ALS Canada Advocacy Update – April-June 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.

Therapeutics updates

ALBRIOZA (AM00X35)

• Amylyx Pharmaceuticals announced that they have started a process with Health Canada to discontinue the marketing authorization for ALBRIOZA. This means that ALBRIOZA will no longer be available for new patients in Canada.   
  • ALBRIOZA was approved by Health Canada under the Notice of Compliance with Conditions (NOC/c) pathway in 2022.
  • Amylyx’s decision to remove ALBRIOZA from the market is based on the recent PHOENIX trial results of AMX0035, marketed as ALBRIOZA in Canada and RELYVRIO in the United States, which failed to show an effect on primary and secondary outcome measures. 

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 conversations 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

• On June 6 2024, Ontario Premier Doug Ford shuffled his cabinet. Hon. Natalia Kusendova-Bashta is appointed as the new Minister of Long-Term Care. 

Federal Updates

Letter to the Minister of Transport 

• ALS Canada sent a letter to Federal Minister of Transport, the Honourable Pablo Rodriguez, highlighting the urgent need for accessible air travel for Canadians who rely on mobility devices like wheelchairs, including people living with ALS, and advocating for equitable access to air travel for all.  
  • Read our letter. 

Government Meetings

• On April 3, ALS Canada met with Supriya Sharma, Chief Medical Advisor and Jeffrey Skene, Director, Bureau of Cardiology, Allergy and Neurological Science at Health Canada to discuss the ALS therapeutic pipeline. 
• Throughout the quarter, ALS Canada met with stakeholders from the Ontario Ministry of Health, 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.

ALS Awareness Month

• On June 4, Sylvia Jones, Ontario’s Minister of Health introduced ALS Society of Canada as visitors at the Legislative Assembly and raised point of order for unanimous consent to allow members to wear pins in recognition of June being ALS Awareness Month at the Legislative Assembly. 

• Throughout June, MPs and Ontario based MPPs voiced their support of people affected by ALS through videos published on ALS Canada’s social media channels. 

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.