the infusion center for 15 months, but the trips just became too taxing. For the last 6 months we have been doing home infusions. My insurance has covered the vast majority of the cost, though we have hit our catastrophic limit early each year. Fortunately, I have friends who are RNs who have helped us with the home infusions, since the insurance will only cover the nursing visits accessing and de-accessing her port, and we are expected to do the infusions ourselves in between.
 

Nikki J

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Mytmouz have you seen the prior authorization ( PA) form they are using? All of the ones I have seen mirror the entry requirements of the successful Japanese trial. One of the things was average to fast progression shown by frs. The only specific respiratory requirement I have seen was frs of at least 80.

You can appeal formally and if you have the PA and they are making up other rules even though you meet the criteria that could be the basis. At least you should be able to see where the problem lies
 

KarenNWendyn

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DFM20, do you have high co-pays for the drug itself? Or is the insurance balking on fully covering the cost of administering the drug (nursing costs, etc.)? I’m glad to hear you’ve been able to do infusions at home.
 

Bestfriends14

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Wayne has been on it for 23 months, no side effects, no out of pocket expenses, and very slow progression. We think, along with Wayne's neuro at the ALS clinic, that the Radicava has contributed to his slow progression. He has had obvious ALS symptoms for 4 years, diagnosed 27 months ago, and still has full use of arms, speech, breathing and can walk very, very short distances with walking sticks, but needs wheelchair for all other movement.
 

KarenNWendyn

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BestFriends, so it’s being covered in Canada now, or is that Province by Province?
 

Bestfriends14

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It's not being provincial or federally covered, but Wayne's neuro submitted his name as someone who is benefiting from the drug (we shipped from Japan at our own cost until recently), and some type of charity organisation (not totally sure) is covering costs for now. What does this look like for next year? We are not sure but hope to continue to have coverage.
 

DFM20

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Karen,
The insurance never really balked. There were problems with the providers and Carecentrix, which I still don’t completely understand, kind of a middleman between the providers and the insurance company. My insurance treated it as a specialty drug which would have made my copayment for the drug $150 per month, not too bad when the pharmacy charges $1600 per dose. My insurance covers 50 skilled nursing visits per year (and all the supplies), which is why the infusion provider only sends nurses for the accessing and de-accessing infusions.
 

blitzc

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01/2018
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OH
I was diagnosed 21 months ago and started Radicava about 6 weeks later, during which time included a second opinion. This second opinion neuro had my approval within two weeks. My husband was trained for at-home infusions, I had surgery for a med-port, we were given home health nursing for accessing needles and any other needs, and my insurance covered everything.

However, this past January we started having billing problems and were getting statements showing we owed $50-70,000. There was also a problem with getting approval again using Option Care. My doctor suggested a change of pharmacies to Soleo and had approval within a day. I have been with Soleo since March. Still no issues with insurance coverage. ****Just started a new insurance plan, having recently retired, as we wait for Medicare to kick in, and so far no problem for the September cycle.****

I only had very mild side effects the first two cycles with mild diarrhea. None since!

Effectiveness-I feel much better, more energetic, more willing to be active and positive. Close to the cycle coming up again, I begin to feel more exhaustion, unwillingness to participate in activities, less strength, and slower movements requiring greater efforts. Family, friends and colleagues can always tell when I am due to start again or if I am currently getting my infusions. So that tells me it makes some difference. I had a lengthy plateau of symptoms until just recently (spring) when I progressed much more in a shorter period of time. Now I feel about the same as I did at my last clinic visit 3 months ago.

I know I am losing strength and abilities. I now use rollator or wheelchair outside of the home. I can dress, shower, and eat independently for the most part. Help with these activities is always appreciated and saves me energy but not a necessity. (My greatest difficulties are bras and cutting food) I recently started using Trilogy at night. Is it slower because of Radicava? I don't know but my doctor is pleased with my "lack of progression".
 

KenM

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Jun 21, 2019
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PALS
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03/2018
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I have been on Radicava for 14 months. No side effects. As others have posted, hard to know if my slow progression is because I'v always been slow progression or because of the Radicava. Case studies are pretty unhelpful for gauging effectiveness of a therapy. My insurance has covered it, except for the high deductible I have to fork out at the beginning of each year. I've learned how to administer the IV myself ( I wrote down each step so I don't forget anything) so I only need a nurse to come to access the port. I can de-access it myself at the end of each cycle, that's easy. The biggest irritation for me is keeping the plastic seal taped to my chest. I sweat a lot in the summer heat and the tape keeps coming loose. But that's manageable. Oh, and once the plastic clip on the port came loose while I was at a dinner party and in a white shirt, blood started to backflow out the tube and seeped through the cap, and suddenly I had an expanding blood stain across my chest that made it look like I'd been shot! Harmless, but high entertainment.
 

Scotiaspirit

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11/2015
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CA
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Nova Scotia
I started Edaravone in March 2018, and get it from Dr. Yoshino’s clinic in Japan. There are some pALS that got on the SAP here in Canada, but that is less than ten percent of the pALS. It costs me just a couple dollars short of $2,000.00 for three cycles of drug. The province does pay the nursing costs and infusion costs.I have had some private donors who have helped me cover some of the costs. When I get to the end of the rest period, my fasciculations are more rampant and cramping increases. As far as side effects, my balance is somewhat impaired at times, and I get dry patches of skin peeling on my hands. Since being on the drug, my progression has been still happening, but seemingly much slower, than compared if I was not taking it. My swallowing seems more stable. I am still progressing, but believe it to be much slower. Other than skin peeling and balance issues, no other noticeable side effects.
 
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