Canada's ALS Community Deserves So Much Better — Here's Why

Despite recent advances in ALS treatments, Canadians living with the rare neurodegenerative disease still face terrible barriers in accessing therapies.

You’ve likely heard of the rare neurological disease amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. But do you really know what it is and what it means for people affected? Muscle twitches, cramps, and stiffness; slurred and nasal speech; and progressive muscle weakness, which eventually affects chewing, swallowing, speaking, and breathing — these are the horrific and debilitating symptoms that people living with ALS face. The disease progressively paralyzes people because the brain is no longer able to communicate with the muscles of the body that we’re typically able to move at will. Worst of all, ALS has no cure and an average life expectancy of just two to five years from the time

of diagnosis.

But while there have been limited to no effective treatment for ALS for decades, times are changing. New advances in research and new medication development mean that there are now drugs available that may slow progression of the disease. Why, then, do so few Canadians with ALS have access to treatment?

The overwhelming burden of ALS

Kris Noakes is a citizen of the Anishinabek Nation, a member of Nipissing First Nation, and a community advocate at the municipal, provincial, and federal levels. She and her family have been greatly impacted by ALS for generations — Kris, her father, her grandmother, and many other family members either live with the disease or have died from it.

“An ALS diagnosis is a family’s

worst nightmare,” says Kris. “And it’s not just the people diagnosed with ALS who are affected. We hear about PTSD amongst family members and caregivers who experience the disease with the people they love who are living with ALS. It’s a terrifying disease. And it’s one of the most under-funded, under-acknowledged, and misunderstood diseases.”

The burden of disease is significant when it comes to ALS — not just physically and psychologically but emotionally, financially, and socially. And because

ALS has a progressive nature, time is of the essence when it comes to diagnosis and treatment.

The clock is ticking

“In my family, my father is one of the only ones who have lived through their 60s,” says Kris. “There’s urgency here. The clock is ticking.”

Kris was diagnosed with ALS in 2021 after a long period of coping with unexplained symptoms. She struggled to receive care, faced discrimination and systemic barriers, and was disheartened at the care she was given. “I was told there was nothing for me — no hope, no treatment, nothing,” she says. “That was really devastating.”

Kris began doing her own review, and what she found astounded her. “I discovered all this research that was happening, I found the ALS Society of Canada, and I got connected with another neurologist,” she says. “A whole different world opened up. Finally, I was embraced and supported.”

The ALS community understands the urgency of the advocacy work that’s happening in the space, including by the ALS Society of Canada, where Kris is now a member of the Board of Directors.

Fighting for change

The ALS Society of Canada is a fierce advocate for affordable, timely, and equitable access to therapies for Canadians living with ALS. Although there are three Health Canada-approved treatments for ALS, it can be challenging for people with the disease to gain access. People living with ALS are often forced to wait years watching a series of drawn-out, confusing, redtape-filled processes before decisions are made on whether the drug will be covered by federal, provincial, and territorial drug plans. But people with ALS, like Kris, simply don’t have this luxury of time.

We must do better. There’s a dire need for change in Canada's drug approval and reimbursement processes for people living with ALS. Greater access to medicines for all Canadians and an investment in research are critical.

“Achieving equitable access is imperative, whether it’s to genetic testing, care, drugs, or treatment,” says Kris.

Achieving equitable access is imperative, whether it’s to genetic testing, care, drugs, or treatment.