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response from NICE to my MP

My MP wrote to Andrew Dillon, chief exec NICE. She has just forwarded his reply. One paragraph seems to point very clearly to the financial aspect of all this.

'When making their recommendations our independent Appraisal Committee concluded that although the evidence was of poor quality, dasatinib and nilotinib can be considered a clinically effective treatment of CML in people with imatinib resistance and/or intolerance. However, the uncertainty in the estimates concerning the clinical effectivness together with the exceptionally high acquisition costs of these drugs means they cannot be regarded as an appropriate use of NHS resources.'

The letter is signed by Andrew Dillion.

So has one battle been lost? and how do we go on to fight the war?

I am sure Sandy will advise what we need to do next in this struggle.
Pennie.

The letter you got was almost certainly sent before Wednesday's meeting and repeats the line NICE has been putting out (and that's not surprising). Whether that position has changed or softened in some way post Wednesday we won't know for a while.

Sandy knows this better than anyone, but i understand Nice basically took the same view with imatinib and then backed down - fortunately because that decision undoubtedly has saved many lives, and the clinicians' belief that imatinib could work for a considerable period of time proved correct.

NICE sees the new TKIs are effective they say they just don't know how effective (ie how long the benefit is). They want to see evidence of response over time, which of course cannot come until time passes, which is the same position as imatinib as I see it. However, in this case in the meantime NICE is saying those who need it won't get the chance to see if the prevailing clinical view (that they will work) is right. That's abhorrent to me, especially when the model they've used to estimate effectiveness over time isn't recognised by the CML clincians. It's all about money and looks like pressure to get the price lowered in one way or another. Which frankly makes me question Nice's independence a bit here, I have to say. And why this will have an influence in the way I vote in the Spring.

Keep faith.

Hi Richard,
having been in at the start of the Glivec campaign I know just how 'tricky' NICE can be ! I was one of the very first people to get Glivec on NHS in Feb 2002. It worked for my, but I had terrible side effects and then began to loose my response 3 years ago. I am now on Nilotinib, and doing well, but still not managing to hold a really low PCR.

As far as the politics/money aspects of all of this I really can't see that any one party will make a difference post next eleection - which saddens me. It would be great if any one group would stand up and be counted, both for the drugs that so many people need, not just CMLers, and also to tackle the finacial aspects with the Pharm companies. These monaliths are getting just too large and powerful.

ATB
Pennie.

Taking your vote "elsewhere" will not change a thing, be assured of that....these drug companies have been a personal target of mine long before dx and our protestations have fallen on deaf ears with most MP's (including Tory's where they hold a safe seat)& Department of Health (yup, I too rceived the standard letter..)
So, we wait, then...get on down and dirty?!!!
Vickie

Vickie may well be right about it making no difference and I don't trust any of them as far as I could throw them. I have to say though that the proposed Tory policy of telling the drug company what the NHS are prepared to pay for the drug as an attempt to shift power from a monopoly supplier to a monopoly purchaser seems rather more honest than all the hole-and-corner things happening at the moment with 'rigged' assessments, huge amounts spent lobbying NICE not to approve drugs and arch comments about it being nice if the drug co helped pay for the drug. Maybe they could get the guys from Tesco who've been shafting the farmers to handle the negotiations with the drug companies!
Phil

Oh love it Phil!!! Thanks for the laugh contained within your last sentence!!!
Vickie