I think what we're hearing is that there's a huge opportunity here, that it is about rare.... The fact that it's rare means you're not going to get classical double blind trials in Canada. We've got to change the rules. I believe that if we can get it right for the rare diseases, we actually would get a better regulatory system for all diseases, meaning that we have been a bit blinkered in Canada with this idea that you have to have Canadian trials in order to go forward.
Maybe you could share with me what other countries are doing, because I thought the FDA had begun a system where you can have a committee of patients and health care providers looking at the international evidence and saying, this is good enough for me, for us, and this gets fast-tracked into Canada, or saying we don't like the way this trial was done, it doesn't look independent, it looks whatever, and that goes into the regular system. But it seems that we need to look at what you would seriously recommend we do from other countries so that we could quickly fix this. There isn't the expertise within that little office.
The idea that the difference between a drug and a radiopharmaceutical...the people in that office only know about drugs. They don't know about radiopharmaceuticals. It's now a real block that we as a committee I think could just suggest that it get done immediately with no money. With Fabry's disease, I think the feds, the provinces.... I was at the meeting where all the health ministers came together, knowing that the pharmaceutical companies were prepared to go a third, a third, a third and help pay for this. It was unevenly placed across Canada, Nova Scotia, and Alberta. All the health ministers said we should help with this, because it's not really fair and because there was almost an epidemic of diagnosis and a very expensive treatment.
I think what we want today is some advice. If we were to write a letter to the minister, if we were to be able to help do this, what would you want in that letter, and would you suggest a structure that has worked in other places? How did Cuba, Poland, Serbia, get around this such that their patients are getting access--on the neuroendocrine, but then also on the pharmaceutical as well?