ALS Canada Advocacy Update – April-June 2023

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

• pCPA: On March 14, 2023, the pan-Canadian Pharmaceutical Alliance (pCPA) started the negotiation process for oral edaravone.
  • While this is a positive step forward, Canadians living with ALS do not have the time to wait the months it can take for negotiations to conclude.
  • 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.

Qalsody (tofersen)

• On April 25, 2023, the U.S. Food and Drug Administration (FDA) approved Qalsody (tofersen) for the treatment of SOD1-ALS under the Accelerated Approval pathway.
• ALS Canada developed an FAQ on Qalsody, which explores information on the therapy and discusses what this approval means to the Canadian ALS community.

Access to therapies

e-advocacy Campaign

• ALS Canada’s e-advocacy campaign focused on expedited and equitable access to approved ALS therapies is ongoing.
• The campaign calls on participants to email their provincial government and urges them to implement the solutions outlined in our position paper, The Time is Now, by reimbursing ALBRIOZA and oral edaravone without delay and ensuring criteria are in place that will allow anyone who could benefit from the therapy – as determined by their ALS clinician – to have public coverage.

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. 

Federal Updates

National Strategy for Drugs for Rare Diseases

• On March 22, the Federal Government announced the National Strategy for Drugs for Rare Diseases.
  • We are pleased to see this strategy move forward and hope it will be a significant step in building knowledge and improving access to therapies for people living with rare diseases, including the ALS community.
  • We remain committed to being a partner and working with the federal and provincial governments to establish rare disease pathways in each province while advocating for swift action to meet the urgent needs of people affected by ALS.

Government meetings

• On March 30, ALS Canada met with MP Heather McPherson and MP Francis Drouin, ALS Caucus Co-Chairs, to provide an update on the recent developments with respect to access to new ALS therapies.
• On April 24, ALS Canada met with MPP Nolan Quinn to discuss the need for Ontarians living with ALS to have expedited and equitable access to therapies.
• On May 15, ALS Canada, alongside a community member, met with MLA Brendan Macguire (Nova Scotia) to discuss the critical role provincial governments across Canada play to ensure people living with ALS have expedited and equitable access to therapies.
• On June 7, ALS Canada, alongside a community member, met with MPP Adil Shamji to discuss the challenges Ontarians living with ALS face.

ALS Awareness Month

• Federal Minister of Health, Jean-Yves Duclos, published a statement recognizing June ALS Awareness Month.
• On June 1, Sylvia Jones, Ontario’s Minister of Health, acknowledged June ALS Awareness Month and introduced ALS Society of Canada as visitors at the Legislative Assembly.
• On June 6, MPP Bob Bailey delivered a Members’ Statement in the Legislative Assembly acknowledging June as ALS Awareness Month.
• On June 6, MPP Dawn Gallagher-Murphy 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.