Defeat Duchenne Canada is pleased to share that the Canada’s Drug Agency (CDA) has issued a draft recommendation to reimburse vamorolone (AGAMREE) for the treatment of DMD in patients 4 years of age and older.

In this draft recommendation, the CDA is recommending that vamorolone be reimbursed by Canada’s public drug plans, provided specific conditions are met. While this is an encouraging and important step forward, this is not the final recommendation and does not yet mean the medication is publicly funded or available through provincial/territorial drug plans.

DDC has 10 business days to provide feedback on the draft recommendation, including input on certain conditions that we feel warrant further consideration. We are actively preparing our submission and will advocate to ensure the Duchenne community’s voice is reflected before the recommendation is finalized.

“This is an encouraging and important step forward. A positive draft recommendation moves us closer to public reimbursement, but there is still work ahead to ensure that the individuals and families who can benefit are able to access this treatment through their public drug plans. We are carefully preparing our feedback to help strengthen the final recommendation and keep this progress moving forward.”

Nicola Worsfold, Executive Director of Defeat Duchenne Canada and Duchenne Mom

Read the CDA’s Draft Recommendation below:

What Happens Next?

Step 1 – Draft Recommendation: The CDA issues a draft recommendation to reimbursement with conditions.

Step 2 (We are here) – Provide Input: DDC has ten business days to submit feedback on behalf of the community to help inform the final decision.

Step 3 – Final Recommendation Published: The CDA will review input and release its final recommendation. Note: CDA recommendations are not obligatory. However, provinces and territories will typically follow them closely.

Step 4 – Price Negotiation & Provincial/Territorial Decisions: If the final recommendation remains positive, the pan-Canadian Pharmaceutical Alliance (pCPA) will negotiate pricing on behalf of provinces and territories. Each province and territory must then decide whether to list the drug on its public formulary.

This draft recommendation signals meaningful progress. However, access will ultimately depend on successful negotiations and provincial/territorial decisions.

Your Voice Matters

We encourage families and individuals living with Duchenne to:

• Read the full draft recommendation above.
• Join us on Rare Disease Day (link below) to understand how you can continue to advocate as we move towards reimbursement.
• Learn how to add your voice through our advocacy toolkit and webinar resources.

This is advocacy in action. Together, we can continue moving forward toward equitable and affordable access for Canadians living with Duchenne.