Canada needs a policy for rare disease treatment, say researchers

A national approach to funding research and production of drugs for the treatment of rare diseases is needed for Canada, and the nation and can learn from other countries how to do this, say researchers in an analysis article published in the Canadian Medical Association Journal, July 12 issue.

Due to relatively small markets, pharmaceutical companies may be reluctant to conduct research into new treatments or to manufacture drugs, and there is a constant risk that they may stop making these medicines. A partnership is needed between the federal government, pharmaceutical companies and the medical communities to ensure people with rare diseases can get treatment.

"In stark contrast to other developed nations and despite the fact that the number of rare diseases continues to increase along with the number of individuals affected, Canada does not have a policy framework connecting these three groups, and attempts to function with a relatively piecemeal approach," writes Chaim Bell of St Michael's Hospital in Toronto and co-author of the article.