Edaravone APPROVED in US!!!

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I'm sure my Medicare, Part D won't cover it. They don't even cover generic Aciphex. I have to get it in Canada where it costs 1/8 of the cost here.

The summaries I've read say effective for those earlier in the disease. Since it took over 2 years for me to get a diagnosis, I'm not even sure it would help.
 
This is the official word on it in Australia this morning.

https://curemnd.org.au/wp-content/uploads/Edaravone-Announcement.pdf

We have two main hurdles now - the TGA approval (like your FDA) and then inclusion on PBS.
PBS (Pharmaceutical Benefits Scheme) will be critical as this will make it almost free (like any other PBS drug for most with MND, being on a pension it should cost around $6 per script) for Australians to access the drug itself, however we will have to see where it would be administered. If it is done through MND clinics then that would mean the administration will be free.

However it plays out above it will be a while before it's available here but CUREMND is obviously going to make a huge impact on expediting this so I'm very thankful we now have this organisation.
 
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It will be interesting to see what happens with insurances. Of course they won't want to pay but they do cover expensive ms ,oncology and hiv. The argument for aciphex exclusions is probably there are other choices. PALS are low on choices.

Time since onset was not in the FDA approval as I feared might happen but insurances companies might place limits that way or by functional level as the successful group was mostly living independently. The company is clearly expecting a lot of insurance issues as they have set up a program and want you to call as soon as you get a prescription

It is a fair treatment burden for PALS too of course.
 
However it plays out above it will be a while before it's available here but CUREMND is obviously going to make a huge impact on expediting this so I'm very thankful we now have this organisation.
Click to expand...

I'll have to contact them to rally for every patient. Under those guidelines in the PDF, my husband won't qualify for a script - he has had this disease for 5 years as he is slow progressing. Where did you find that link Tillie?
 
In addition to weak data and dosing burden, the AEs seen in the stroke trials, where there is more data, included fatal kidney failure, abnormal liver function, and exacerbations of brain infarction. Later, the Japanese label had a warning added that it should be used cautiously in elderly people due to coagulation disorder concerns.

We don't know yet if PALS will have the same level of risk, but as a PALS I would think twice and get baseline testing if you have pre-existing liver, coagulation or kidney issues, or a history of stroke. Of course, all neurologic drugs, and most others, have side effects -- the flip side of anything powerful enough to help.

It will be covered by major US payors as they will count on the dosing burden and small patient population to limit their exposure. Projected US sales are only $90M this year.
 
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AKNate I would suggest you directly contact the CUREMND foundation - that link was emailed to me this morning from them. They have their finger on the pulse so to speak.

https://curemnd.org.au/

They have a contact link there.
 
The ALS Therapy Development Institute will hold a public webinar to discuss Edaravone on Wednesday, May 10, 2017, 6:00-7:30 PM. Advance registration required.
 
It sounds like given his overall great health ( except for having ALS, oh the irony! ) and his slow progression, from what I see so far Brian may be a good candidate for the drug. I actually think of you have Medicare and a supplemental this will work out to be affordable. If it's not, I know Brian would not use it anyway. He has said before the only thing he would spend big on was a certified shot at either a cure or a major extension of functional life.

I would say though don't be do pessimistic about the cost aspect- this could work out.
 
I hope Brian gets some hope from this news. And I do think the company is going to want to help people initially anyway to get things started in the US especially those they believe would benefit most.

For another perspective my local tv station reported this and interviewed the Frates( parents of Pete) and my doctor. My doctor's comments and also some of the Frates' were more focused on the hope that this signals a new attitude at the FDA and may mean other things will come out of the pipeline faster
 
Can anyone tell me about the length of the infusion treatment?
AKNate, whose husband is doing this in Japan, said he will be on it daily for the rest of his life. I've heard other regimes talked about too so I'm really confused.
 
Hey Tillie,

Hubby is on daily here in Japan. I found out recently when we get home he'll do 4 days on 3 days off, the doctor said this was ok for him because he was slow progressing.

But yes, everyone seems to be on differing regimes to what they're prescribing. Our doctor is one who was part of the trial, he did it at his clinic & is also the guy who discovered it (from what I hear). Look up Dr Yoshino.
 
Hi,
How long is he on it?
And is there any improvement he notices?
 
I signed on for updates. You never know- infusion drugs like this may be the first chapter - or at least the Prolog to a regiment that will eventually keep people alive and functioning for many years post Dx.

I am just going to randomly guess that before there is a cure for ALS there will be a way to treat it as a chronic but manageable condition.
 
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