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HELP, moving PCT after NICE guidelines change on Dasatinib

hello all,

 

sorry its been so long since posting. History for those that dont know. My husband Darren was dx'ed with CML, in April 2009 and to start with he wasnt well at all. |When dx'ed the GP had missed it for well over a year and so WBC was 414, spleen was visable from outside and he was a;ways sick. After time in hosiptal he was started on imatinib at 400mg. It worked for a while but in Oct 2010 he was transferred to Hammersmith as his BCR levels had never got below 7% and had started climbing again. In Nov 2010 he started Dasatinib and while his still not below to magic 0.1 he is doing well.

We have made the decision to move out of Herts and move to Dorset. We have 2 girls with Autism and we need better special needs services than we get here. Darren hates his job and we want slower pace of life.

Because of new NICE guideline, we are very worried the new hospital will refuse to give Darren his Dasatinib. Has anyone moved since new guidelines? I cant find anything online about polices ect.

 

Hope your all keeping well x

 

Lisa

Hi Lisa   not sure of the position now, but when I moved PCT the new one accepted the drugs I was on as OK.  Perhaps one way is to stay as a Hammersmith patient and do sharecare with the local hospital in Dorset?   I did this for 3 years between Bath and Kings in London and it worked well.  Kings were very very capable of taking on the westcountry PCT !!!!

 

Good luck with the move.

Pennie. 

The NICE guidlines are not legal just yet. We have an appeal to get through first. Even so, those who are already treated with dasatinib or nilotinib will remain on treatment unless they cease to respond. So given that Darren is responding well to dastatinib a new PCT would not be able to refuse reimbursment. 

Should the NICE FAD go ahead and become official guidance (TAG), newly diagnosed patients teated with 400mg imatinib but go on to show they are intolerant to or resistant will be offered nilotinib.

If they are judged to need dasatinib then they would have to apply to the Cancer Drug Fund.  This is why we are fighting this decision for these drugs in 2nd line (i.e after imatinib).

We also have both drugs coming up for appraisal for 1st line.

There are other drugs coming downstream- i.e bosutinib- which will be appraised next year for 1st line use. and ponatinib which is still in clinical trial.

I hope you feel a little reassured by this.

best wishes,

Sandy