Jesse's Journey Foundation

Defeat Duchenne. Change Lives.

Advocacy

As the leading Duchenne organization in Canada, we are here to serve you – Duchenne families – by representing your voice and diverse needs, as we advocate for the best access to healthcare and therapies with government, industry and the medical community.

Our priority: timely access to affordable treatments in Canada.

We are achieving this by:

#1: Working with Health Canada, our clinicians, and manufacturers to gain access to therapies not yet approved in Canada.

Click here to read our letter to Health Canada’s Special Access Program (SAP) regarding deflazacort supply interruption.

#2: Advocating for fast decision making in order to speed up access to medicines in Canada.

Click here to read our letter to Health Canada and a summary of our 2019 patient survey results.

#3:  Advocating against price restrictions imposed by the PMPRB (Patented Medicine Prices Review Board) to ensure that when therapies do become available, they’re affordable for all families.

Click here to read our consultation to the PMPRB.

What is PMPRB?

The PMPRB stands for Patented Medicine Prices Review Board, an independent quasi-judicial government body to inform and protect Canadians by regulating the price of patented medicines sold in Canada.

The PMPRB has proposed new changes that would lower drug prices to levels that would discourage or delay pharmaceutical companies from bringing new rare disease medicines into Canada. That means severely limiting and delaying access to treatments for children and young adults living with Duchenne.

We believe Canadians deserve life-saving and life-altering treatments, but restrictive pricing is making it impossible to get new therapies in Canada. In response, Jesse’s Journey has partnered with a variety of leading healthcare groups to advocate for the Duchenne community:

  1. Jesse’s Journey has partnered with Muscular Dystrophy Canada (MDC) and the Neuromuscular Disease Network for Canada (NMD4C) to provide a collective response to the PMPRB draft guidelines – read the full release here.
  2. Jesse’s Journey sits on the Board of Directors for the Canadian Organization for Rare Diseases (CORD) and fully supports their submission to PMPRB on the revised draft guidelines in collaboration with the Canadian Agency for Drugs and Technologies in Health (CADTH) – read the full release here.
  3. Jesse’s Journey participated and supports the Fight for Our Lives campaign, advocating for solutions to lower drug prices without harming patients – learn more here.

PMPRB Next Steps

On October 23, 2020, the PMPRB published the final version of the PMPRB Guidelines that operationalize the amended Patented Medicines Regulations, which come into force on January 1st, 2020. Our team is taking the time to carefully review the document and will provide an update for the Duchenne community soon.

What to learn more about our advocacy work or get involved? Contact:

Nicola Worsfold

Director of Advocacy and Research

nicola@jessesjourney.com