Defeat Duchenne Canada and La Force DMD call for swift negotiations and timely access for Canadian families.
LONDON, ON, Oct. 1, 2026 /CNW/ -- Canada's Drug Agency (CDA-AMC) has issued a final recommendation to reimburse AGAMREE® (vamorolone), the first and only therapy approved in Canada for Duchenne muscular dystrophy.
While CDA-AMC's clinical conclusion was positive, its recommendation included a condition that vamorolone not be priced higher than prednisone, a decades-old generic corticosteroid used off-label to treat Duchenne. Defeat Duchenne Canada and La Force DMD recognize the need for public drug plans to consider value and affordability. However, we are concerned that this pricing condition could delay or limit access for Canadians living with Duchenne and set a negative precedent for future innovation and treatment advances in Duchenne and other rare diseases.
"The positive CDA-AMC recommendation is an important step, but we need to ensure that pricing negotiations do not become a roadblock to timely and equitable access to vamorolone," says Nicola Worsfold, Executive Director of Defeat Duchenne Canada and a Duchenne Mom.
"We urge all parties to work constructively toward a sustainable agreement that recognizes the clinical value of vamorolone, while ensuring that Canadian families can access this country's first approved drug for Duchenne -- a treatment we have been waiting many, many years for."
The final CDA-AMC recommendation follows a recommendation by the Institut national d'excellence en santé et en services sociaux (INESSS), which did not support reimbursement of vamorolone due to economic concerns but acknowledged the clinical value of vamorolone and its significance for people affected by Duchenne.
"Families in Quebec are encouraged by the acknowledgement of the clinical benefit of vamorolone by INESSS and the positive recommendation from CDA-AMC," says Marie-Catherine Du Berger, President of La Force DMD and Duchenne Mom.
"We hope this important progress will translate into timely access for those who may benefit from this treatment. Because innovation only matters when patients can access it in time to make a meaningful difference."
With CDA-AMC's final recommendation now issued, the process moves to the pan-Canadian Pharmaceutical Alliance (pCPA), where public reimbursement negotiations with the manufacturer will take place. Defeat Duchenne Canada and La Force DMD are calling on the pCPA and participating public drug plans to act with urgency and fairness to reach an agreement that enables eligible Canadians living with Duchenne to access vamorolone without further delay.
For people living with Duchenne, time is muscle and access to treatment cannot wait. While today's focus is on vamorolone, the broader need remains. Canadians living with Duchenne and their families need access to all appropriate Duchenne treatments, including the seven other therapies that are already available in other countries and new treatments moving through the development and regulatory pipeline. Defeat Duchenne Canada and La Force DMD will continue working with governments, public drug plans, healthcare professionals, and our families to help advance timely and equitable access to vamorolone and other Duchenne treatments across Canada.
Learn more: www.defeatduchenne.ca/advocacy
About Defeat Duchenne Canada
Defeat Duchenne Canada is the country's only national charity solely dedicated to ending Duchenne muscular dystrophy.
Our goal is to provide leadership in research, advocacy, and support to ensure every Canadian affected by Duchenne can live a long and active life.
Duchenne is a rare genetic disorder that affects 1 in 5,000 male births worldwide. Around the world, 20,000 children are diagnosed with Duchenne each year. The Canadian Neuromuscular Disease Registry (CNDR) estimates there are more than 800 boys and young men living with Duchenne in Canada. While this number appears small, Duchenne is the most common form of muscular dystrophy diagnosed in early childhood.
About La Force DMD
La Force DMD is a Quebec-based, parent-led charity dedicated to the Duchenne muscular dystrophy community. Founded in 2014 by Marie-Catherine Du Berger following her son's diagnosis, La Force DMD works to unite families across Quebec and advocate for timely and equitable access to new treatments.
SOURCE Defeat Duchenne Canada
Media contact: Rosalind O'Connell, National Director of Advocacy, Defeat Duchenne Canada, P: 613-650-7489, E: [email protected]
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