The ALS Society of Canada (ALS Canada) today marks Rare Disease Day 2022 by calling on the Ontario government to champion the urgent need for faster access to approved therapies for people living with Amyotrophic Lateral Sclerosis (ALS) – a devastating terminal disease that 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.

“While today represents an important opportunity for all rare disease communities to raise awareness about the need for health policy change, every minute of every day is critical for people living with ALS who are awaiting access to treatment,” said Tammy Moore, CEO of ALS Canada. “When you consider the average life expectancy of ALS is only three years post diagnosis, it is clear the current drug approval and reimbursement processes in Canada do not function in a way that reflects the realities of living with this disease.”

ALS Canada – in consultation with the broader Canadian ALS community – released the Time is Now Position Paper that offers two concrete solutions to getting Health Canada-approved therapies to Canadians living with ALS in a timeframe that more accurately meets the urgent needs this community.

During the week of March 7-11, 2022, Ontario’s ALS community will be meeting with elected officials and other decision makers within the province’s healthcare system as part of ALS Canada’s first-ever Virtual Advocacy Week. The purpose of these meetings is to encourage the Ontario government to build and implement a plan in partnership with the ALS community that would see the province championing the two solutions outlined in the position paper. To date, several meetings have already been scheduled with elected officials across Ontario.

“My sister Carla was diagnosed with ALS in November 2019 at 42 years of age. Carla was a vibrant, energetic first grade teacher who was always on the go and always helping others. By May 2020 she had lost the ability to speak and by July she was confined to a power wheelchair and needed a feeding tube,” said Paula Rodriguez, from Maple, Ontario. “It only took 19 months for this cruel disease to take my sister. The sad reality is that under the current pathways in Canada, it takes double the time my sister was living with ALS, for treatments to be made accessible to people who need them.”

A diagnosis of ALS and the impact of living with the disease have a profound and pervasive effect on the lives of not only those who are struck by this devastating disease, but also anyone who loves and cares for them. The realities of the disease are harsh – and they reinforce the need for better government support and access within the healthcare system.

“I think we can all agree that when it comes to expediting access to ALS treatments, the time is now. That is why the ALS community is looking beyond Rare Disease Day towards what we want to see created in Ontario today and in the future,” said Ms. Moore. “We believe that the solutions put forward in our position paper provide a feasible roadmap to get ALS therapies to Canadians – urgently, predictably and equitably.”

Posted in: Advocacy