Can any one help me with some information,I have had Chonic CML since Dec 2001 and been on imatinib since May 2002, but I have now got resistance to imatinib. I have gone through two E.F Panels and been refused both times for Dasatinib and Nilotinib by South Glos PCT in Bristol. What I want to know is what is the way forward to get these drugs, i.e is there any other way to get these drugs seeing that the NHS will not fund them until they have been through NICE.
Regards
Martin Moss
Hi Martin, Sorry to hear that you are having problems with funding. If you look under news section Sandy posted some information on 1st Aug - title Applying for NHS Exceptional Funding for Treatment.
Hope this helps with your application. Somewhere on the site Sandy has posted sample letters. but I can't find them! Sorry.
My consultant is going through the same process for me at the moment with a PCT in south London. In the meantime I am on Nilotinib trial, drug funded until early next year.
Good luck with the 'fight.' When I was fighting for Imatinib my local MP was very helpful, it is worth trying to get yours on side.
Pennie
Dear Martin
I am sorry you have not been able to get a positive funding decision from South Gloucester PCT.
As Pennie has suggested you can take a look at the excellent booklet that Peter Telford (Barrister) has written to advise consultants on how they should apply for exeptional treatment for their patients.
I have reposted this link on the right hand side of this page under Newswire... all Newswire postings are saved under the News section on the left hand menu.. just scroll down and you will find other articles/links about the present 'post-code lottery' in parts of England.
If you feel your consultant has already followed the advice contained in the booklet then you may want to try other ways of bringing your case to the fore.
One way is to enlist the help of your local MP who would probably be very interested given that the local PCT has refused you therapy and you have no alternative therapeutic options.
You should try to see the MP asap... preferably face to face at their surgery. I also suggest that you write to the Department of Health and get your doctor to write too.
Your should contact your local newpaper and let them have your story.... I am sure they will be only too keen to help. If there is any way to publicise your case you should do it... local radio etc. and even national media.
I have updated the letter template which can be used as a basis for writing to your PCT/doctor/DH concerning funding refusal.
You can access the link to the template on the RCF report on postcode lottery under newswire Dec.19th
Please let us know if we can be of further help.
Sandy
