Health Canada has approved a new ALS drug that is showing potential to slow progress of the fatal disease.
Generically known as Edaravone, its brand name is Radicava and it's the first promising ALS drug to be approved in Canada in almost 20 years.
Canada is the fourth country to approve it, after Japan, South Korea and the U.S.
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease also known as Lou Gehrig's disease.
It eventually causes people to lose the ability to move, speak, swallow and breathe. Patients usually die within three to five years of diagnosis.
The primary drug Canadians with ALS have relied on since 2000 — Riluzole — can extend life by up to about three months.
But in a small clinical trial in Japan, Edaravone was shown to have slowed the disease by 33 per cent. It was only a small trial, but for people facing this brutal disease it offered hope.
ALS patients in Canada have been pushing the federal government to approve the drug. Some desperate sufferers have spent tens of thousands of dollars to fly to Japan to buy it and bring it back home.
The disease took on new significance on Parliament Hill when Liberal MP Mauril Bélanager was diagnosed with it; he died in August, 2016.
A number of MPs from different parties subsequently formed an ALS caucus, which works to raise the profile of the disease and push for a cure.
Earlier this year, given the limited array of treatment options for ALS patients, Health Canada began reviewing Edaravone through its priority review process.
That process accelerates the review to 180 days rather than the typical 300 days.
While the drug is approved as of today, questions remain about when it will be made available to patients, how the intravenous drug will be made available, how much it will cost and who will pay for it.