Rare diseases affect only a small number of Canadians, but a lack of adequate testing and treatment reveals some of the key weaknesses in our health care system.

These illnesses – which affect about one in 12 Canadians – raise hard questions about health care costs, access, and fairness, and test how well Canada’s fragmented health governance systems can adapt to new challenges.

For a closer look at Canadian rare disease policy, Macdonald-Laurier Institute Senior Fellow John Adams joins Inside Policy Talks. Adams is a management consultant and one of Canada’s leading advocates for patients with rare diseases. Adams is the co-founder of CanPKU and chair of the Best Medicines Coalition, which represents millions of Canadian patients. His personal journey as a parent and caregiver for his son, who has a rare disease, has left Adams with unique insights on drug access, rare disease policy, and health care reform.

On the podcast, he tells host Shawn Whatley, a physician and senior fellow at MLI, that one of the key steps Canada could take to better serve patients with rare diseases is passing an orphan drug law like the one that exists in the United States. These laws incentivize the development of new drugs for rare diseases that are otherwise unprofitable due to small patient populations.