Rare Diseases


The focus of this project is on how rare diseases affect Canadian patients and their families, the costs of drugs used to treat them as determined by the pharmaceutical companies, and the financial impact of these costs on our health care system. The ability to diagnose rare diseases is on the rise, along with the spiraling costs, driving the health care system towards a crisis that needs to be addressed.

During our research we asked the families and the experts to share their experience with the diseases and their thoughts about the practical, ethical and medical dilemmas posed by the high costs and the need to decide which rare disease drugs to fund, who gets treated, and who doesn’t. Ultimately, many of them have argued, Canada needs a uniform policy to secure equitable access, to maximize benefits, and to avoid the collapse of the health care system burdened by escalating costs.

The result of this work is an evolving multimedia website, www.milliondollarmeds.com, with videos, articles and photos that we hope will engage and inform. We’re especially grateful to the many families who shared their hopes, dreams and struggles with us. They have inspired us with their determination and courage, and their willingness to share their lives on camera.