As a good Canadian, I file my taxes every year and I file my medical expenses. My out-of-pocket medical expenses vary between $7,000 and $10,000 a year. I'm 40, so I've been paying those costs for at least the last 20 years, because, first of all, I travel to Toronto for care. My disease is ultra-rare, so I see a specialist there who specializes in that area. I spend a substantial amount of my own money. I'm very fortunate to have private insurance with a catastrophic clause in it, so that helps a lot. But even with that, I'm still $7,000 to $10,000 out of pocket.
I have a lot of ideas about recommendations, but I think the thing that strikes me the most is that there's no equity across the country. It's very difficult for a patient to know that someone in B.C. or someone in another province has exactly the same condition as you and receives treatment when, maybe in your province, you don't. People who don't have rare diseases or who don't deal with drugs are flabbergasted by that. We're all Canadians, and they seem to think that universal coverage in hospitals extends to drugs. There's very little understanding of that until you're in that situation yourself.
What's happened with the Internet is that everyone is connected now. Twenty years ago, you didn't know what was happening anywhere else. You were in your own little bubble and you just kind of accepted it. Now, today, you know what's happening worldwide, so to have a catastrophic rare disease and to know that there's treatment out there and that even some of your fellow Canadians are getting it and you're not is extremely difficult to accept. To me, it's not a Canadian value. It's just not how we work as a society.
I think that whatever you can do to try to bring some equity into the system and to make sure that all Canadians are served would be top of mind.