I'm grateful that we're here today. I know that having patients come here and speak is relatively new to this kind of situation. I guess I really never knew what advocacy meant until I started in the role of doing it. It takes time away from my children, but I'm grateful to be here. I'm grateful that you guys are willing to listen to a different perspective that's not a medical or educational one. It's more about experience. At the end of the day for all this stuff, we're the ones who are impacted, yet nobody understands the full impact.
We came from Port Elgin. It's a trip to get here. We had to leave our kids and entrust them to somebody else, which I'm okay with, but at the end of the day.... I couldn't be more proud to do it, but we shouldn't have to do it. There's not enough listening to the patients.
I understand. If you took one patient from each rare disease, you would have thousands of people and you couldn't listen to all those people, but it's about listening to the people who are actually affected, not just the players. I have no skin in the game. I'm here away from my family. I am actually losing to be here today.
I think it's important to find that voice of the patient population and integrate that with what we're doing with Health Canada and policies and procedures in making a system that works for us. I know that it can't be perfect for everybody, but it has to work in a better way than it is today.