ALS Canada Marks Rare Disease Day 2022 By Calling on Ontario to Champion Expedited Access to ALS Therapies

TORONTO, Feb. 28, 2022 /CNW/ - 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."

About ALS

ALS is a neurodegenerative disease that gradually causes paralysis because the brain is no longer able to communicate with the muscles of the body. Over time, as their motor neurons die, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe.ⁱ 

An estimated 3,000 Canadians are currently living with ALS. Each year approximately 1,000 Canadians die from ALS. A similar number of Canadians are diagnosed with the disease each year.ⁱⁱ

There is no cure for ALS and few treatment options for the majority of people living with the disease.ⁱ Approximately 80 per cent of people with ALS die within two to five years of being diagnosed.ⁱⁱ  That is why the ALS community measures time not by months or years, but by loss – loss of function and loss of life.

About ALS Canada

The ALS Society of Canada is working to change what it means to live with amyotrophic lateral sclerosis, an unrelenting and currently terminal disease. Grounded in and informed by the Canadian ALS community, we respond to the urgent unmet need for life-changing treatments by investing in high-quality research that will fuel scientific discovery and by engaging industry, supporting increased clinical capacity and advocating for equitable, affordable and timely access to proven therapies. Responding to the tremendous need for current and credible ALS knowledge, awareness and education, we empower Canadians affected by ALS to navigate the current realities of ALS, be informed consumers of ALS information, and advocate effectively for change. In Ontario, we provide direct community services to help people navigate ALS. Founded in 1977, we are a registered charity that receives no core government funding – our work is powered by generous donors who share our vision of a future without ALS.

To learn more, visit www.als.ca

References:

 ⁱ ALS Society of Canada. About ALS. Available at: https://als.ca/what-is-als/about-als/. Accessed on February 24, 2022.

ⁱⁱ ALS Society of Canada. ALS Figures. Available at: https://als.ca/what-is-als/about-als/progression/. Accessed on February 24, 2022.

SOURCE ALS Canada

Email: [email protected], Tel: [phone]