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NICE ACD- nilotinib/dasatinib

Dear All,
please be assured that we are working on our response to NICE ACD through the correct procedures and as official consultees.

I am also working on a letter which we intend to send to the DH ministers involved and will be asking for your support of that letter.

This will not replace letters to other MP's but will be in addition. I will try to see my own MP as soon as I can.

I strongly advise that all individuals act independently and send comments through the links on the NICE website as well as seeing/writing to your local MP's and contacting media as Sarah has already done so successfully.

Please by mindful that patients are criticized for allowing their stories to be used by those who might have vested interests in getting drugs through the NICE system.
CML Support have to be careful that we are, and are seen to be, independent of undue influences. We know we have the weight of evidence to support us and CML Support will try to use the evidence to argue our objections to this ACD.

Please also be aware that this is a public forum and can be accessed by any interested parties. That is why we do not publish individual email addresses on this forum.

I will take some more time on this of the next few days as our main priority at the moment is to collate the reasons why this ACD is flawed.

Sandy

Thank you so much for the work you are doing on our behalf Sandy. Your expertise and knowledge in this field are inavaluable to us all.

I am guilty of publishing my email address on a prvious posting and take on board what you have said about this. I assume there is now no way to remove this?

Vickie

I wrote an e-mail summarising all our concerns to my MP last night. I have had a response today with an invitation to call him to arrange an appointment, which I will follow up. I also wonder if it is worth starting a petition on the 10 Downing Street web-site? I understand that if you get 200 people to sign up to these a reponse has to be issued, so may have potential for increasing the profile of the flaws in the NICE ACD.

Alastair