Old 05-11-2017, 07:49 PM #1 (permalink)
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Default edaravone for PLS?

Anyone have any information that would suggest edaravone is effective for PLS?

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Old 05-11-2017, 08:13 PM #2 (permalink)
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Default Re: edaravone for PLS?

I posted the exact same question on the ALS Canada's FB announcement. I was contacted via pm and advised to communicate with their VP in charge of Research. I've asked him the question and will post here when I hear back.
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Old 05-13-2017, 12:43 PM #3 (permalink)
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Default Re: edaravone for PLS?

From my conversation with the ALS Canada vp of Research:

Right now there are various organizations, clinicians, researchers and the like mobilizing to make sure the drug can be provided to as many people as possible. The actual administration of the drug is quite time consuming and takes a fair amount of strategizing to make sure there are adequate resources in place to be able to treat as many folks at possible. There are also discussions going on on both sides of the border about insurance approval, government assistance and cost.

With regards to PLS treatment specifically- and this is the opinion of the Canadian Research VP only- is that it will be made available to those with PLS (He basically said "How could it not?"). However, as folks with PLS have not been included in any of the studies, he doesn't think it will be covered by insurance. It's likely there will be more UMN onset ALS diagnoses in the future to make sure folks are able to access the drug.

From what researchers understand, the drug acts on motor neurons specifically and slows down the initial rate of neuronal death. They found it was most effective in those who are in the early stages of MND. This is due to the fact that later in the disease process a cascade of neuronal death starts to affect astrocytes and microglia surrounding the affected motor neurons as well and this causes it to spread more quickly to surrounding areas. Unfortunately Edaravone only seems to target the motor neurons and does not appear to slow down the degeneration once ALS starts to involve astrocytes and microglia. This is a drug that needs to be utilized early in the disease process to be really effective.

When I asked him about how the drug might help those with PLS specifically he told me the following:

There is an increase in interest to figure out why some people with MND have upper motor issues only and don't develop the lower motor issues that makes it ALS. Is it a genetic quirk that makes some people protected from LMN degeneration? Structural? A different disease process entirely? Anyhow, he mentioned there is some research focusing specifically on that to see if it's possible to harness that ability in PLSers to possibly assist those with ALS.

In short, they're not sure how the drug will affect PLS. Because the disease process is usually much slower in PLS, it's possible the drug might be of help for a larger window of time (or not at all). They don't know. And they won't know till people with PLS take the drug. I asked if there were any studies those with PLS could participate in to track this. He said not at this time. I then asked him if there was a tracking protocol those with PLS could follow while taking Edaravone to provide researchers standardized information to increase understanding of how it affects those with strict UMN involvement. He said the FRS would be the most obvious. He said he had also been contacted by someone with PMA with the same questions I had, and everything above applies to those with strict LMN issues as well.

It was an interesting and informative conversation. It sounds like people are still scrambling because of the recent FDA approval. He said he would continue to keep in touch as they learned more about how insurance companies were going to respond.
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Old 05-13-2017, 05:38 PM #4 (permalink)
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Default Re: edaravone for PLS?

Thanks Fiona - you're a rock star.

It is discouraging that he does not think it will be covered by insurance. That would be my guess as well. I am assuming that Pharmacare would also not cover it for PLS? With the high price tag (some have suggested $150K annually), I can't see many PLS'ers being able to afford it.

I am watching Treeway in Europe. They are working on an oral version of edaravone called TW001. Maybe it will be cheaper?
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Old 05-13-2017, 08:22 PM #5 (permalink)
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Default Re: edaravone for PLS?

He also informed me that some people have traveled to countries where it has already been approved to get treatment. It is cheaper there, and may be a less expensive option for folks. He mentioned Korea as one of those countries (I'm not sure if he was subtly recommending this route, and Korea being the best place to go). I am assuming the others are Japan and India?

Pharmacare will likely NOT cover it. It's considered an ALS drug at this time. A person with PLS taking it would be considered off label and experimental.
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