Submission to Provincial and Federal Government Representatives 

Building on our ALS Day on the Hill in September 2024, ALS Action Canada delivered a statement in direct response to the Federal Government’s 2023 announcement of a $1.5 billion National Strategy for Drugs for Rare Diseases, delivered to provincial and federal leaders. We acknowledged that while the announcement was promising, the needs of the ALS community remain largely unmet by its current implementation. We stressed three key issues:

1. Time is a critical factor for ALS patients. After Health Canada approval of a drug, waiting periods for drug coverage — up to 18 months or more — are unacceptably long and diminish the potential benefits of these treatments.
2. Challenges in care access. ALS patients face significant barriers to affordable and adequate home and institutional care, with access varying widely across provinces.
3. Diagnostic delays. Delays in diagnosis and access to treatment significantly hinder ALS patients’ ability to benefit from available interventions.

YOU can download and customize the letter, “Urgent Need for Enhanced ALS Care, Research Funding, and Access to Treatment“. 

Share with your networks and representatives of provincial and federal government to compel action on ALS.