I realize this doesn't add anything to the conversation, but as someone whose mom passed away from ALS, I welcome anything that can remotely improve this terrible disease. Watching her go from walking to barely able to lift a glass in six months was devastating and I'd have given much for 33% more able-bodied time with her.
I have some problem to understand why this is presented as a therapy (may be I do not understand what it implies) when the paper (or I may have found the wrong paper) states:<p>"Edaravone showed efficacy in a small subset of people with ALS who met criteria identified in post-hoc analysis of a previous phase 3 study, showing a significantly smaller decline of ALSFRS-R score compared with placebo. There is no indication that edaravone might be effective in a wider population of patients with ALS who do not meet the criteria"<p>Another paper is quite skeptical:<p>"Edaravone: a new treatment for ALS on the horizon?
Orla Hardiman, , Leonard H van den Berg"
<i>According to the ALS Association, the treatment’s list price is $1,000 per infusion, or about $146,000 annually, and it is expected to be available for use by August</i><p>A whole new class of drugs is reaching these prices. "The insurance" doesn't really pay; those xx% increases every year in premiums do.
> According to the ALS Association, the treatment’s list price is $1,000 per infusion, or about $146,000 annually, and it is expected to be available for use by August.<p>$146k/year for being able to live a better life, or maybe at all. right up there with cancer treatments according to my ethical standards.
probably better to post the paper:
<a href="https://www.ncbi.nlm.nih.gov/pubmed/28522181" rel="nofollow">https://www.ncbi.nlm.nih.gov/pubmed/28522181</a>
Paywall, tho. Someone with university access could probably help more than I.<p>The stuff is called edaravone. Radicava is the name that was made up by some marketing intern.
> Results from the six-month Japanese clinical trial — in which 137 patients were randomized to receive either Radicava or placebo<p>Giving placebo to ALS patients? How is that allowed ? They should be able to tell already what is the course of a typical ALS patient without using such methods. For cancer drugs there are no placebo used since there is extensive survival data available to prove whether or not a drug actually makes any difference.