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Withdrawl of Dasatinib/Nilotinid from patients

Alyson Thank you so very much for flagging this up. I really did not have a clue this was in the recommendations, the documentation is just beyond my comprehension!

(Quote from Alysons post below)

'Having studied the latest NICE ACD in order to submit comments by yesterday's deadline. I was horrified to discover that the 'concession' for existing Dasatinib/Nilotinib patients to be able to continue treatment (which had been included in the first ACD in November) has now been removed!'

Sandy can you please, please, let those of us who find this all very very difficult to untangle, the possible timeline of events and the possible/potential actions to be taken? Perhaps a brief overview of the future actions would be extremely helpful.

Many thanks
Pennie.

I have to say I missed this as well and am now pretty scared. I would imagine though that there would be a massive Human Rights issue and a good chance of a Court Case if they attempted this and I for one would be happy to take it as far as possible. Dasatanib has been working so well for me that I would not want to lose it under these circumstances.
K

Here is another nasty decision by Nice, Azacitidine, used to treat two forms of leukaemia including CML, has been turned down by NICE according to todays Daily Telegraph.
I must say that I am increasingly worried for those of us on Nilotinib & Disatinib (and of coures those who may need to have these drugs in the future). This is a very difficult time for us.
I asked my consultant today if I would still get funding for Nilotinib if NICE refuse this drug & he isnt sure that I will. OMG.

Do you think this is going to end up as a postcode lottery drug where one PCT will fund the drugs and the next one won't as NICE say they don't have to? When this first came up my consultant did seem to feel that our local PCT would continue funding but there is certainly no guarantee of that...
K

When the first ACD came out, one of the letters that I wrote was to the chief exec of my PCT asing if they would still fund my Dasatinib if this went against us. That was on the 17th December, & I am still waiting for his reply. I suspect he is waiting for NICE, so as he can follow their lead.
Bob

Dear Pennie,
I am not sure what more I can do but I will try. All the dates and timelines are already flagged up but I will attempt to make a list:

1. March 2nd deadline (now passed) for NICE comment from members of the public
2. March 2nd deadline for CML Support Group's official submission to NICE- sent by me and confirmed by NICE that it was received.
3. Confirmation by NICE that I can attend the 1st half of the ACD meeting in Manchester on 9th March. As observer only.

What can you do?
1. Read the CML Support press release which is under Newswire Feb 22
2. Send the CML Support Group press release to your MP
3. Find out when your MP has a surgery and go and see them face to face to explain your personal situation should this NICE ACD be adopted.
4. Ask them to submit a Parliamentary Question to the Health Secretary/minister
5. Make sure you have read and Signed the petition
6. Share link to petition with as many people as you can and get them read it and sign too.

Hope this helps, if anyone else can think of other ways to be pro-active then please share your ideas.

I can send a paper version of the petition to anyone who wants to collect signatures off-line. Signatures need to be collected with official paper version so they can then be incorporated with the online version.
Please contact me on cmlsupportgroup@gmail.com with your postal address if you feel you would like to do this.

I see we have now broken the 1000 barrier ;o)))

best wishes,
Sandy

Waste of time contacting my South Ribble MP, David Borrow. I contacted him in November asking him not to simply pass my letter on to the Dept of health, but to talk to people who can influence the situation.

Got a letter back from the Dept of health stating the position of NICE, which we already knew. I don't even know whether or not Mr Borrow supports me/us. I've heard nothing else from him, despite contacting him on numerous occassions.

Disgusted with the man.

Have managed to book an appointment with my MP, Maria Miller - Conservative, for the 19th March. Will make sure I am well prepared to, hopefully, get the maximum benefit from it.
Irene

Dear Dennis .. let him know he has lost your vote.
This is the only way we can exert power over politicians.

Best,
Sandy

Already have told him Sandy. Over a week ago. - No response.

I'd just like to reassure you all that some MPs are better than others, and for those of you who haven't, it's certainly worth getting in touch with your local MP. Vince Cable recently put the following on his website:

http://vincentcable.org.uk/news/001654/drug_setback_for_local_cancer_suf...

I've also received a great deal of correspondence from his office. It certainly sounds like he has continued to broach this subject with those at NICE.

You've been very unfortunate with David Borrow, Dennis.