On May 5, 2017 the US food & drug administration (FDA) approved a new drug to treat ALS! Radicava (Edaravone) is the first new treatment approved in 22 years! For me, however, I see it as the only treatment option offered in over 100 years of the existence of ALS. I say that because Rilutek (Riluzole), a drug that is used for ALS in both the US and Canada only seems to extend the patient's life for a few months, and who wants to live 3 months longer when you are paralyzed? That and the fact that I am unable to take it as I also have a liver condition.
Edaravone was initially used in Japan to treat stroke. In a 6 month clinical trial in Japan, they demonstrated that edaravone could slow progression by up to 33%! Now the clinical trial only had 137 participants, half of which received placebo. While not a huge study, it still gives me hope, imagine if my progression could slow by 33%, I find that incredibly significant.
The US FDA approached the Japanese drug developer Mitsubishi Tanabe about filing a marketing application in the US. It will be available for use in the US this August 2017! Let's hope that Canada reaches out to them as well, for the company to seek approval with Health Canada.
The difficulties with the treatment are that it requires an intravenous infusion for 14 days, followed by a 14 day drug free period, with subsequent treatment cycles. Also the high cost (about $145,000 US/year, not sure what the cost would be if approved in Canada), and of course the possibility of adverse reactions.
I am aware of the fact that this new drug may not be available to me specifically, and there are many challenges involved with receiving it, however, to see a new drug approved for the treatment of ALS in my lifetime, was something I never thought I would see. I'm not saying that I don't have hope, it's just that with such a short life-span of living with ALS, I was advocating on behalf of those who will be diagnosed with ALS in the future. But I guess treatment and a cure has to happen during someone's lifetime!
This development may also spur momentum for drug companies to pursue the development of additional treatment options. And if Radicava actually significantly reduces progression, then what elements of the drug contribute to the slowing of ALS? What an incredible opportunity for researchers to study this potential breakthrough!
All in all, this is a heartening and encouraging discovery to me, quite awesome in fact!
These are just my thoughts after hearing the news, for actual facts, I have included several articles on the release of Radicava (Eradavone) below.