Yes, in the States, where the biggest issue lies right now is.... Yes, they get it if they want it, if their insurance will cover it, right? Some patients pay $92,000 a month to be on this drug in the U.S. Yes, that's what it costs a month to be on this drug, but the insurance company covers it. But they have the choice. They have the choice to stay on one. In Canada, people will say to me.... The company that now owns Cystagon—it was bought recently by a new company from the U.K.—but they haven't applied. I can't be punished for somebody else's business decision, and that's exactly what is happening in our country.
This drug Cystagon has been around for 35 years and it is trusted. It works. It's an awful drug to want to be on. Some days I can't believe I fight for it. I should be fighting for a new drug. So that's the biggest thing.
In the States they have a choice and there are families for whom the thought of every 12 hours is appealing and they switch to this drug because the other fear was, what if we did want to switch Olivia? What if we said she's ready and we want to switch her?
Our fear is what happens if there are really bad side effects. It has happened in the States. Their white blood cystine levels go all over the place and it just causes an upheaval in life.
There are families in Ontario who have considered switching and they should have the right to switch as well. I'm not against it being here, but they're wondering what happens if they put their two-year-old daughter on this new drug and the side effects are so bad and they can't switch back. What if they don't let them switch back? That should not be something we have to worry about. We just want to keep our kids alive and healthy, and now we're worried because we want to try this new drug but we can't.