ALS Canada Advocacy Update July-September 2024

This 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

Annual Premiers’ Conference

• At the annual Premiers’ conference, attended by all 10 provincial and three territorial leaders, Ontario Premier Doug Ford made an important announcement highlighting his focus on faster access to approved therapies, a step that resonates deeply with the ALS community and our advocacy efforts.
• We are hopeful that this commitment will translate to real change for all Canadians, including those living with ALS, by improving access to much-needed treatments.
• We will continue to advocate for the Canadian drug access pathway to become streamlined, more transparent and inclusive to address the needs of people living with ALS.

Canada’s Drug Agency Strategic Planning Process

• ALS Canada participated in Canada’s Drug Agency (CDA)’s Strategic Planning Town Hall, contributing to the development of the agency’s strategic plan for the next 3 years. We emphasized the role of collaboration and transparency throughout the health technology assessment process and the importance of ensuring it is inclusive, responsive and meets the needs of the patient community, including people living with ALS.

Canada’s Drug Agency – Symposium 2024

• ALS Canada attended Canada’s Drug Agency – Symposium 2024 on September 4-6. The symposium was a valuable opportunity to learn about the developments within the health technology assessment landscape and bring forward the voices of the ALS community to help inform how lived experience can be better integrated.

Provincial Updates

Ontario Provincial ALS Program

• On March 26, 2024, Ontario’s Minister of Finance, Peter Bethlenfalvy, presented the province’s 2024 Budget.
• While the initial budget announcement did not explicitly include a $6.6 million investment to implement the recommendations outlined in the Ontario Provincial ALS Program, we are actively continuing our discussions with key ministries and stakeholders.
• Our ongoing conversations with the Ministry of Health are gaining depth and momentum. We appreciate your support as we work toward ensuring Ontarians living with ALS receive the care and support they rightly deserve.
  • We will continue to keep you informed of any developments.

Provincial Cabinet Shuffle

• Following a cabinet shuffle on July 30, 2024, Premier Doug Ford appointed MPP Anthony Leardi as the Parliamentary Assistant to the Minister of Health.
  • ALS Canada sent a congratulatory letter to MPP Leardi and requested an introduction meeting.

Federal Updates

2025 Federal Pre-Budget Consultation

• ALS Canada participated in the House of Commons Finance Committee’s 2025 Pre-Budget Consultation process. Building onto our past submissions and advocacy, our submission recommended that 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.

National Strategy for Drugs for Rare Diseases

• On July 23, British Columbia signed the National Strategy for Drugs for Rare Diseases (DRD) agreement to invest a total amount of $194 million over three years 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.
  • This is the first DRD agreement reached since the federal government announced its rare disease strategy in early 2023.
• We hope other provinces will follow British Columbia’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.

Funding for Promoting Early Access to Palliative Care

• The federal government announced $2.4 million in funding over three years to McMaster University to design programs and education materials to encourage earlier access to palliative care.
• ALS Canada has been working with the team at McMaster University on this initiative, which is critical to helping individuals living with ALS have the autonomy to make advanced care decisions about their current needs.
• Through this opportunity, ALS Canada, alongside the International Alliance of ALS/MND Associations, is providing feedback on tools that support individual decisions and help people living with a life-limiting illness by providing resources to support and guide questions around their care needs to the health care professionals.

Government Meetings

• Throughout the quarter, ALS Canada met with stakeholders from the Ontario government to discuss the implementation of the Ontario Provincial ALS Program to ensure Ontarians living with ALS and their loved ones receive the care and support they rightly deserve, including:
  • Office of the Minister of Health
  • Deborah Richardson, Deputy Minister of Health
  • Catherine Wang, Assistant Deputy Minister, Hospitals and Capital
  • Charmaine Williams, Associate Minister of Women’s Social and Economic Opportunity
  • John Fraser, MPP
  • Catherine Fife, MPP
• ALS Canada met with the new ALS Caucus Chair, MP Peter Fragiskatos, in August to discuss the caucus’s reinvigoration and future priorities.
• ALS Canada joined ALS Action Canada, ALS Quebec, and the Canadian ALS Alliance at Parliament Hill and met with the following government officials to raise awareness and advocate for access to therapies and research funding:
  • Yasir Naqvi, Parliamentary Secretary to the Minister of Health
  • Francis Drouin, MP
  • Judy Sgro, MP

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. We’re also unable to share all details about certain engagements with industry stakeholders due to confidentiality reasons.

You can read past advocacy updates here.