What Is Canada’s Rare Drug Challenge?

Patients in Canada with rare diseases have worse access to essential medicines

• When compared to Canadians with other diseases!
• When compared to rare disease patients in other countries!

Why Canada’s Rare Drug Challenge?

• Canada is STILL the only developed country without an Orphan Drug Policy
• Canada’s public drug plans list only about 30 – 40 % of rare disease therapies approved by Health Canada
• Canada approves only about 60% of rare disease therapies … and up to 8 years later than elsewhere
• Private drugs are increasingly denying coverage for rare diseases … claiming “pre-existent” conditions
• Unlike 60+ other countries, Canada does not have a government-approved Rare Disease Strategy … there are no national standards for newborn screening and genetic testing … so it can take more than 7 years to get a diagnosis and get to a specialist
• CORD launched Canada’s Rare Disease Strategy in 2015, which has helped drive provincial health systems and the federal government to action over the past seven years

We need the follow-through: formal adoption of Canada’s Rare Disease Strategy by the federal Prime Minister and provincial Premiers!

Canada from “Worse to First” in 2022!

• The Canadian government committed $1 billion to set up Canada’s 1st Rare Disease Drug Strategy by 2022
• With a modernized approval process, patients will get access to life-altering drugs when needed
• Improved rare disease infrastructure means patients get a timely diagnosis and specialty care to avoid disability and early death

The provinces need to step up and use these new funds to benefit Canadians with rare diseases

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