Welcome to ALS Canada’s first Advocacy Update. This new blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government.  Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government.

Access to therapies

Government response to ALS community petition

  • On April 26, the Government of Canada’s response to the ALS community-led e-petition to the Minister of Health was published.
  • Led by ALS advocate Norman MacIsaac and MP Heather McPherson, the petition was presented in the House of Commons on March 11 after receiving over 25,000 signatures.
  • While the government committed to continuing to consult with stakeholders, the response primarily highlighted previously announced health and drug policy initiatives and did not address the urgency faced by people living with the reality of an ALS diagnosis.

Extension of edaravone personal importation

  • On April 1, Health Canada confirmed that Canadians living with ALS can continue to access edaravone through personal importation beyond April 1, 2021 until October 1, 2021. This marks the third extension to edaravone personal importation as a result of advocacy efforts.

 Head of Canadian Drug Agency Transition Office announced

  • On April 1, Health Canada announced Susan Fitzpatrick as the Head of the Canadian Drug Agency Transition Office. Formally announced in the Federal Government’s 2019 Budget, the Canadian Drug Agency will be a new national drug agency building on existing provincial and territorial approaches and taking a coordinated approach to assessing effectiveness and negotiating prescription drug prices on behalf of Canadians.
  • ALS Canada has been in touch with Ms. Fitzpatrick, asking to meet to discuss ways the Canadian Drug Agency can be developed to meet the needs of the ALS community and reduce the time it takes for safe and effective therapies to be made available to Canadians.

Meetings with industry regarding access to therapies

  • In April, ALS Canada met with six different pharmaceutical companies who are in the process of researching and developing new ALS treatments.
  • Conversations focused on building relationships, highlighting the strengths of the Canadian ALS landscape and community, learning about the current state of their innovative research, and discussing how all parties can work together to ensure new therapies that are proven safe and effective can be made available to Canadians living with ALS as soon as possible.

Federal Updates

Federal Budget

  • On April 19, federal Finance Minister, Hon. Chrystia Freeland, tabled the Government of Canada’s 2021 Budget in the House of Commons.
  • While there were new investments in health and supports for the charitable sector, we were disappointed not to see any direct funding for CAPTURE ALS, which will strengthen clinical trials, accelerate therapeutic development, and encourage new medical R&D investment in Canada.
  • We had also hoped to see further progress and clarification on a framework for the development of a strategy for High-Cost Drugs for Rare Disease.
  • A select few of the health and scientific investments that may be relevant to the ALS community include:
    • A total $2.2 billion over seven years towards growing a vibrant domestic life sciences sector.
    • $250 million over three years, starting in 2021-22, to the Canadian Institutes of Health Research (CIHR) to implement a new Clinical Trials Fund.
    • $400 million over six years, starting in 2021-22, in support of a Pan-Canadian Genomics Strategy.
    • $29.8 million over six years, starting in 2021-22, to Health Canada to advance the government’s palliative care strategy.
    • $13.2 million over five years, beginning in 2021-22, with $2.6 million per year ongoing, to Health Canada to ensure that Canada’s medical assistance in dying framework is implemented consistently and with all appropriate safeguards.

Provincial Updates (Ontario)

New legislation to regulate Ontario PSWs

  • On April 27, the Government of Ontario introduced new legislation at Queen’s Park that, if passed, will create new measures to regulate parts of Ontario’s health care workforce, including personal support workers (PSWs), physician assistants, and behaviour analysts.
  • Entitled the  Advancing Oversight and Planning in Ontario’s Health System Act, 2021, the bill would “establish a new legislative framework to support greater uniformity of education and training standards for personal support workers and would build on their capacity to provide care services to the most vulnerable Ontarians, including children, older adults and people with disabilities,” according to the government’s press release.
  • ALS Canada has been advocating for improvements to the PSW workforce in Ontario for several years so that Ontario families living with ALS can have access to a better standard of home and community care that will meet their complex care needs.


Note to readers: This blog is a source of information for the ALS community that provides an overview of advocacy efforts and current affairs for Canadians affected by ALS. While there are many topics presented in this blog update, they don’t represent ALS Canada’s official position on any particular issue, nor indicate a complete list of ALS Canada’s advocacy priorities. Also note that we’re unable to share all details about certain engagements with industry stakeholders due to confidentiality reasons.

Posted in: Advocacy Update