ALS Canada Advocacy Update – July-September 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

ALBRIOZA

• pCPA: On June 15, 2023, Amylyx and the pan-Canadian Pharmaceutical Alliance (pCPA) have successfully concluded negotiations for ALBRIOZA and entered into a Letter of Intent (LOI) for the terms and conditions under which ALBRIOZA would qualify for reimbursement through federal, provincial, and territorial public drug plans in Canada.
  • It is now up to individual provinces and territories to make a reimbursement decision for the therapy.
• Provincial Reimbursements: As of September 1, 2023, the following provinces have made decisions regarding the public reimbursement of ALBRIOZA:
  • Alberta: Under the Alberta Drug Benefit List
  • British Columbia: Under the British Columbia PharmaCare Formulary (special authorization)
  • Manitoba: Under the Manitoba Drug Benefits and Interchangeability Formulary (special authorization)
  • New Brunswick: Under the New Brunswick Drug Plan (NBDP) formulary
  • Newfoundland and Labrador: Under the Newfoundland and Labrador Prescription Drug Program (NLPDP)
  • Nova Scotia: Under the Nova Scotia Pharmacare Program
  • Ontario: With criteria under the Ontario Drug Benefit Formulary (Exceptional Access Program)
  • Québec: With criteria under the Régie de l’assurance maladie du Québec (RAMQ) formulary (special authorization)
  • Saskatchewan: Under the Saskatchewan Drug Plan Formulary

RADICAVA Oral suspension (edaravone)

• pCPA: On July 20, 2023, Mitsubishi Tanabe Pharma Canada Inc. and the pCPA have successfully concluded negotiations for RADICAVA Oral Suspension (edaravone), also known as oral edaravone, and entered into a Letter of Intent (LOI) for the terms and conditions under which the therapy would qualify for reimbursement through federal, provincial, and territorial public drug plans in Canada.
  • It is now up to individual provinces and territories to make a reimbursement decision for the therapy.
• Provincial Reimbursements: As of September 1, 2023, the following provinces have made decisions regarding the public reimbursement of RADICAVA Oral Suspension:
  • Alberta: Under the Alberta Drug Benefit List
  • British Columbia: Under the British Columbia PharmaCare (special authority)
  • New Brunswick: Under the New Brunswick Drug Plan (NBDP) formulary (special authorization)
  • Nova Scotia: Under the Nova Scotia Formulary (exceptional status)
  • Ontario: Under the Ontario Drug Benefit Formulary (Exceptional Access Program)
  • Quebec: Under the Régie de l’assurance maladie du Québec (RAMQ) formulary (special authorization)
  • Saskatchewan: Under the Saskatchewan Drug Plan Formulary (Exception Drug Status)

Access to therapies

pCPA Temporary Access Process (pTAP)

• ALS Canada participated in the pan-Canadian Pharmaceutical Alliance (pCPA)’s stakeholder engagement session to provide feedback on the draft conditions for the pCPA Temporary Access Process (pTAP) and highlighted the importance of implementing an expedited, transparent, and inclusive reimbursement process to address the needs of people living with ALS.
  • ALS Canada will continue to work with the pCPA to lay the groundwork for swift reimbursement decisions to help ensure equitable access in a timeframe that meets the urgency of this disease.

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 or territorial government and urges them to implement the solutions outlined in our position paper, The Time is Now, by reimbursing ALBRIOZA and RADICAVA Oral Suspension (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 ALBIOZA and RADICAVA Oral Suspension (edaravone) 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

2024 Federal Pre-Budget Consultation

• ALS Canada submitted to the House of Commons Standing Committee on Finance as part of their annual pre-budget consultation. Our submission recommended that the Government of Canada invest $35 million over five years to expand CAPTURE ALS from a pilot initiative to a world-leading, self-sustainable Open Science platform.

New Cabinet Appointments

• On July 26, a new federal Cabinet was sworn in, with the Hon. Mark Holland appointed as the Minister of Health and the Hon. Ya’ara Saks as Minister of Mental Health and Addictions and Associate Minister of Health.

Government meetings

• On June 26, ALS Canada, alongside a community member, met with the Hon. Sylvia Jones, Ontario Minister of Health, to discuss the needs of people living with ALS in Ontario and the critical role the Ontario Government plays in taking action to make a difference for families affected by ALS.
• On July 5, ALS Canada, alongside a community member, met with the Ontario Ministry of Health bureaucracy to discuss the solutions outlined in ALS Canada’s The Time is Now position paper and 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.