The shock and anger quickly gave way to a steely determination that this callous report by NICE would not pass unchallenged. Not by me anyway. Ive spent the last few days emailing everyone I can think of and generally making a nuscience of myself.
Gordon Brown is apparently on holiday in Scotland right now, thats nice isnt it? How convinient for NICE to announce their preliminary report during the parlimentary holiday?
The long term ramifications of this decision are enormous.
Today it is kidney cancer drugs under threat. If NICE manage to prevent them being funded, despite their proved efficacy, tomorrow it will be another expensive cancer treatment. This will be the start of a two-tier health system with only the rich being able to afford the best and most effective treatment or drugs......for anything, not just cancer.
The drug companies who research, develop and trial these drugs invest millions of pounds in them. Every trial, both here and in the US is fully funded by the drug company. Although Sutent passed all its stages of trials here in the UK with flying colours, the drug company, Pfizer, are still investing huge amounts of money in trialing combination therapies involving Sutent and other drugs.
In fact Pfizer have bent over backwards to reduce the cost of Sutent - they now give the first month free to every patient who is prescribed it.
There is a distinct possibility that drug companies may in the future decide to exclude the UK in any future trials - therefore denying us the latest treatment for any number of diseases, not just cancer.
Much has been made of the cost of these 4 mRcc drugs - and yes, undeniably they are expensive. But they are needed by a very small number of patients and their use is restricted by the self limiting nature of the disease, even if the drug works its not a cure - its merely buying you some extra quality time. Compare this with the number of patients receiving costly HIV drugs - some for many years now - and the true cost to the NHS is negligable.
Without these 4 drugs kidney cancer treatment in the UK is medieval, relying on Inteferon, a treatment which is 30 years old and has a very poor response rate, or HDIL2, the treatment I received which is only appropriate for a very small number of patients and also has a poor response rate.
So its simple really.
Without these 4 drugs we shall all die an early death.
Without these drugs we have no hope, nothing to fight with.
And that cant be right can it?