I simply had to write today to let you know about the reply I have received from Sir Andrew Dillon by way of Janet Fahie from the Enquiry Handling Team. I’ve scanned the letter in below but I will bring to your attention this:

In this case Dasatinib and high-dose imatinib did not provide enough benefit to patients to justify their high cost, so NICE did not recommend them.”

I have to ask exactly what benefits NICE are looking for from Dasatinib? This is a drug that is saving lives and allowing people, like me to live normal healthy existences. These aren’t in isolated incidences, all over the world, every day lives are being saved by Dasatinib. In the UK we are in danger of relying on old drug therapy. At a recent conference I attended Dr Jorge Cortes stated that he had not used imatinib since 2001 because there were more effective treatments to use. Jorge Cortes, MD, is deputy chair and professor of medicine in the Department of Leukemia at The University of Texas MD Anderson Cancer Center, Houston Texas where he directs the CML Program.

It is estimated that 1 in 5 patients will benefit from dasatinib treatment yet NICE once again insist on their gold standard of research which, as we know, is impossible to conduct on such a rare disease.

I will be writing back to Sir Andrew with these points and I’d urge you to do the same.

Sir Andrew Dillon CML reply

All my best wishes,