Hi Bob, I have heard nothing more from NICE regarding the likely date. I am not holding my breath. If and when I hear anything about the FAD I will let you know! I am hoping that we get some sort of change but from my recent experience attending the NICE 'scoping' meeting for the upcoming appraisal on IM 'resistant' patients I expect the worst.
I was very struck by the extremely aggressive attitude some members of the committee displayed, particularly towards the representatives of the pharma companies involved (Novartis and BMS). Several of us present (including Leukaemia Care and L eukaemia and Lymphoma Research Fund) tried to point out the inconsistancies of the HA models used by NICE in cases of rare cancers and their appraisals of novel therapies but I must say, it was very hard to change their 'world view' on this. Professors Apperley (HH) and Hughes (Liverpool Royal) were both very robust in their criticisms and did have some small effect on the scoping content. I was very impressed with Prof. Apperley in particular. She managed to get through to them by using their own logic against them. They seem not to understand (willfully perhaps) about the complexity of haematological cancers and blood diseases. This ignorance is probably wide spread - reading about the FDA ruling on rejecting an effective drug for CML with T315i mutation it makes you wonder what sort of 'minds' sit on such committees.
With the current political and financial climate (and not just here in the UK)- I am expecting that rare cancers like CML will increasingly bare the brunt of cutbacks. We have been fortunate to have such and effective drug imatinib -up to now.- but I fear the future.
We are continuing to try to make our voice heard on several platforms in the EU ...but the NICE HTA model is being taken up with some gusto by some other EU states... we have a steep hill to climb which is why we need to form alliances.. and also we all need to try to decide just what sort of health system we really do want-and how much we are willing to pay for it ;o)
I am not sure what the new government will do with NICE or with finding the money to fund all the novel therapies that are coming down the line. They also need to keep pharma industry happy... 25% of UK manufacturing is from pharma industry based in the UK. To lose this to other EU states would be disasterous for the UK economy... we watch with some interest.
Sandy
