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Help with writing to health minister etc to protest Nice's decision.

Hi,

I was told on thursday (5TH) that I am now resistant to Imatinib, my bmb results were 85% ph +. I'm currently on 600mg Imatinib, but because of NICE's decison my heamatologist, Prof Craddock, has told me that he will have to fight to get Dasatinib for me as the only other option is a BMT.

I have e-mailed my local mp, NICE and I've been to my local paper but how do I go about contacting the dept of health ministers and secetary of state for health etc and could someone help me by maybe posting a template letter that I can use and get friends and family to send.

Any help would be apprecited.

Jackie

Hi Jackie... I am sorry to hear this- it must be worrying for you. Prof. Craddock is very experienced in getting his patients on the right therapy and I am sure he will be able to fight your case.

Your might want to take a look athe the 'Treatment We Need' link (left hand side of this page) to Peter Telfords booklet on how to fight for exceptional treatement. He has letter templates for both you and your consultant to use when applying for PCT approval. 

You can also take a look at the template letters I have uploaded on the Home page and use one of them as a basis for talking about your case. 

I hope this is helpful.

good luck

Sandy

Thanks Sandy,

Prof Craddock rang me today to tell me my pct had agreed to fund Dasatinib for me.

I was really suprised and pleased as we were both expecting a long fight ahead. I will still be helping with the cause though as Nice's decision needs overturning for us all.

 

I'm looking forward to starting Dasatinib tomorrow and hope it works.

Thanks

Jackie

Well done...what a relief- and a timely move for you. Good luck with your response to dasatinib

Bw Sandy

Jackie, I am just so happy for you.  Good luck with Dasatinib.

 

best wishes

Chrissie