Canada’s Drug Agency (CDA-AMC) has issued a final positive recommendation to reimburse AGAMREE® (vamorolone), the first and only therapy approved in Canada for Duchenne muscular dystrophy. This is an important milestone for our community. Now we need to ensure everyone who may benefit from vamorolone can access it through public drug plans.
This is encouraging news, but it also raises a concern.
The recommendation states that vamorolone should 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.
What happens next
Reimbursement negotiations now move to the pan-Canadian Pharmaceutical Alliance (pCPA).
Defeat Duchenne Canada and La Force DMD are calling on the pCPA and participating public drug plans to pick up negotiations with the manufacturer and act with urgency and fairness to reach an agreement that enables eligible Canadians living with Duchenne to access vamorolone without further delay.
Stay informed and get involved
- Join our webinar on Thursday, October 22, from 6-7 p.m. ET to learn more about what this recommendation means and what comes next
- Explore our new Advocacy Hub for updates, resources, and ways to take action: defeatduchenne.ca/advocacy