For us in this case specifically, and there's a lot that I don't know, but I'm also trying to raise and home school two children and take care of a sick one. There's a lot that I wish I understood more about, but from what I do see and have felt the direct effect of, with drug companies coming into Ontario, something needs to change. We need to make sure we're two steps ahead of the pharmaceutical companies that want to come here, because they're always two steps ahead of us. That is something we need to be extremely cautious about. I'm so grateful to live in Ontario where we do have coverage. If we were forced to switch, we could switch to this high-priced drug and our daughter would still be on it.
The other piece is that when we welcome these companies to come to our country, they need to provide more to us, especially when their price tags are so high. They should be building business here. We shouldn't be paying for these high-priced drugs and then all of their business is going to other countries. They need to give back to the rare disease community as well. They should be advancing...again, we need pharmaceutical companies for advancements for our kids. But it's actually embarrassing that these companies come. They don't have to produce their drugs here. They don't have to employ people here, and even in our situation with Horizon pharmaceuticals, our potential patient support is in the United States. They don't even understand how each province is different.
There's that part. We need to have higher standards for the companies that come in, and we need to make the process more cohesive. The fact that a drug was approved in June 2017, and the potential treatment was taken away from us at that time, and there was lots of back-pedalling and trying to fix things, and then the price was just approved, and how we were going to cover it, over a year later.... It's embarrassing actually.