If I understood correctly, one of the problems is that for most rare diseases there are no medicines at all. When you're talking about unaffordable medicines that parents are trying to get, that's what we're trying to fix.
There's the problem of today, which as you say is how parents get their medicines, and there are the problems of tomorrow, which we as researchers are interested in: How do we make affordable medicines for all these children, so they never have to do as you're saying?
To your specific question, I can't tell you the answer, but we're trying to argue that Canada should try to make it happen, such that these children—and the parents, obviously—have affordable medicine and are not forced to make difficult decisions and do things to get access to medicines they can't afford and that aren't available.