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


  • CADTH: On August 8, the Canadian Agency for Drugs and Technology in Health (CADTH) released its final recommendations on ALBRIOZA.
    • In late June, ALS Canada and the Canadian ALS Clinical community both provided feedback in response to the CADTH’s draft reimbursement recommendations for ALBRIOZA to help ensure coverage criteria reflect the realities of the diagnosis and treatment of ALS. 
    • The focus of the feedback was on challenges surrounding the proposed eligibility criteria. The final recommendations reflected a nuanced change to the suggested reimbursement conditions, as requested by ALS Canada in our feedback. 
  • INESSS: On July 27, L’institut national d’excellence en santé et en services sociaux (INESSS), the agency responsible for Quebec’s reimbursement recommendations, issued a recommendation of “do not reimburse” for ALBRIOZA. 
    • ALS Canada sent a letter to the Quebec Minister of Health in late July encouraging a reimbursement decision from INESSS on ALBRIOZA.  
    • The ALS Society of Quebec and ALS Canada continue to advocate for the Minister of Health to reconsider and provide a positive reimbursement recommendation for ALBRIOZA.
  • pCPA: As of August 9, ALBRIOZA is on the list of drugs in negotiations with the pan-Canadian Pharmaceutical Alliance (pCPA).  
    • In July, ALS Canada met with the pCPA leadership team to discuss the need for an expedited negotiation process for ALBRIOZA.  
    • Following the meeting – and aligned with our advocacy – we are encouraged to see that pCPA started the negotiations a day after the final CADTH recommendations were released 
  • Market access: In late July, ALBRIOZA (AMX0035) became commercially available in Canada for people living with ALS. 
  • Frequently Asked Questions (FAQ) Page: ALS Canada developed an FAQ on ALBRIOZA to empower our community to make informed decisions about the treatment. 

Access to therapies

Tofersen FDA priority review 

  • In July, Biogen announced that the U.S. Food and Drug Administration (FDA) has accepted a New Drug Application (NDA) for tofersen under a priority review.  

Final Report on Proposed framework for a potential Pan-Canadian Formulary | CADTH   

    • CADTH released its final report on Proposed Framework for a Potential Pan- Canadian Formulary. 
    • The report is intended to contribute to current conversations on potential pan-Canadian formulary within a national pharmacare program and the issues related to access and affordability. 
    • ALS Canada contributed to the consultation for the final report as a member of the Health Charities Coalition of Canada (HCCC) and highlighted the importance of making innovative medicines accessible to Canadians living with ALS in an affordable, timely and equitable manner.    

New Web Page | ALS treatments in the Canadian drug access processes 

  • ALS Canada recently launched the ALS Treatments in the Canadian Drug Access Processes page. 
  • This page provides information on how long it takes for a drug to make its way through the drug access processes in Canada and how ALS Canada is advocating to change that reality. 

Provincial Updates

Post-Election | New Cabinet Appointments

  • On June 24, a new provincial cabinet was sworn into the Ontario Legislature. The Hon. Sylvia Jones is appointed as the Minister of Health and Hon. Paul Calandra is appointed as the Minister of Long Term Care. 
Posted in: Advocacy Update