On November 12, Max’s Big Ride and his partners are relaunching Not So Rare campaign and petition. It was bad before. With the pandemic, now it’s worse. People afflicted with a rare disease have to navigate an overwhelmed health-care system. Forced to endure delays for the care they need to survive and thrive.
MORE THAN EVER, IT’S TIME!
Nowadays three million Canadians suffering from rare diseases keep on struggling to get a proper structure in our health system, in order to get the basic care they need to survive. The COVID-19 outburst has made things worse. Not only are they now in higher danger of suffering severe complications and dying if they’re infected by the Virus, but they also have to face a highly congested healthcare system focused on the pandemic. This means pushing back vital treatment. treatments or exams and threatening their lives even further more.
Canada is one of the few developed countries without a national rare diseases strategy to guide diagnosis, treatment and management of rare diseases. A national strategy for rare diseases would support a plan for:
- Early diagnosis
- Faster access to promising new therapies
- Fair and equal access to supportive care and effective disease management strategies
- Ending the inefficient, two-tiered, federal-provincial system for drug marketing approval and reimbursement of costs for orphan drugs