It's a good question.
I didn't mention this earlier because I wasn't sure it would be coming up in the discussion today; I'm a member of the drugs for rare disease working group in Ontario. We have developed a completely new framework for making decisions about technologies for rare diseases, which is different from the framework that's made for common diseases, mainly for the reasons that you have suggested already today. Rare diseases are different for a number of reasons. They're different because we don't have as much natural history. We don't actually know what happens in these diseases. They're very heterogeneous. They're not homogenous, like some of these heart failures that have a fairly standard flow of patients. Rare diseases tend to be very, very different for individual patients.
We don't have the evidence for what's effective to the same degree. Because there are not enough patients to study, we don't know whether or not these new technologies work. As I mentioned already, these drugs and other technologies are very, very expensive: it's $500,000 per year for Soliris, which is supposed to be the most expensive drug in the world, and there are many other rare disease drugs that cost over $300,000 per year per patient.
We had a focused approach in Ontario to try to find a way to fund these drugs by giving them to those patients with rare diseases where we think they might work, and then following the patients to see whether or not they do work, and then denying care or taking therapy away when there's evidence that the drugs aren't working. There are approaches to take to do this.
However, the ethics you're looking at are very individualistic ethics. What's the right of the one patient with the rare disease? We have to take a more collective ethics approach as well. If we decide to fund a technology for which the benefits are not substantive compared with the $500,000 a year that it costs to purchase the drug, then we're denying health care to other individuals. The collective ethics say we should do what's best for society in general.
We have to weigh it all up. It's a very difficult to weigh up the demands of individual ethics versus collective ethics. Those are decisions that, I have to say, politicians have to make. They have to make those decisions, because they represent the society in general. We have to realize it is not simple. If we decide to fund these technologies, we are necessarily denying care to other patients with more common diseases.