Bhiru's husband, Jed, here:
I've just received the following email from the Department of Health. A similar response has been sent to a number of my friends.
It's a bit of a fob off.
I am, of course, going to reply, highlighting the mistakes made in NICE's decision-making process for this ACD. That is something they can put pressure on NICE (or their chief exec) to get right.
If any of you have any comments on what to add, or want to send your own reply (at DHMail@dh.gsi.gov.uk), please feel free to do so.
I would also like to add that sending a template letter to all my friends and family (along with the link of how to find their MP) so that they can email (and post if possible) their MP has had a fantastic response. I would very much encourage others to do the same, also asking them to send it on to whomever they know. This can have a real snowballing effect.
Jed
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Dear Mr Alexander,
Thank you for your email of 30 November to Andy Burnham about the availability of dasatinib and nilotinib for the treatment of chronic myeloid leukaemia (CML). I have been asked to reply.
I am sorry to hear about your condition and I understand that this must be a worrying time for you.
I should stress that the National Institute for Health and Clinical Excellence (NICE) has not yet published final guidance on the use of dasatinib and nilotinib. NICE has recently issued draft guidance that does not recommend the use of dasatinib and nilotinib for the treatment of CML and registered stakeholders now have until 7 December to submit comments. NICE’s Appraisal Committee will then meet to consider the responses to the consultation and NICE currently expects to issue its final guidance to the NHS in April 2010.
NICE is an independent body, which makes decisions on the clinical and cost effectiveness of products based on a thorough assessment of the available evidence involving extensive consultation with stakeholders and in the context of a finite NHS budget. Some of these treatments cost thousands of pounds, so NHS bodies must find a balance between funding expensive drugs for a limited number of patients and providing services and treatments that will benefit many other people.
The Department of Health recognises that the Institute’s decisions have serious implications for patients and their carers. These are very difficult decisions and they are made only after careful consideration.
It would therefore not be appropriate for Ministers or officials to intervene in an ongoing appraisal. However, several patient groups are registered stakeholders in this appraisal and you may wish to raise your concerns about NICE’s guidance with one of these organisations. Details of stakeholder organisations can be found on the NICE website at www.nice.org.uk by typing ‘CML’ into the search bar.
Where NICE guidance is not yet available for a treatment, the NHS Constitution gives patients a right to expect local funding decisions on the availability of drugs and treatments to be made rationally and on the basis of the available evidence. NHS organisations are also required to have processes in place for the consideration of exceptional cases even where NICE has not recommended a particular drug or treatment.
Yours sincerely,
Paul Larkin
Customer Service Centre
Department of Health
