Second letter: February 10, 2010: TO THE HONOURABLE KEVIN FALCON, BC MINSTER OF HEALTH:

Dear Kevin,

This is my second letter to you and the reason is that I want to clearly identify the life and death situation my son faces so that I know that you know the seriousness of this.

• Brad has adult-onset Pompe disease which will take his life if not treated immediately.
• Myozyme therapy for Pompe has been approved by Health Canada and adult-onset Pompe therapy is funded in Alberta and Ontario. It is now saving the lives of adult-onset Pompe patients in both provinces but has not been made available to Brad, who lives in British Columbia, because BC has not funded it. We have been told that Brad is the only adult-onset Pompe patient in BC that would benefit from this therapy.

Brad's condition is deteriorating and time is of the essence. He has already lost one diaphragm. If he loses the other diaphragm he will face the rest of a short life bedridden, on a respirator, with a feeding tube, and die a disgusting and cruel death.

Brad's doctor has applied for funding for a two year trial for Brad which would provide the treatment he needs. That application is tied up in Pharmacare and I was told by a person at the Ministry of Health that it will be months before a decision is made. By then it will be too late to save Brad.

You have the power to do something about this. What would you do if Brad were your son?

Please don't let this happen. Approve treatment on a compassionate basis. There is not a person in this province that would fault you. Quite the contrary. It is the right thing to do.

Sincerely,
John Crittenden

Attachment: Brad's request for Myozyme report (PDF)
Medical report: Pompe LOTS Early Absract Laforet (PDF)
Medical report: Survey2-AusPatientsOnMyozyme-July2009-FINAL (2) (PDF)
Medical report: Pompe respiratory Munich Khan.pdf (PDF)