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Response to NICE appraisal

Hi All,

Today I had a meeting with James Clappison, my local Conservative MP for Hertsmere and also a member of the shadow cabinet.

After putting all the points to him regarding this appraisal he seemed genuinely horrified that such a position is being taken by NICE. He asked if Imatanib and the second generation drugs were a short term life prolonging drug or long term drug for life. I clarified him on this point and what alternative were available if not the second generation drugs.

He said he would write straight away to the minister for health, etc asking for a response from him as to why such things are happening. Money should not be important.
I showed him the front page of the Daily Mail from I think this Wednesday which showed Nice refusing a drug for Bowel Cancer. He asked if anyone had been in touch with the daily mail about our plight which I could not answer and said that he would be delighted to comment on our plight if contacted by the press.

I also mentioned that a general election was looming and that all Cancer sufferers would probably unite behind any party that would take not only CML seriously but all life threatening illnesses.

I urge you all. Contact your MP get your local press involved. Make them aware of our plight. NICE seem to be stuck on £30,000 as a limit for funding which I believe has not been increased for a decade.

Help and involvement will be available from your consultant. Professor Apperley at Hammersmith was only too willing to help me with my presentation to my MP although time was short as I got an appointment with only 2 days notice.

I had a meeting with my MP, Laurence Robertson (Con) this morning. He was interested in our problem and has agreed to take it up with the minister of health.

Sandy, your comments on this site were very helpful in getting together some key points to stress to him. My wife and I are very grateful to you for all your efforts in helping us all to understand the issues and more generally in the creation of this excellent and supportive site. We cannot thank you enough.

I also gave him a copy of the recent NY Times interview with Dr Druker to illustrate what pre Imatinib CML life was like and what it will return to for some sufferers in future if Dasatinib and Nilotinib are denied to Imatinib resistant and intolerant patients.

Simon

Simon
New York Times only need to talk to me, dx in 1996, interferon alpha, that was not an option, at time of dx only given 2 months to go!!!!! not an option, fortunately Imatinib came along in 2001, followed by Dasatinib in 2006, perhaps I could give them a 'aptients perspective ?
Keith Pratt

Nice one Keith!!!
p.s. do you get much sleep on the Dasatinib?
Vickie

Hi Vickie
sleep like a log, every night for a regular 8 hours at least. I cannot remember ever having a problem with insomnia.
Only problem I ever has was in 1997 when as an in-patient on Dacia Ward at Hammersmith (the old tin shed) when my bed was strateically placed under the air con outlet, I froze ever night, three blankets every night, despite it being July !!!!
Keep smiling
Keith

Very pleased for you Keith (she said through gritted teeth!!). I've always slept really well until now and it's impacting on my functionability (!) now..tried all the usual..
Vickie

Phew! Have just submitted comments on the NICE website. It's not an easy form to fill in.
For those of you who have yet to do it, be warned that there is a limit on how many words you are allowed to write. Still, it was an effective way to reduce my ranting into factual statements.

I recall someone on another thread asking about whether you can save halfway through - no you can't. But what you can do is type out your comments in a separate Word or Notepad document, and then just copy it into the relevant boxes when you are ready.

Good luck with it everyone.

Bhiru