For 100+ years, thousands and thousands of people diagnosed with ALS have been sent home by their doctors to die a horrific death because there are no meaningful treatments available. This represents an ongoing health crisis in Canada and around the world.
ALS (also known as Lou Gehrig’s disease) gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, we lose the ability to walk, talk, eat, swallow and eventually breathe.
Eighty percent (80%) of people with ALS die within two to five years of being diagnosed. Those who live for longer than five years usually rely on a ventilator through a tracheotomy and can only communicate with their eyes and eye-gaze technology. It has been described as living in a “glass coffin”.
Approximately 3,000 families in Canada at any given time are dealing with ALS, and each year approximately 1,000 families in Canada lose a loved one to ALS and a similar number of families face a new diagnosis of ALS.
As such, we knew on January 1, 2020, before the COVID 19 pandemic, that approximately 1,000 people in Canada would die this year from ALS because that is approximately how many died last year and the year before that.
The lifetime risk of developing ALS is 1 in 400, which is about equal to Multiple Sclerosis and is five times higher than Huntington’s disease. However, the rapid progression and deaths of people with ALS have prevented the establishment of a critical mass and a loud collective voice. Often, one of the first things taken from us is our ability to speak. This dynamic is driving our demands for urgent action.
Most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. Many members of ALS Action Canada were diagnosed in their 20s.
There are no known lifestyle choices associated with ALS – we have not brought this on ourselves. In fact, there a higher incidence of ALS in people who are first responders, high-level athletes and those who have served in the military.
There are two types of ALS: “sporadic” ALS which afflicts 90% to 95% of people with ALS and “familial” or hereditary ALS which afflicts the balance.
At present, there are only two approved drugs in Canada to treat ALS: (1) riluzole (Rilutek), approved in November 2000, which may extend life by six to 19 months and (2) edaravone (Radicava) approved in October, 2018, which may make a modest difference for some people.