In a Radio-Canada radio interview on January 19, 1974, Dr. André Barbeau told Fernand Séguin how he viewed research in health:

“The problem is the total level of support for research. Let’s call a spade a spade: “health” is in fact “the health industry.” It accounts for two billion dollars annually at the federal level. Do you know of any industry that does not spend at least five percent of its budget on research and development? The fact is that medical research accounts for barely one to two percent – two if you take into account all government departments including at the provincial level and less than one percent if you only consider the Medical Research Council. It is patently obvious that as long as the level of research is not sufficient, less frequent problems cannot be addressed. Currently, cancer, diabetes, hypertension – these are the problems getting the majority of funding. This is understandable, as they are much more prevalent. It’s understandable when there are limitations, but there should not be such limitations.”

In 2015, 41 years later, if you add up all the amounts spent in the Canadian health industry, both public and private sectors, the amount dedicated to research on diseases certainly amounts to less than one percent, and probably less than 0.5%. This covers research on all diseases. Clearly, the more prevalent diseases get the lion’s share. Recent studies put health spending in Canada in 2014 at 216 billion dollars, 70% from the public sector and 30% from the private.

People in the know about rare diseases will quickly realise that starting from that 0.5% of total research spent on diseases, only about 3% of the 0.5% is devoted to research on all the rare diseases.

You will surely understand the fundamental role played by Ataxia Canada – Fondation Claude St-Jean in funding and as promoter of research.

You can help us by generously donating on our website, www.lacaf.org, by phone at 514-321-8684, or by mail to Ataxia Canada, P.O. Box 49065, Montreal, Quebec H1N 3T6, and by participating in our events: the cyclosportive Défi Ataxie cycling event, www.defiataxie.com/, The Walk to Fight Family Ataxias, https://lacaf.org/?event=the-walk-to-fight-fa-on&event_date=2015-09-20, taking place in different cities across Canada, and many other events and activities.

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