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Further News Stories - NICE ACD (inc. NICE press release)

Just to keep you all updated, the Press Association put a story about me and the NICE ACD out last night. Hopefully it'll be picked up by a few papers and other media organisations.

For your reference, 4 more stories have gone out today.

Two about me (the first is on the front page of the paper):

www.yourlocalguardian.co.uk/news/local/richmondnews/4839519.Cancer_sufferer_fights_for_lifesaving_drugs/

www.yorkshirepost.co.uk/news/Cancer-victim-39being-left-to.5961759.jp

One about an individual called Chris Jarvie (including the petition - well done!!):

www.journallive.co.uk/north-east-news/todays-news/2010/01/07/chris-jarvie-help-me-fight-cancer-drug-battle-61634-25542621/

And, interestingly, a story by NICE:

www.medicalnewstoday.com/articles/175165.php

This appears to be an official NICE a press release (see link below):

www.nice.org.uk/newsroom/pressreleases

Jed

(PS. Sorry if I'm clogging the forum up, Sandy!!)

Dear Jed.... don't worry about clogging up the forum... you are not. The sharing of information is what this is all about and the more you do the less I have to ;o)

for everyone's convenience, I have edited your post and changed the links to direct ones.....

It is really good that the media..both local and national keep on running with the NICE story and it is especially good that individual stories like yours and others are being used. It serves to humanise what could be a fairly uninteresting story for the general public and is more powerful in getting over the key messages we want to use.
Really we need the politicians to feel the pressure.... that is the only way we can change the ACD in our favour.
Keep going.... it might take a while but we have to believe that we will win in the end.

Sandy

Clog away... You're bringing the human side to the story which gets hidden by the cold and detached NICE assessment. NICE needs to be put on the back foot here because they are wrong, as they were initially with imatinib. The recent decision was described to me by one very eminent expert as one of NICE's really bad decisions which makes me wonder seriously if the initial rejection is almost deliberate. Professor Littlehjohns's public indication re cost sharing makes me wonder. I hope Novartis and BMS do that for the good of patients but I don't believe this is the right way to go about it. It's certainly not independent. Initially I was distressed by the ACD but am increasingly angry about it.

Pretty sure you have the full support (and admiration) of every CML patient Jed so keep going. I think you're having an effect.

Richard

Thank you so very much for all your efforts to get the human impact of the NICE ACD accross to the public. We are very grateful that you are putting accross the point that you are fighting for all those in future who may become resistant or intolorant to imatinib. My wife and I really appreciate all your hard work and we wish you all the very best for the future.

Simon and Denise Clayson