I don't know how the treatment of these patients...but presumably, when we have friends like Kym Boycott at CHEO, they know all the network of folks. It's a very close community and it's close to these rare disease researchers. When it's not available in Canada, our regulators are slower than in many aspects of Canadian regulatory life; it's not just medicine. Our regulators tend to be more cautious than the American ones, so inevitably it's available in America first. The solution is, as you say, to go to the clinics and talk to the physicians that Genome Canada supports. They will have good advice as to what is and what is not a good medicine and where to get it.
The problem of accessibility is due to our regulators.