I'd like to follow up on the elephant in the room when you talk about rare diseases and prescription response: price. You also wrote in that article, “There are now 19 drugs on the Canadian market that cost $50,000 or more per year, compared to just six a decade ago.”
You used the example of a life-saving drug to treat cystinosis, a rare disease affecting probably 100 people across Canada. When you said that it's “soon to rise from $10,000 per year to more than $300,000 annually”, you indicated that the new form of the drug “contains the same active ingredient as the old form of the drug”, but that “it differs only in that it contains a new coating, enabling a slower release of chemicals into the body.” You pointed out that “the basic research and development...was financed by patient groups, not drug companies”, and that “Horizon Pharma has not publicly offered any reason for the price it plans to charge.”
What can you tell this committee about our need and our desire as policy-makers to make sure that Canadians suffering from rare diseases get access to significant new developments, and how do we measure these massive costs with efficacy?