ALS Canada Advocacy Update – December 2021

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.

Access to therapies

AMX0035 | CADTH

• In late October the Canadian Agency for Drugs and Technology in Health (CADTH) has posted a call for patient input on AMX0035.
• ALS Canada will be preparing a submission reflecting the perspectives of the ALS community and has invited the community to contribute to the submission by sharing their experiences through a survey.
• More than 600 Canadians participated in the survey, the results of which will inform the patient input submission to CADTH.
• The ALS clinical community will also be providing a written submission.

The Time is Now | ALS Position Paper & e-Advocacy Campaign Update

• The Time is Now position paper, which outlines two pathways for more timely and equitable access to approved ALS therapies via reimbursement, continues to gain momentum. As of December 7, 2021, more than 7,000 Canadians have participated in the e-campaign, telling their elected officials to help ensure that the solutions outlined in the paper are implemented.

Edaravone

• On October 8, Health Canada confirmed that people living with ALS can continue to access Edaravone through personal importation beyond October 1, 2021 until April 1, 2022.
• On November 23, the province of Prince Edward Island (PEI) announced it has listed Radicava (edaravone) on the public formulary under Special Authorization as a treatment for ALS. With this announcement, all provinces and territories across Canada – as well as Veterans Affairs Canada and Indigenous Services Canada – are now covering Radicava through their public formularies.

Health Canada ALS Patient Listening Session:

• ALS Canada joined five community advocates to participate in the first ever Patient Listening Session on the topic of ALS, hosted by Health Canada’s Office of Pediatrics and Patient Involvement (OPPI).
• OPPI is piloting the FDA’s patient listening session model to identify the components that would work best in the Canadian context, and the ALS community has been asked to support this effort.

Federal Updates

Government Meetings

• Shortly after the September 2021 federal election, ALS Canada began re-engaging with re-elected members of the all-party ALS Caucus  to brief them on recent developments with respect to access to new ALS therapies:
  • Nov. 16 – CEO Tammy Moore met with MP Francis Drouin (Glengarry—Prescott—Russell), Co-Chair of the ALS Caucus.
  • Nov. 3 – Joined by ALS community advocates Mike and Carmen Cels, CEO Tammy Moore and Public Affairs Manager Lauren Poplak met with MP Pam Damoff (Oakville North—Burlington).
  • Oct. 14 – Director of Community Services Kim Barry had a call with Minister Mona Fortier (Ottawa—Vanier), President of the Treasury Board.
• At these meetings, we raised the important need for the ALS community to have access to new therapies as quickly as possible, our concern with the Health Canada review decision for AMX0035, and our belief that all ALS therapies need to be granted priority review status by Health Canada going forward.

Post-Election | New Cabinet Appointments & Next Steps

• On October 26, a new federal Cabinet was sworn in, with the Hon. Jean-Yves Duclos appointed as the Minister of Health and the Hon. Carolyn Bennett as Minister of Mental Health and Addictions and Associate Minister of Health.

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.