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BBC 'Look North' Interview

What a brilliant piece of reporting- well done- This is such a powerful piece.

Two important messages leap out from this interview:

"Big Society": he is a regular blood donor and it was here that his CML was detected. Neil has always believed in putting something back in and now its his turn to ask for something back out.   

Choice - to have the right to choose the drug he and his doctor feel most suits his disease profile.

Sandy

http://www.bbc.co.uk/iplayer/episode/b011f2cn/Look_North_(North_East_and_Cumbria)_23_05_2011/

Great report. Thank you for doing it. As Sandy says, it is very powerful. I am getting very tired of Sir Andrew Dillon and NICE saying the evidence for the effectiveness of Dasatinib and Nilotinib is "weak" (twice now in the Daily Telegraph). It is a perverse distortion of the reality. He knows perfectly well that a four arm trial will not happen so "weak" is not a proper summary of the true position. If I have time today, I will write to him and tell him to stop repeating that simplistic approach and invite him to instruct his staff to be more careful in what they say to the Press. It is misleading.

Dear David, I share your frustration at Andrew Dillon's rather misleading press statement. 

This decision is "perverse" and "inconsistent", plus the NICE appraisal model  is "not fit for purpose" for new inhibitor drugs for use in rare (orphan status) diseases with very small patient populations like CML (and in this particular case a sub-population of IM resistant CML which would amount to around 125 newly diagnosed patients per year).-  there could never be anywhere near enough eligible patients to permit a gold standard clinical trial of the kind favoured by NICE (using hydroxycarbamide as comparator) to occur.... and we haven't even discussed the ethics involved with such a trial!

Sandy

Thanks, I must say a massive thanks to Sharon Barbour at Look North Tyne Tees, she put together a very good article with a clear message coming through on what is a complex subject.  Lets hope it has some impact!