Prior to all the changes, I didn't even know they had to apply every six months; honestly, I thought it was once a year. I would call the pharmacy when we were headed down to the clinic and I would just say that Olivia needs a refill on her prescription and there were no questions asked. It would be there, and every three months we would get it refilled. When everything came into place with Procysbi, they just changed the way we have to apply to every three months. Why, exactly, we were never given a reason. There are speculated reasons around the issue that they have to be cautious because there is a marketed drug in Canada so they have to be cautious on how and who they give access to Cystagon to.
We have clinic in two weeks, and I messaged down because I'm extremely proactive, because this drug Cystagon now comes from the U.K., so I have to worry about it being imported on time, getting stuck in customs and so on. These are all things that I choose to take on as a parent and worry, because I take such great care of my child. There are other parents who are really whimsical about it, and that's fine, but they're in situations where they have run out of drug and then they have to look within our community to help them until they get their supply because they have to go through this process. The disease isn't going away in three months. I wish it would. My understanding is that it's just a business; they have to watch.