Article content

Getting access to, and funding for, treatments for rare diseases has been a long-standing challenge in Canada. Unlike more common diseases, where economies of scale allow for easier access to research and funding support, rare-disease groups have been facing an uphill battle that spans years.

Rare diseases are classified as those that affect fewer than one in 2,000 people. Overall, according to the Canadian Organization for Rare Disorders (CORD), there are close to 7,000 rare diseases.

Canada stands apart as a country that does not yet have a policy in place to help bring treatments for rare diseases. The United States has had its Orphan Drug Policy since 1983. Japan (1993), Australia (1997), and Europe (2000) have been equally forthcoming in developing frameworks to support rare disease research, drug development and access to treatment.

According to CORD, of the 307 orphan drugs currently approved in the United States and Europe only 60% make their way into Canada; and most get approved up to six years later than in the United States and Europe. As a result, people with rare disorders are missing out on treatment that could save or significantly improve their lives, says Durhane Wong-Rieger, CORD president and chief executive officer in Toronto.