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

Oral edaravone

  • CADTH: In January, The Canadian Agency for Drugs and Technology in Health (CADTH) released its final reimbursement recommendations on oral edaravone with a recommendation to reimburse with conditions. This is another critical step in establishing an environment where Canadians living with ALS have access to multiple available therapies. 
    • Read ALS Canada’s feedback in response to the draft recommendations. 
  • INESSS: L’institut national d’excellence en santé et en services sociaux (INESSS), the agency responsible for Quebec’s reimbursement recommendations, released its final reimbursement recommendations on oral edaravone with a recommendation to reimburse with conditions.   
  • Market availability: In February, oral edaravone became commercially available in Canada for people living with ALS, meaning that clinicians are able to prescribe the therapy.  
    • The therapy has not yet started negotiations under pCPA or at the provincial level to determine whether it will be covered publicly.  
    • ALS Canada will continue to work with the pCPA and the provincial drug programs to lay the groundwork for swift reimbursement decisions to help ensure equitable access in a timeframe that meets the urgency of this disease. 

Access to therapies

Advocacy in a Box Toolkit 

  • To continue empowering your advocacy efforts for the urgently needed solutions outlined in The Time is Now position paper, we’ve launched a new Advocacy-in-a-Box toolkit that contains resources to support advocacy to provincial governments for swift and equitable reimbursement of Health Canada approved therapies.  
  • Grounded in The Time is Now position paper, the toolkit highlights the ALS community’s experience with Albrioza as an example of how Canada’s current approval and reimbursement processes do not meet the urgent needs of people living with ALS. 

PMPRB Regulations

  • Following the consultation launched in October, the Patented Medicine Prices Review Board (PMPRB) announced that the proposed updates to the guidelines would not be implemented. Interim Guidelines issued on August 18, 2022, will remain in place until further notice. 
    • Read ALS Canada’s feedback on the consultation. 
    • Read ALS Canada’s letter to Health Minister Duclos as a Protect Our Access coalition member. 

Provincial updates

2023 Ontario Pre-Budget Submission

  • In February, ALS Canada participated in the Ontario Government’s 2023 budget consultation. In our submission, we call on the Ontario Government to eliminate barriers preventing Ontarians from having timely, equitable and affordable access to approved ALS treatments and to establish an Ontario ALS Program that will reduce the burden on our healthcare system and improve the standard of care provided to people living with ALS. 

Rare Disease Day

  • On February 28, ALS Canada attended the Rare Disease Day 2023 Breakfast Reception at Queen’s Park hosted by the Canadian Organization for Rare Disorders (CORD) to start a dialogue about how the Ontario government can collaborate on the development of a provincial rare disease strategy to ensure people living with rare diseases can access new and emerging therapeutics in a timely and equitable way. 

Government meetings

  • On January 27, ALS Canada met with MP Heather McPherson, ALS Caucus Co-Chair, to provide an update on the recent developments with respect to access to new ALS therapies. 
  • On February 1, ALS Canada met once again with the pan-Canadian Pharmaceutical Alliance (pCPA) to discuss the status of ALS therapies in negotiations and reiterated the critical need for the Canadian ALS community to have equitable access to approved therapies. 
  • On March 13, ALS Canada met with MPP Chris Glover to discuss the need for Ontarians living with ALS to have expedited and equitable access to therapies. 

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.