With Rare Disease Day fast approaching, the federal government has an opportunity to make a significant difference in the lives of the one in 12 Canadians who suffer from a rare disease by delivering on its long-awaited national strategy for rare diseases.
Despite the federal government’s 2019 commitment to support Canada’s first-ever national strategy for rare diseases, patients are still waiting for that strategy to materialize. Action is urgently needed to make a tangible difference in the lives of patients and their loved ones.
Currently, only 60 per cent of rare disease treatments available make it into Canada, and most get approved up to six years later than in the U.S. or Europe, according to the Canadian Organization for Rare Disorders (CORD). Canada is the only G7 country without an existing national approach to rare diseases.
A comprehensive Canadian rare disease strategy should include an accelerated drug review, approval and access pathway, a standard definition for what constitutes a ‘rare disease’ in line with our international peers, the use of real-world data, and rare disease centres of excellence. These elements within a national strategy would help address the persistent gaps and challenges across the country in diagnosing, monitoring, and treating rare disease patients in an efficient and effective way.
Innovative Medicines Canada is committed to working with governments and other health stakeholders to ensure a national rare disease strategy makes a real difference in patients’ lives.