Oral Radicava

Status
Not open for further replies.
Isn’t it difficult enough to have ALS, or watch your partner or family member live with it, let alone having to deal with the cost of a drug and the paperwork?
Can someone share if they have seen/ felt benefits of the radicava over riluzole?
 
I guess I was fortunate I still have private insurance. It took 3 weeks but I received mine yesterday. 70.00 out of pocket. I have not had infusions prior.
 
I'm so frustrated, I've been on Radicava infusions for 2 and a half years and was just denied to change to oral form. I have excellent federal employee insurance and still got denied. Its bad enough to have to deal with this disease but even worse working with insurance companies.
 
This is my first post to the forum. My husband, who has ALS, just moved on to Medicare via SSD and Silverscript Plus (Aetna) is saying the first copay and maybe second copay will be $3698, and copays thereafter $689. He was not charged anything with private Horizon BC NJ for the previous two months. Does anyone have suggestions about Medicare part D--he will be 65 next month.
 
Medicare part d in my experience is nowhere near as good as drug coverage was with private insurance. If you have a decnt supplement for part b the rest of medicare is better ( again my experience). Normally you can look up drug plans n medicare.gov input drugs and see coverage and compare costs but because this is new it doesn’t seem to be in the search list. The basic rule for part d is this 2022 Medicare Donut Hole | Part D Costs and How to Save Money so after you do the first month you will be in the catastrophic phase and I think the copay will be the same no matter what. For comparison my aetna plan doesn’t cover it at all but I have a lower tier one.
 
Sorry to hear. What explanation did they give you for the denial?
 
They told me that my ALS /FRS score didn't meet their criteria. I'm now in the appeals process. They said that you have to score a 2 or higher in all 12 of the catagories. I had a Peg placed in April and because I supplement feedings they gave me a score of 1.
 
My husband has also been receiving infusions for years.
We are awaiting a reply to the oral request. Just seems very odd that you would be denied the oral drug which placates the transfusions which you were approved for.
 
I agree. I hope his approval comes soon. Meanwhile I still get my infusions.
 
You do qualify for Medicare, maybe you’re thinking Medicaid. If you have an ALS diagnosis, no matter what age, you qualify.
 
Lisa, that "2 or better" bar sounds kind of crummy to me, especially since you were approved for infusions. I hope the appeal is successful.
 
Bill keeping my fingers 🤞 crossed. I've been arguing with my ALS clinic for a while about the ALS/FRS scoring. It seems that everything is black or white with no gray areas. I am still pretty independent, still walking although slower. I raised my concerns about my scoring and did a telehealth with my neurologist on Wednesday. After answering all the questions they asked they said my score was a 36. I know someone with an ALS/FRS score of 14 and is totally dependent on their caregiver yet they were approved for the oral form. It baffles my mind. Anyhow my neurologist was going to do a peer to peer with insurance to see if it would go through so for now I'll continue with the infusions.
 
One correction -- not everyone with an ALS diagnosis qualifies for Medicare at <65. My husband did not -- he did not have enough work credits due to a complications of a genetic disorder.
 
Status
Not open for further replies.
Back
Top