06/22/2026
Approval Does Not Equal Access: Why We Must Act Now
When a breakthrough treatment for a neuromuscular disorder is announced, it brings a surge of hope to the community. We often say that for these conditions, "time is muscle"—every day matters because once muscle strength and function are lost, it is often permanent and irreversible.
However, there is a painful reality in Canada that many are unaware of: Health Canada approval does not automatically mean a patient can access that treatment.
The Long, Fragmented Journey
Many people assume that once a drug is approved, it is immediately available to those who need it. In reality, that is only the beginning of a complex, multi-year process. Even after a treatment is deemed safe and effective by Health Canada, it must still face:
Health Technology Assessments: A review to determine clinical benefit and cost-effectiveness.
Price Negotiations: A separate process with the pan-Canadian Pharmaceutical Alliance (pCPA) that can take months or even years.
Provincial Funding Decisions: Because healthcare is managed provincially, each province and territory decides independently whether to fund the treatment, who qualifies, and what criteria patients must meet.
This fragmented pathway is why the average time from Health Canada submission to public provincial listing for neuromuscular therapies is approximately 900 days—nearly 2.5 years.
The "Postal Code" Lottery:
Because provinces make their own decisions, your location can determine your treatment options. Two Canadians living with the same condition can have vastly different access to care depending on which province they live in.
Some provinces may delay listing, impose highly restrictive eligibility criteria, or require patients to lose a certain level of function before they qualify, often causing patients to "age out" or deteriorate while waiting for a decision that may never come.
Why This Petition Matters:
We are not anti-review or anti-science; we believe in safe, evidence-based care. However, our current system is not designed for the reality of rare, progressive diseases.
We are advocating for a faster, fairer, and more equitable system where:
Rare disease policies are modernized.
Patient experience is at the heart of decision-making.
Your postal code does not dictate your quality of life.
Please take a moment to stand with the neuromuscular community by signing our petition today. Your support helps us push for the urgent changes needed to ensure no one loses precious function while waiting for access.
Sign here:
Create a Fast-Track Approval Pathway for Neuromuscular Treatments in Canada
