My letter to N.I.C.E. with regard to the Afinitor decision.

Let’s see if this has any impact.  I’ve cc’d my local MP and prospective MP and Sir Andrew Dillon as it usually forces them to reply and aknolwledge

Dear Professor Littlejohns,
I am writing to you directly as a Kidney Cancer patient in regard to your decision to deny Afinitor as a second line treatment.
Why if N.I.C.E. openly admit that this drug shows clear clinical benefit do you not seek to approve it?
As you are well aware there are very few treatments available to Kidney Cancer patients in the UK and as such when one comes along it seems only fair to approve it.
You seem (as usual) to have based this negative decision purely on cost.  The QALY calculation you use for some reason is not disclosed to the public due to  IPR which appears ludicrous given this is a public service.  I think it would be fair and proper to make your process transparent and available to the public at large as these are the people you work for.
As a supposed independent body I would expect N.I.C.E. to act as such and not just follow the direction of the Department of Health.  I expect N.I.C.E. to work in the interest of the patient NOT in the interest of government policy.
What real representation did you have from patients?  How much weight was attached to patients as you came to your conclusions?
It is also extremely unfair to only give the public (patients) a few weeks to put their case together.
Why are we given such little time?  If you want a response from patients then they need to be engaged at an earlier stage.  It is outrageous that we only have to the 2nd March to put a case together.
These drugs offer precious time to patients and families.  We are not talking weeks we are talking significant numbers of months and years (as you are well aware).  What cost do you attach to this?
I would also like to add that as a rarer cancer we are not looking at a significant number of patients that need these type of drugs so why do you attach so much weight to cost when we are talking 100’s rather than 1000’s of people?  At £100/day this is not a significant cost.
Kidney Cancer is not a large drain on NHS resources in comparison to other cancers,  so why are we treated in an inferior fashion?  Is it because we are small minority that can’t fight back?
All we ask for is a level playing field, this is clearly not the case and I would expect you to be addressing this in the interest of the patient NOT in the interest of the people who pay your salaries.
I was also shocked that Ann Keen chose to announce that she was spending money on a new design of hospital gowns the day you announce that you will not approve Afinitor as a second line treatment, this was heartless and cruel.  Disgraceful that we seem able to waste money and resources on items such as these and yet deny patients vital drugs that can give them a real quality of life.
Clearly there are hundreds of other examples within the NHS where resources are being wasted (not least of which is the NPfIT) but there is little point in documenting them each in detail in this letter as you are well aware of it yourself.
I urge you not to respond by saying that you are not responsible for any spend within the NHS or for government policy, rather I would like to hear how you will engage with the government (DoH) on how we can stop this waste. I’d also like to hear how you will start to engage with patients at a real level.  The NHS is a wonderful resource and it is sad to see it being destroyed by bureaucracy in this way.
Please realise that N.I.C.E. is meant to be an independent body working in the interest of the patient and as such we expect you to behave as such not to just throw cost in our faces each time a new drug is presented that offers valuable time and quality of life to people.
I respectfully ask that you reverse your cruel decision and allow Afinitor as a second line treatment for Kidney Cancer patients.  I also respectfully ask that you review what is clearly a floored approval process.
Yours Sincerely
Andy Thomas
97 Sheepcot Lane
WD25 0DU
cc Sir Andrew Dillon
cc Claire Ward MP
cc Richard Harrington
The more of us who do this, the more we can keep it in the public eye. The meeting at the House of Lords last week went very well and Rose has secured a meeting with Ann keen to discuss this further.  This is a great step forward!

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Posted under Afinitor(aka Everolimus/RAD001), Andy Thomas, N.I.C.E.

2 Comments so far

  1. Bobby Mc Donald April 23, 2010 10:34 am

    I was interested to read your letter. My daughter ahs been told that she has chromophobe kidney cancer. She has had two cycles of Sutent which has not worked. The oncologist submitted an application for TORISEL which was rejected on economic grounds. Did you get a reply to your letter re Afinitor.

  2. AndyThomas April 23, 2010 4:03 pm

    I’m afraid I got the stock response back from NICE trying to explain their idiotic QALY calculations, so nothing of any use. However the fight will go on until we get some sense out of them.

    On the positive side at least the issue is getting some air time with the elections.

    I would also keep looking on the forum and talking to Rose as she is very much plugged into this

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