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Withdrawl of Dasatinib/Nilotinid

Many thanks to Pennie (04 Mar)and Sandy as always regarding trying to spread some light on this issue which is of great concern to many on here.
Being on Dasatinib myself, i am anxious to understand the timetable of events in the coming months of when the decision on the Appraisal will be made.
I have signed the petition, and am currently making arrangements to see my MP.
Thanks to everyone who has voiced their concerns on this very serious issue for many of us not just now but in the future.

Chris Hoyle,Oldham

Spoke to my consultant today who stated he can no longer put new Glivec intolerant patients onto Dasatinib anymore.

Dear Chris and Michael,

The time line is... the NICE appraisal committee with publish their recommendations within 30 days of the ACD meeting (March 9th). I had confirmation from NICE that the petition - which at the time I sent it had 1200 odd signatures- had been given to the chair of the committee on the day of the meeting.
The official comment from us (CML SUPPORT GROUP) was agreed and fully supported by both Macmillan and the Leukaemia and Lymphoma Research Fund and both organisations added their logos to our submission.
I know that the various groups of CML doctors also made robust submissions.

The appraisal committee is considering all the objections and will as I said above published their findings as a FAD (final appraisal document) at some point this month. If that document is negative and does not recommend NHS funding then the decision can still be appealed. This would take another few weeks and then they would need to consider the appeal. Should an appeal fail then the recommendation will then become the TAG or Technology Appraisal Guidance.

I am amazed that Michaels consultant is already second guessing the NICE FAD/TAG. This is not correct and any patient that needs a change of therapy to dasatinib or nilotinib can and should fight such a decision.
I have a contact who works in a voluntary capacity to support patients through the 'Exceptional Funding' appeal process. She has been very successful and has helped many patients (not just CML patients) get access to drugs they need.

Michael, please remind me which hospital are your treated at?

The petition now has 1375 signatures... I am trying to get to 1400 before I close it so I advertised it once again this week on my facebook page... perhaps those of you who have a page could do the same and we could see 1400 ... only 25 more signatures!
I will then send it to the DH ministers.
Sandy

I too am very surprised to hear what Michael's Consultant said as I had a discussion about this with my Consultant (just at the local hospital) last week and he is more than confident that those who are "intolerant" will have no difficulty obtaining an alternative TKI. I also worked out for myself that, if this is correct, then patients who are "resistant" need to develop nasty side-effects in order then to be labelled as "intolerant".

Vickie

I have written to my MP, John Bercow, about all this and NICE. Although he is now the Speaker in the House of Commons, that also means he has faster access to Secretary's of State than other MPs. I am thinking ahead, in case this goes pear shaped for us. Once he is engaged in what is going on, it will be easier to contact him again.

David

I attend Kings,It might be because Kings deal with so many PCTs that they are on hold for a short time until the FAD is issued.
Kings have always had to get permission from PCTs in the past.(in my case it took four weeks between comming of glivec to going on dasatnib)

Hi Michael Wonder who you saw at Kings? I know that some PCTs in south London have already said no to 2nd generation TKIs perhaps yours is one?

If you need to fight this I urge you to use the contact Sandy has. In my case I used a contact she suggested, last year, to gain Nilotinib from my PCT, post trial at Kings. Its a minefield out there but its navigable with the right guidance.

Good luck
Pennie

Hi Pennie,I have no problems about getting TKIs,I am refering to new patients.
I am sadly not helped by either 1st or 2nd generation TKIs.
my options are BMT or nothing.
At the 50/50 odds I have been given,I might go on a cruise instead.

Hi Michael...big hugs to you, your family and your predicament..
Vickie

Thanks Vickie

I have been in touch with Novartis and it is my understanding that once you are on the new TKI's you cannot be taken off it by a PCT unless there is clear clinical evidence that to carry on would cause you further problems or for some reason it stopped working. I have the contact name of theperson who it seems would beonly to please to get involved with anyones case personally

So I believe that anyone taking it would not have any problems if NICE fail to give the go ahead.
I hope that this may give some comfort to those taking these TKI's and were worried.

I am on a glivec holiday till tomorrow when I start Nilotinib. My Consultant at HH has assured me that once started on a new regime it can't be taken away.

In the scheme of things ther are only about 200 patients involved so we are not taking huge sums of money.

Steven D