Hello all,
I have today recieved a reply from my MP, John Bercow the Seaker of the House of Commons.
He thanks me for contacting him. He says:
I fully understand your concernabout NICE's refusal to allow the drug dDasatinib as a second line treatment for new patients for Chronic Myeloid Leulaemia. I have now written to NICE and the Department of Health about Dasatinib & Nilotinib and I will be in contact again as soon as I have recieved a reply.
Yours Sincerely
John Bercow
Hopefully if enough of us write we might get somewhere.
I was at the hospital yesterday & saw Jed's article in the Daily Mail, this is just the sort of publicity for the cause that we need, & my congratulations to both Jed & Bhiru for getting into the National press, I know how hard it can be.
When I was speaking with my consultant yesterday, she said that she & her colleagues had jointly made a response to the NICE appraisal. She did say that they all believed that the cost question was the overiding aspect of the NICE document, & that their trial requests were unethical.
I had my first bone marrow test yesterday since switching to Dasatinib in september. I should get the results on the 23rd December, & am hoping for an early christmas present
Bob
You are here
Reply from the Speaker of the House of Commons
Dear Bob
My MP is also John Bercow and I received an identical letter to yours. I've met the guy a few times and he does have a declared interest in disability issues. Lets hope it does some good. Also although not the dizzy heights of the national papers, my son (17 with CML diagnosed 2 years ago) and I have a large piece in the Bucks Herald this week. It is written from a very human angle. I have also heard from Bucks PCT who informed me that we can apply for 'exceptional funding' if the time comes. I'd much rather not have the hassle thank-you very much.
Keep up the good work
Sarah
Thank you for your email and for sharing with me your concerns about the consideration by NICE to withdraw approval of these "second generation" drugs (Dasatinib & Nilotinib).
I understand how distressing this situation must be for you and I will be pleased to write on your behalf to the Secretary of State for Health asking for his comments in response to the points you have raised and as soon as I have received a response, I will be in touch with you again.
Vickie
Dear Sarah,
I have just read your story in the Bucks Herald, well done a very nicley written story.
I do hope that all continues to work well with your son on Imatunib, & that you never have to face the alternatives.
In some ways I am lucky that I failed on Imatunib when I did, & have now switched to Dasatinib, but the fight must go on for those who come after me.
Best Wishes
Bob
Here's my answer from my MP:
It was kind of you to let me have your views.
I can wholly understand why you are so concerned and you have my utmost sympathy. It is extremely disturbing to know that there are beneficial, but unavailable, drugs and you have my full support.
In view of the serious nature of the issues you raise, I will write today to the Secretary of State for Health. I will let you know as soon as I receive an answer
Etc
My very elderly mother wrote to her M.P., Michael Mates and this was a very scant letter as she didn't speak to me about it first. However, not only did she get an immediate response from him, but he has said that he will take it up with the Chief Executive of NICE. Michael Bates is an extremely active M.P. and I do think he will do his best to be heard and he will get back to her with a response.
Vickie
I had an interesting reply from my MP Robert Key who has been very active in Health issues, select committees, etc. He stressed the importance of NICE being independent and making decisions only on clinical grounds not political ones, but highlighted the intended Conservative policy of value based drug pricing.
Looking on the Conservative Party website it appears that the policy in this kind of situation would be that rather than NICE just saying 'No' to the drugs they'll go back to the drug company and say 'This is what we're prepared to pay for it' and then it will be up to the drug company to decide whether they are prepared to supply at that price.
As I said, interesting...
Phil