People living with ALS deserve better support and access to those supports within the Canadian healthcare system.
The healthcare system’s inadequate support goes beyond a lack of financial support and care options—for those diagnosed with ALS, the negative impact is devastating. These individuals are burdened with poor quality of life, while some are even left to succumb to the disease while new ALS-treating drugs are tied up in regulatory processes.
This is why we have prioritized three key advocacy areas that can change these harsh realities for people living with ALS and give them the quality of life and support that they rightfully deserve.
Key advocacy areas
We advocate for change that impacts people living with ALS the most:
Providing timely access to treatments
We believe that ALS-treating drugs shouldn’t take years to be approved for use.
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Improving home and community care
Federal health policy needs to provide more support options for families coping with ALS.
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Funding research towards a cure for ALS
We urge the government to provide sustained yearly funding for ALS research.
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How we advocate
We advocate on a federal, pan-Canadian, and provincial* level
* ALS Canada directly serves people living with ALS in Ontario
Federal
We work with the ALS community to inform our advocacy priorities and empower people affected by ALS as community advocates to bring forward their personal stories.
Pan-Canadian
Where appropriate and aligned with our advocacy priorities, ALS Canada may build on grassroots initiatives. We also work with many stakeholders in the ALS ecosystem including ALS clinicians individually and through the Canadian ALS Research Network (CALS), researchers, and other ALS organizations.
Provincial
We also engage at the local level with health care providers and agencies to help the people we support access services and other resources that can lessen the burden of living with ALS.
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.
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.
Advocacy news
Check out our quarterly advocacy updates for news on out advocacy efforts, as well as relevant developments within government.
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