ALS Canada Advocacy Update – October-December 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

RADICAVA Oral suspension (edaravone)

• Provincial Reimbursements: As of November 7, 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)
  • Newfoundland and Labrador: Under the Newfoundland and Labrador Prescription Drug Program (NLPDP) (special authorization)
  • Nova Scotia: Under the Nova Scotia Formulary (exceptional status)
  • Ontario: Under the Ontario Drug Benefit Formulary (Exceptional Access Program)
  • Prince Edward Island: Under the Prince Edward Island (PEI) Pharmacare Formulary (special authorization)
  • 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

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.

Provincial Updates

Regional 2024 Pre-Budget Consultations

• ALS Canada participated in the regional pre-budget consultation hosted by the Ontario Ministry of Finance in Richmond Hill and Vaughan, calling on the provincial government to implement the Ontario Provincial ALS Program in Budget 2024 to ensure Ontarians living with ALS and their loved ones receive the care and support they rightly deserve.
  • ALS Canada will continue to engage with the Ontario government as part of the pre-budget consultation process through various mechanisms available.

Ontario Legislature Adjournment

• On December 14, the Ontario Legislature adjourned for the year. It is scheduled to resume sitting on February 20, 2024.

Government Meetings

• In October, ALS Canada, alongside a community member, met with the Non-Insured Health Benefits (NIHB) program to share the challenges faced by the First Nations community with access to healthcare for a timely ALS diagnosis and equitable access to therapies
• Throughout November and December, ALS Canada met with several Ontario MPPs to discuss a coordinated solution to ensure Ontarians living with ALS get the support for the vital care they require:
  • MPP Dawn Gallagher Murphy, Parliamentary Assistant to the Minister of Health
  • MPP Christine Hogarth, Parliamentary Assistant to the Solicitor General
  • MPP Lorne Coe, Parliamentary Assistant to the Premier
  • Office of the Minister of Seniors and Accessibility, Raymond Cho
  • Office of the Minister of Health, Sylvia Jones
  • Office of the Minister of Labour, Immigration, Training and Skills Development, David Piccini
  • Office of the Premier, Doug Ford
  • Office of the Minister of Finance, Peter Bethlenfalvy

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.