Health committee  May I answer that question? Is that possible? I can make it very short.

Health committee  The expert is here in Canada. We've brought him here from Germany, and he is studying atypical HUS. The results are coming here, and Caryn is part of that research. It is related to some other illnesses as well, but he is here at SickKids working with a doctor at Toronto General

Health committee  Do you mean the actual test sites, where they would have done the tests?

Health committee  Thank you very much.

Health committee  For sure.

Health committee  What happened was that it was approved by the federal government, by Health Canada, and then when it went to the provinces, it was decided by CADTH that it wouldn't be approved because it was too costly and wasn't effective. All the research said the drug worked. That was why He

Health committee  Our personal life or the life of all aHUS patients?

Health committee  I would like to see the drug funded so that at this point in life I don't have to worry. Caryn can have a transplant. She could get the missing part of her life back in place, and not have to worry that the drug company or the Province of Ontario will cut it out after three month

Health committee  They're the same drug. They just have a different name.

Health committee  I do not know.

Health committee  Yes, my understanding is it costs $750,000.

Health committee  The illness reoccurs, and whenever the illness occurs, it's death. You're always on death's doorstep as it reoccurs.

Health committee  Caryn's pills are for high blood pressure. The actual eculizumab is every two weeks. There's an infusion of eculizumab every two weeks.

Health committee  I've been a single mom since Caryn was three. I had to keep my job; it wasn't a choice. Caryn is one of three children. All those months she spent in hospital, I was there with her every night. I left work. I drove to SickKids. I would get up in the morning at six o'clock and he

Health committee  In Erin's case, we don't hear of any upcoming credits or bonus sales going on for the drug cost. The cost is the cost. However, in our disease case there is current research going on with, I believe, three other companies to produce other drugs that look promising to be cheaper.