ALS Canada Advocacy Update July-September 2024
October 01, 2024
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At the ALS Society of Canada (ALS Canada), we see firsthand the tremendous impact of an ALS diagnosis – physically, mentally, and financially.
The realities of the disease are harsh – and they reinforce the need for better government support and access within the health care system. That is why – grounded in the experiences of people living with ALS – ALS Canada advocates for better support and access within the health care system.
Key advocacy areas
We engage with government officials and key decision-makers to create policy change that will have a meaningful impact on people living with ALS today and in the future.
Equitable, timely, and affordable access to therapies
The current drug approval and reimbursement processes in Canada do not function in a way that reflects the realities of what it means to live with ALS.
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Improved home and community care
We want to see a future where families affected by ALS across Canada and in Ontario have sustainable support for families and caregivers.
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Research funding to create a world free of ALS
The federal government has a role to play in providing dedicated funding for ALS research to make significant steps towards discovering effective treatments for ALS.
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Our Advocacy Approach
Advocating on a federal, pan-Canadian, and provincial (Ontario) level, we build and maintain champions with government, industry and the broader health charities environment in support of the issues that affect people living with ALS.
Federal
We advocate for federal funding for ALS research, to better identify treatment targets, support earlier diagnosis and strengthen the environment in Canada to attract further clinical trials and private-sector medical research and development investments.
Pan-Canadian
Working with many stakeholders in the ALS ecosystem including ALS clinicians. individually and through the Canadian ALS Research Network (CALS), researchers, and other ALS organizations, we collaborate on initiatives to expedite drug approval and reimbursement pathways and addressinh the needs of people affected by ALS, sharing our learnings, resources, and tools with the ALS community, building on grassroots initiatives where appropriate and aligned with our advocacy priorities.
Provincial
We advocate to the Ontario government for expedited and equitable access to approved therapies and appropriate healthcare resources, such as clinical care, personal support workers and equipment.
We also engage at the local level with health care providers and agencies to help the people we support access ser
Additional advocacy
Our advocacy efforts also cover other areas that are outside of our three advocacy priorities.
October 4, 2016 was a momentous day for the ALS cause in Canada as the first meeting of the federal ALS Caucus was held. The ALS Caucus represents an established group of Members of Parliament and Senators from all parties who have come together to better understand the realities of ALS after seeing their colleague Mauril Bélanger, MP, progress rapidly following his ALS diagnosis.
The Caucus provides an ongoing forum for discussion of the research, treatment and care challenges presented by an ALS diagnosis, as well as opportunities to address them.
Research suggests that people who served in the military have an increased risk of developing ALS. Because of the progressive nature of ALS, some veterans were dying of the disease before having the chance to submit their case to Veterans Affairs Canada. It was clear that veterans diagnosed with ALS needed better, faster access to support.
Along with our volunteer advocates, we helped lead efforts to improve disability benefits for veterans living with ALS. In 2010, Veterans Affairs Canada increased the benefits and improved support for veterans living with ALS. To learn more, visit veterans.gc.ca or contact the Royal Canadian Legion.
Though the precise cause or causes of ALS are unknown, research is increasingly suggesting that genetics may play a big role in the development of the disease regardless of whether it is passed from a parent to his or her child, which happens in approximately 5 to 10% of ALS cases.
As a member of the Canadian Coalition for Genetic Fairness (CCGF), we actively lobbied government to pass Bill S-201, which seeks to prohibit and prevent genetic discrimination. The bill received royal assent in May 2017 and was passed into law.
More information is available on the CCGF website
Advocacy news
Check out our quarterly advocacy updates for news on out advocacy efforts, as well as relevant developments within government.