Radicava with ALS score of 2 or less

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AlmostLostSense

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Joined
Aug 2, 2012
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Loved one DX
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09/2011
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US
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123 south st
Anyone with advanced ALS on radicava?
Would insurance cover it?
 
There are numerous, active threads on Edavarone / Radicut / Radicava.

Have you searched them? :)
 
I have a friend who is on BiPap 24/7, bulbar onset, advanced, no feeding tube and she tried it for a couple of rounds. She didn't see any improvement so she stopped.
 
The studies did not suggest a benefit for people with advanced disease, ie poor functional scores. I doubt insurance would cover it under these circumstances.
 
Actually, the studies didn't include people with Advanced ALS, so nobody knows how advanced-stage PALS would respond. The FDA approved the drug for all PALS, but insurance companies, for the most part, are covering only those who meet the inclusion criteria for the Japan trial...thus excluding those more advanced. I don't fault the insurance companies for having restrictions like this, but my wife (who is well advanced) would like the opportunity to see how it may benefit her. After a great deal of leg work and time, her insurance company denied coverage. We have appealed the decision, but don't hold out much hope. I am also realistic, and wonder if it wise for her to take the drug should she be approved. She is determined to do so, so perhaps we will see...
 
Is your PALS on a vent? How far along is she in terms of paralysis?
Radicava is a free-radical scavenger. Its role in ALS is to slow damage to nerves that are still fairly functional. It will not make damaged nerves healthy again — just slow the rate of decline. If the ALS is advanced, most of the motor neurons will no longer be viable and will have been replaced by scar tissue (“sclerosis”) which is irreversible by any means..
So the question is: what are you and your wife hoping this drug will do for her?
 
A woman I met at a support group had Blue Cross. Her husband had started the treatments , Blue Cross then said they wouldn't pay for the treatments any longer.
 
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