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Refusal to fund Tasigna.

Just back from Kings appointment with the shocking news that Sutton and Merton PCT have refused funding for my Tasigna when the trial ends next month.

The doctor was as shocked as I was, he said that they had thought all battles for CML drugs were over. Sutton and Merton PCT is the only PCT that has refused to fund a Kings patient on Tasigna, every other patient is getting funding from next month. Kings have taken the request right through to 2nd level refusal, and the final decision is no. Must say that Kings have been great at keeping all this from me for the months they have been working on it. Still I do feel as if the rug has been pulled from under me.

Not sure what to do next, Bill and I are still to shocked to think straight. Just feels as if the bean counters always win.

Does anyone else on Tasigna live in the Sutton and Merton PCT area? and have you got funding? Please let me know as I will need all the facts I can gather to put an argument forward to them.

The really crazy thing is that Tasigna dose I am on is 205 cheaper than Glivec would be - and they would have to pay for that as its been passed by NICE !!!!!!!!!!

Any help, advice or suggestions please let me know

ATB
Pennie.

Shows what a state I am in to make such a wopping mistake!

pennie

Hi Pennie....... I hope the advice I sent provately is of some help. I have checked the links to the template letter etc. and they work but sent you copies just in case. You should always check under the 'Essential Reading' section on the main menu. Most things are stored there. But as I told you I have also uploaded other stuff that might be of help.... DH guideline etc.

I am repeating the advice I gave you privately on this forum so that others who are in the same position might benefit and also because I think it is more helpful if we are discuss openly that this is going on. Thanks for posting about your experience here, I hope we can all help you on your journey to get the treatment you need.

Peter Telfords Booklet on right hand side is a guide to help you through the process. You need also to urgently educate your doctor about the process he needs to go through if he is to appeal the PCT's decision.. and that he needs to do this too. See RCF guide for consultants 'A Patients Right To Treatment'

Your should urgently see you MP face to face at the weekly (fortnightly) surgery. You can find the info online if you know the name of your MP.

Also... do consider trying to interest local newspaper/media in your case. As you say... the PCT would save money in your case and you are probably the ONLY CML patient they have who is on Tasigna... you need to show the folly of their decision and shame them. That might be all you have to do to get funding.

NICE MTA of dasatinib and nilotinib is in process now..CML Support Group have been invited as consultees along with LRF, Leukaemia Care and Macmillan Cancer Care BUT... there will not be a decision until April 2010!
So there will be problems for some patients in some areas of England for some time to come.

Doctors also need to be proactive in these cases. Make sure yours are fully up to speed.

Sandy

Thanks Sandy
The info is very helpful, and I will read and try to make sense of it when I calm down a bit.
Thought this battle for CML drugs was over - foolish or what.

If anyone else is having problems do get in touch, as we discoverd when fighting for Glivec there is strength in numbers.

Have been in touch with my MP today and she is writing to PCT. First shot fired!
Thanks to all for help and support.

Still feeling knocked but I will find my strength soon and come out fighting!

ATB
Pennie.

Hi Pennie,

Just to say that I am thinking of you & your battle with your PCT. It makes me realise how lucky I have been with my PCT funding, but is so unfair that others like yourself have to fight your case. I managed to get the backing of TWO Profs from separate CML specialist centres who supported my application for special funding. Maybe this is a route you could try as well? Is bad enough having CML without the worry of funding for the drugs, especially as you have been involved with the trial. I hope you win through.

Keep those energy levels up and keep the shots firing! I am sure we are all behind you 100%.
All the best
Ali.

Hi Pennie,

As a fellow Merton resident I just wanted to let you know that you are in my thoughts at the moment with everything you are going through.
My husband has CML and was recently faced with the possibility of moving off imatinib onto one of the other drugs. Although it now transpires that he is ok to stay on imatinib, I had previously contacted Siobhan McDonagh, our local MP about funding. And although the response from the PCT was a standard one, she was much more positive about supporting us if we needed to fight a case on an individual basis.
So fingers crossed - I hope you also get a supportive response. And if it helps to have another signature from a merton resident to back up your case please don't hesitate to ask - I'll be in there guns blazing to back you up.

Bhiru

Thanks for your offer of support. I might take you up on that soon. Went to see Siobhan McDonagh on Friday, she was very supportive. Hope her contact with the PCT might bring about a change of decision - fingers crossed.

Sorry to hear that your husband has CML, but pleased he is doing OK on Glivec/imatinib. Hope he long continues to do so.

How long has he had CML? and where is he treated? Perhaps you would both like to meet up for a coffee once this panic of mine is over. I know it will be over with a positive outcome. IT WILL.

Thanks
Pennie.

Hi Pennie,
Glad to hear Siobhan was supportive. And if you do need backup please don't be shy to ask. I know if we were in the same situation we'd do whatever we needed to fight the bureacratic madness that interferes with treatment decisions. If you want to contact me off the forum my email address is bhiru21 at hotmail dot com.
My other half (he properly becomes my husband in two weeks!) was diagnosed in April 07. Currently on 600mg and last month had his first PCR below 1 which felt like a major hurdle crossed. He's treated at Hammersmith after transferring there from Barts and we are much happier with his current consultants. I'd definitely be up for coffee, so please do get in touch. I hope your panic doesn't last too long, and am glad to hear your optimism.
Bhiru

HI Bhiru Tried emailing you and the address won't compute ! is it bhiru@hotmail.com ?

You can email me at pennie.douglas@blueyonder.co.uk

Good luck with the wedding, and perhaps we can meet up for coffee when you have a moment after the celebrations.

Pennie