Well, for example, for these patients with cystinosis, the system is being forced into providing and reimbursing a drug that may cost $400,000. There's one in the pipeline with Health Canada, about to be approved, which will probably cost $50,000. As Dr. Midgley said, it does virtually exactly the same thing. You take four pills a day as opposed to two. We are no longer allowing our patients to gain access to that $50,000 or $60,000 drug. In fact, the cost of that drug at the moment is $10,000. There are savings right there, if you have a hundred patients across the spectrum.
Are there ways we can ensure that we have more collaboration between pharmaceutical companies and governments? You bet there are. With pCPA, we've pitched some really unique pathways that could help. For instance, there are certain ultra-rare populations of under 10 individuals: Alexion has some patients who require Kanuma, and BioMarin has patients with CLN2 or Batten disease. If one of these drugs is given priority review at Health Canada, the rare disease company would then foot the bill until pCPA negotiations are done, so long as there is an agreement in place within 90 days.
Pharmaceutical companies want to make this happen. Right now, it's a “We get everything or we get nothing” situation. Either the governments are happy because they've brought the price of pharmaceuticals down or the company is happy because they scored a big deal. The only people missing out here are patients.
It's a challenge, yes, but I'm sure there's a solution we can come up with, or our economists can come up with. I guarantee you that if we had what we've seen around the world, such as mining disasters in Chile where there are 21 people stuck down in a cave, we'd spend a hundred million dollars to go in and get them, because it's the right thing to do. An economist could sit there saying, “If we spend that hundred million dollars to go down and get those people, we're not able to buy a CT scan for this group of individuals over here, so let's not do it. Let's let those people die. Let's put the news cameras and news media on it as they waste away”—