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Dasatinib & Nilotinib Approval - MP Response

I have now received an answer to my letter to my MP requesting the Government to accelerate NICE approval for Dasatinib and Nilotinib.

The reply from the Minister, Dawn Primarolo MP, is quite long and, to be quite frank, I am not sure what she is saying except they do not appear to doing anything to speed up the process which will take at least 62 weeks.

It does include the following clear statements:

"Dasatinib is licenced by the European Medicines Agency and, as such, can be prescribed on the NHS by UK clinicians"

"Once NICE guidance is published, PCTs must provide funding within 3 months"

This paragraph is important and I have copied it verbatim:
"In December 2006, we issued updated guidance to the NHS on managing the introduction of new healthcare products in the absence of NICE guidance. The updated guidance also provided further clarification on the funding obligations of PCTs and NHS Trusts concerning the implementation of technology appraisal guidance issued by NICE. It is not acceptable to cite lack of NICE guidance as a reason for not providing treatment."

And: " However, we have made it clear to PCTs that they should not refuse to fund treatment solely on the grounds of cost but should consider all the circumstances before making a decision"

Thanks for posting that. I haven't recieved a reply yet, but no doubt it will be exactly the same as yours.
The question that needs asking after that response is: well what are you doing to ensure that the PCT's refusing to prescribe Dasatinib reassess their decision?

Hi John and Dennis,

I too have had replies to my letters. One from a civil servant at the DH which told me very little that I didn't already know, and one from my local MP who kindly included the response she had had from the health minister Dawn Primarolo who she had written to on my behalf.

I think it is probably the same response as John's MP received but I noted this crucial paragraph.
"....As Ms Craine is aware, we have referred Dasatinib and Nilotinib for Imatinib-resistant chronic myeloid leukaemia for appraisal as part of the ... NICE... multiple technology appraisal programme."

Actually I was not aware that the referral had now gone through to NICE but I welcome that information.
However:
another paragraph states that
"The length of time it takes NICE to carry out a standard appraisal of a treatment is around 62 weeks from the time of referral."

So, I will now be writing again to the minister to ask for clarification of the following points:

a. What was the exact date the Sec. of State referred Dasatinib and Nilotinib for NICE appraisal?

b. Is the 'multiple technology appraisal programme' within the same timeframe as a "standard appraisal" i.e. of around 62 weeks from the date of referral?

c. If not then what is the timeframe that we can expect for a MTA?

I consider this information to be of crucial importance for Glivec resistant patients within the UK who cannot get access to Dasatinib.
For obvious reasons such patients need to assess the timelines when considering their next steps.

I will copy the letter to my MP and will also try to see her at her next surgery to discuss how she may be able to help further.

# I have recently heard some good news from a patient who was in a very challenging situation regarding access to Dasatinib. He was not helped by Nilotinib either and had little choice of an alternative therapy, but still could not persuade the PCT involved to fund the drug.
However, with some determination he and his family have managed to overcome this decision and have now heard that the PCT will fund the drug (but only in his case).

If anyone is struggling with the same or a similar situation and cannot access Dasatinib then this patient and his family will share their experiences and advise you about the best and most appropriate steps to take.
This will be done privately of course, but if anyone needs this sort of help then please contact me through this website -the 'contact us' email comes directly to me - and I will pass on your message.

I would like to say thank you to all of you who continue to take an active interest in this situation and are willing to contact your MP's.

I will update this site with more information as and when I receive it.

Best wishes,
Sandy ;o)