This article has been updated
A group of Montrealers is pushing Heath Canada to approve a new drug for ALS, saying the medicine needs to be available immediately.
The group is arguing that the process for approving drugs is too slow for those suffering from the terminal illness, particularly because life expectancy in patients is a mere 2.5 years.
Edaravone, a drug proven to slow progress of the illness, has not been approved in Canada. It was approved by the U.S. in May, and has also been approved in South Korea and Japan.
Patients say they have to travel abroad to receive the medication, and can only return with a 90-day supply. Further, nurses refuse to administer the intravenous drug.
Patient Norman MacIsaac has written a letter to Canadian Prime Minister Justin Trudeau saying the drug approval process is flawed and he wants to see swift changes.
“We have to fight to be heard by the government. I really look forward to seeing the answer from the prime minister, because I won’t accept anything less than a solution,” he said. “I won’t accept anything less that the government telling me we’ll form a committee with parliamentarians, bureaucrats, neurologists and patients to look into this issue and find a solution as soon as possible.”
There is no cure for Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s Disease, which gradually paralyzes people.
ALS affects about 3,000 Canadians.
For more information, visit ALS Quebec
