This 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 provincial (Ontario) levels of government.

Access to Therapies

National Strategy for Drugs for Rare Diseases

  • Alberta and Newfoundland and Labrador signed a bilateral agreement with the federal government under the National Strategy for Drugs for Rare Diseases (DRD).
  • The provinces will receive its share of the three-year $1.4 billion promised by the federal government to improve access to new drugs for rare diseases for its residents and to support enhanced access to existing drugs, early diagnosis, and screening for rare diseases:
  • We hope other provinces will follow British Columbia, Alberta and Newfoundland and Labrador’s lead. As we continue our advocacy, we will work with the federal and provincial governments to ensure that this process remains transparent, and stakeholder engagement is integrated every step of the way.

Therapeutics Updates

Discontinuation of Radicava IV (edaravone)

  • Mitsubishi Tanabe Pharma Canada announced their decision to discontinue RADICAVA IV (edaravone), an intravenous infusion treatment for ALS, as early as April 1, 2025. This decision was made as most patients on the therapy have already been transitioned to the RADICAVA Oral Suspension, a liquid form of the therapy administered orally or via a feeding tube, demonstrating similar efficacy to RADICAVA IV.
  • Eligible patients can continue to access RADICAVA Oral Suspension, a liquid formulation of the therapy taken either orally or through a feeding tube, which was approved by Health Canada in November 2022 and is available in all provinces and territories through their public formularies.

Provincial Updates

Ontario Provincial ALS Program

  • On October 30, 2024, the Ontario government announced their commitment of $13 million over three years in the 2024 Fall Economic Statement to support the Ontario Provincial ALS Program.
    • In collaboration, ALS Canada, with Simon Kuzyl, Patient Care Manager, and Dr. Lorne Zinman, Director of the ALS Clinic at Sunnybrook Health Sciences Centre, and the regional ALS Clinics in Ontario (Hamilton, Kingston, London, Ottawa, and Toronto) have advocated for this program since 2022.
  • This pivotal investment represents a meaningful commitment from the provincial government to address the urgent and evolving needs of people affected by ALS. The program will deliver vital services aligned with the best practice model of care to provide better health outcomes for the 1,400 Ontarians living with ALS, supporting their independence, safety, and dignity while reducing stress on Ontario’s healthcare system by helping prevent unnecessary hospitalizations and emergency visits.
  • ALS Canada will continue collaborating with the Government of Ontario for policies and investments that create lasting change and improve the lives of people affected by ALS today and in the future.

Federal Updates

FINA 2025 Pre-Budget Consultations – CAPTURE ALS

  • On December 15, the Standing Committee on Finance presented its report on the Pre-Budget Consultations In Advance Of The 2025 Budget.
  • We are pleased to share that ALS Canada’s recommendation for “the Government of Canada invest $35 million over five years to expand CAPTURE ALS from a pilot initiative to a world-leading, self-sustainable Open Science platform” was included in the report.
    • Recommendation 123: Invest to expand CAPTURE ALS from a pilot initiative to a world-leading platform to enable Canadian and global researchers to understand why people experience ALS symptoms and progression differently and, in turn, help identify treatment targets, support earlier diagnosis, strengthen clinical trials, reduce economic burden associated with the disease and improve the quality of life for the more than 4,000 Canadians affected by ALS.
  • This means that the committee prioritized this from other asks from all Pre-Budget submissions, highlighting our advocacy efforts. However, it is important to note that this does not guarantee inclusion in the final budget tabled by the Ministry of Finance.
  • We extend our gratitude to the Committee for recognizing the significance of this recommendation and will continue to advocate to the federal government for investment in critical research towards a world free of ALS.

CNDR Funding

  • The Canadian Neuromuscular Disease Registry (CNDR) has received funding from Canada’s Drug Agency (CDA) to improve the country’s rare disease datasets. This funding from CDA is part of the investment allocated by the federal government’s National Strategy for Drugs for Rare Diseases.

 

 

Note to readers: This update 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 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. We’re also unable to share all details about certain engagements with government and industry stakeholders due to confidentiality reasons.

You can read past advocacy updates here.

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