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Now a letter from Earl Howe, Parlimentary Under Secretary of Stae for Quality (Lords)

From the Earl Howe
Parliamentary Under Secretary of State for Quality (Lords)
Department of Health

James Clappison MP House of Commons Westminster
London SW1A OAA
13 JUN 2011
Dear James (handwritten)
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Thank you for your letter of 16 May to Andrew Lansley enclosing correspondence from your constituent Mr Steven Davies of , Elstree, about the National Institute for Health and Clinical Excellence (NICE) appraisal of dasatinib, nilotinib and high-dose imatinib for the treatment of chronic myeloid leukaemia (CML) that is resistant to standard-dose irnatinib. I am replying as the Minister responsible for this policy area.
I was sorry to hear of Mr Davies' illness and I can understand that this matter is important to him.
I would like to stress that NICE has not yet issued its final guidance on the use of these drugs to the NHS. NICE published draft guidance for consultation on 6 May and was unable to recommend these treatments as a clinically and cost effective use of NHS resources. The draft guidance was open for public consultation until 27 May.
Further information is available from the NICE website at http://guidance.nice.org.uk by clicking on 'Find guidance', then 'Health topic', followed by 'Cancer' and finally selecting 'Haematological cancer'.
I understand that NICE's draft guidance on the use of these drugs will come as a disappointment to people who have CML and their families. These are very difficult decisions to make and NICE only issues draft guidance to the NETS on the use of a treatment after very careful consideration of the available evidence and wide consultation with stakeholders. I am sure you will appreciate that it would not be appropriate for Ministers or Departmental officials to intervene in an ongoing NICE appraisal.
In the absence of final NICE guidance, or a positive recommendation from NICE, it is for local primary care trusts to make finding decisions based on an assessment of the available evidence and on the basis of a patient's individual circumstances.
However, we believe that there are significant failings within the wider system for drug pricing and access and that is why we have committed to reform the way the NHS pays for branded medicines. This will provide NHS patients with better access to effective and innovative treatments at a price that secures value for the NHS.
The Government's Coalition Agreement set out plans to establish a Cancer Drugs Fund to ensure that cancer patients in England have better access to drugs that can prolong or improve their lives. The Cancer Drugs Fund, launched on 1 April, provides a means of improving patient access to cancer drugs prior to the anticipated reform of branded medicines pricing. We have committed £200million to the Fund in each of the next three years.
Prior to this, we made an additional £5Omillion available to the NETS in 20 10/11 to help patients access the cancer drugs recommended by their clinicians. Between October 2010 and April 2011, over 2,000 cancer patients in England were able to access drugs that would otherwise not have been available to them. Over 95 per cent of the decisions made under the interim funding arrangements resulted in treatment being agreed.
Strategic health authorities (SHAs) have established regional clinically-led panels that will make decisions on the use of the Cancer Drugs Fund, building on existing arrangements. The decisions of these panels are based on the advice of the cancer specialists who are treating these patients. SHAs will be able to provide patients with further details of the arrangements they have in place and patients are advised to discuss treatment options with their clinician in order to decide the best course of action.
I hope this reply is helpful.

(Hand written Signature)

EARL HOWE

Same letter arrived here today via my MP.

My MP forwarded the same letter - which arrived here today and included the letter from Sir Andrew Dillon.

We have also had a reply from Howe which is the same apart from a first paragraph which stresses that Howe is replying on behalf of Andrew Lansley as well has himself. A second para acknowledges the petitions we sent
The rest is the same ;o)

Sandy

I too have received the same letter from Andrew Lansley via my MP - almost exactly word for word.

It doesn't, of course, answer any of the points I made, such as the Scottish question, the inadequacy of NICE assessment procedures to deal with these kinds of drugs, whether NICE or the government is in charge of the NHS or the fact that 90 countries reimburse the cost of these drugs. No doubt the civil servants working for the Secretary of State for Health think it is OK to send a standard word-processed reply full of political waffle to anyone who writes in about this subject. Well, it isn't, is it? The NICE provisional decision means the difference between life and death for some CML patients.

My helpful MP is still waiting to hear from Sir Andrew Dillon. Once he does, I intend to take up the cudgels again and try to get answers to the real points. I do beleieve strongly that we need to keep up the pressure on the politicians and NICE. The more letters they receive on a subject, the more notice they will take. Andrew Lansley and Earl Howe cannot be let off the hook with the letters they are writing. So let's keep writing and keep them on the hook. Let's not forget that they work for us, not the other way round.

Once I am in a position to write to my MP again, I will post it here in case it helps anyone else with writing further letters.

David

We intend to answer the letter from Earl Howe (and Andrew Lansley) asking for answers to the original points contained in our letter. These answers are of course authored by an official- so we will carry on and play the game as the same official will receive another letter from us asking for further clarifications.

Best wishes,
Sandy