Healthcare Policy

Healthcare Policy 19(4) May 2024 .doi:10.12927/hcpol.2024.27334

Federal Funding for Expensive Drugs for Rare Diseases: How Do We Pick and Choose?

Joel Lexchin and Sandra Sirrs


The number of expensive drugs for rare diseases (EDRDs) approved by Health Canada and their contribution to healthcare costs has been rapidly increasing. The federal government has announced a 3-year funding commitment of $1.4 billion dollars for EDRDs, but principles need to be developed for how that funding will be allocated, especially in cases where insufficient data are available to guide decision-making. Here, we review the role of evidence quality in making choices and draw on the experience from other countries to put forward 5 principles about how the money should be spent.



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