ALS Canada Advocacy Update, October – December 2025

Qalsody – Canada’s Drug Agency Final Reimbursement Recommendations

• On December 8th, Canada’s Drug Agency (CDA) shared its final reimbursement recommendation for Qalsody (tofersen).
  • ALS Canada took part in the feedback submission process after the draft recommendation was released in August, to ensure the voices of people living with ALS are included in decision-making. You can read our submission here.
  • The recommendation that CDA released is positive and in line with the feedback that the ALS Community submitted, accurately reflecting the realities of people living with SOD-1 ALS.
• Qalsody will now move to the next stage of the drug access process with the pan-Canadian Pharmaceutical Alliance (pCPA), where the public reimbursement negotiations will take place.

State of ALS Care Report by CDA

• Canada’s Drug Agency (CDA) is conducting an “ALS in Focus” report which is designed to signal decision-makers of the need to address ALS and provides an overview of the “state of the system” related to ALS care.
  • This report will include an analysis of access to therapies, clinical pathways, treatment options, and ethical considerations from a patient perspective. It is designed to act as a state of ALS in 2026 update.
  • ALS Canada is encouraged by CDA’s initiative and thoughtful engagement with community in taking this project forward. We are look forward to helping ensure that the lived experiences of the ALS community are reflected in the report’s insights and look forward to the findings of this important work.

2025 Federal Budget

• On November 4, the federal government released the 2025 Budget, and we are encouraged to see significant investments in attracting and retaining top research talent. These commitments align closely with the priorities of the ALS community and signal a meaningful opportunity to advance the Canadian Collaboration to Cure ALS.
  • You can find ALS Canada’s submission for the 2025 Pre-Budget Consultations here.
• ALS Canada, alongside the Canadian ALS community will continue to advocate for the unification and scaling of Canada’s ALS research efforts through the Canadian Collaboration to Cure ALS so that no Canadian is left behind in our progress toward a world free of ALS.

ALS Caucus

• On November 24, the ALS Caucus convened for the second time in 2025. The ALS Caucus is a non-partisan forum that brings MPs and Senators together to raise awareness and discuss solutions to the urgent needs of people affected by ALS.
• Alongside Daniel Knight, ALS researcher and bereaved caregiver, ALS Canada provided an overview of Canadian ALS Community’s federal ask and discussed upcoming parliamentary opportunities to advance the priorities of the ALS community.
• The ALS Caucus meeting was attended by:
  • MP Peter Fragiskatos (London Centre), ALS Caucus Co-Chair
  • MP Marie-Hélène Gaudreau (Laurentides—Labelle), ALS Caucus Co-Chair
  • MP Kurt Holman (London—Fanshawe)
  • MP Ernie Klassen (South Surrey—White Rock)

• From October to December, ALS Canada met with several government officials to discuss the ALS Community’s call to invest in the Collaboration to Cure ALS:
  • Ritu Banerjee, Assistant Deputy Minister at Health Emergency Readiness Canada (HERC)
  • Office of the Minister of Health, the Hon. Marjorie Michel