Thank you, Mr. Chair.
Thank you to the witnesses for sharing their stories. I'm going to summarize what I think I heard.
First of all, it's ridiculous that you have to apply to the special access program every three months for a drug that's prescribed by a doctor for a lifelong condition. That has to be fixed.
Second, it's ridiculous that CADTH is approving a drug that is 20 times the price and is the same exact chemical. Yes, you get something for technology of slow release, but being able to prevent you from continuing on a drug that was working I think is ridiculous as well. That's something that should be addressed in the recommendations.
Then, I think there is the question of funding and how we are going to be able to afford this. I agree that people need these drugs to live, but if I do a little quick calculation for the 27 life expectancy years for cystinosis and the more expensive drug, that would be $810 million. For the drug for aHUS, that would be $4.5 billion, if we think that people could live 30 years.
That is a huge amount of money, and as we see more and more solutions for rare diseases, we're going to have to come up with a way to fund these.
Would you agree that those are things we need to address?