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Letter received today from my MP from Sir Andrew Dillon Chief Executive NICE

NHSI
8 June 2011 National Institute for
Health and Clinical Excellence

Dear Mr Clappison
Thank you for your e-mail received on 17 May 2011, on behalf of your constituent Steven Davies regarding our draft guidance on dasatinib, high- dose imatinib and nilotinib for the treatment of imatinib-resistant chronic myeloid leukaemia (CIVIL).
We know that our draft proposals have caused a great deal of distress to people living with this condition, as well as those who care for, and who treat them. We are aware that is not what patients had hoped for, and I would like to provide reassurance that the independent Appraisal Committee will give full consideration to all comments received on the draft recommendations. Although it would not be appropriate for me to respond to the individual points that have been raised during this consultation period, I do think it's important for me to address a number of common concerns that have been raised by you and also by other MPs on behalf of their constituents.
Firstly, the draft guidance relates to the treatment of imatinib-resistant CIVIL only. It does not include dasatinib and nilotinib for the treatment of CIVIL in people who are intolerant to imatinib, and the recommendations do not suggest that standard-dose imatinib for first-line treatment should be stopped. For those patients that are currently receiving dasatinib, high dose imatinib or nilotinib, I would like to provide reassurance that our draft guidance does not mean that these treatments will be withdrawn. Our draft guidance recommends that they will have the option to continue treatment until they or their clinicians consider it appropriate to stop.
Secondly, our appraisal process is designed to produce robust evidence- based recommendations for the NHS that take into account both the clinical and cost-effectiveness of a technology as well as a wide range of factors including comparisons with other available treatments and potential subgroups that may require special consideration. Part of the Committee's role is to make a judgement on whether or not the technology should be recommended as a clinically and cost-effective use of NHS resources. Giving consideration to any limitations of the evidence base forms part of this decision process.
On the issue of cost and availability in other countries, it is important to note that the Committee can only make a decision using the price available at the time of the committee meeting. The availability of drugs in the UK compared to other countries differs as different healthcare systems fund the provision of drugs to reflect their own unique circumstances and priorities. Although it may be true that the drugs in this appraisal are available in some other countries, it may not be the case that it is available free at the point of use.
With regards to concerns about the relevant experience of the Committee, the Appraisal Committees are standing advisory committees of NICE and members are appointed for a 3-year term. Although this Committee does not include a standing cancer specialist, Professor Jane Apperley, Professor of Haematology and Professor Richard Clark, Consultant Haematologist were invited to and participated in the Committee discussions and provided evidence to inform the deliberations. They gave their expert personal view on dasatinib, high-dose imatinib and nilotinib for the treatment of chronic myeloid leukaemia by attending the initial Committee discussion and/or providing written evidence.
Finally, it is important to note that we have not yet issued final guidance to the NHS. Until NICE issues final guidance, local Primary Care Trusts are expected to make their own decisions about whether or not to provide the drugs, based on their own assessment of their effectiveness. Consultants who feel that the above drugs may work better in an individual patient than the available evidence suggests are able to apply for exceptional funding from their local PCT or from the Cancer Drugs Fund.
Following the close of our consultation, the Committee will meet again on 9 June 2011 to discuss the response to our draft guidance. Whether or not the final guidance is different from the draft recommendations, the members of the committee will be fully aware of what you and your constituents think about this important decision.
Yours sincerely,

Sir Andrew Dillon Chief Executive

A few things we (and the consultees) might take issue with but also some interesting subtle points in here eg reference to "price at the time of the meeting". Now why did he say that?

Hi Steven, Richard,
yes.... probably because they were looking for a deal on price, and as we all heard at the June 9th meeting, they got one -at least from one company. I assume there are deals now being done behind the scenes. I smiled when I read his rather 'weak' argument that although the drugs are available in 'some' (actually 90) countries that not all have health systems that provide drugs 'free' at the point of use. I didn't think we got our service for 'free'! I thought we paid into a national insurance scheme which like all insurance schemes uses the concept of 'pooled risk' i.e you pay your money and during your life-time you might or might not need to make a claim- my dad has only just retired (at 86) from full time work and has never ever made a claim for treatment.... so you could say he donated all his NI contributions to others like me who needed expensive treatments like transplantation. The idea that our health service is 'free' really gets me going as you might have gathered ;o)

Anyway back to the Dillon letter. To me (and David) the content of the letter is interesting only in that although it trots out the usual default arguments like pct's and cancer drug fund etc, it does show that our campaign was even then having some effect. It was written before the June 9th meeting.

Best... Sandy

At long last I have received a copy of a letter sent by my local MP- Lynne Featherstone, (Jumior Minister for Equalities in Home Office) to Sec of State for Health.
I must say it has taken her a while so I assume she suddenly became aware that this was an issue - given the EDM and PQ's- so political pressure is still being exerted which is important, but I assume that it is really a 'price deal' offered by the pharma co's involved that might push this in our favour.
Sandy

I really struggle with Dillon saying "our appraisal process is designed to produce robust evidence- based recommendations for the NHS" when the ACD talked about the "least implausible analysis" as the basis for the draft recommendation. I'm not sure who he is trying to kid, but its not working for me.

I returned home last night to find a reply to my MP from Andrew Dillon and a reply from the DoH to my letter to Andrew Lansley. The latter did not deal with the points made in my letter - in fact it seems to have missed the key ones which were that the appraisal process doesn't work for reviews like this one (or at least this one didn't work) and failing to explain why it makes any objective sense that England and Wales are just about the only places in which the drugs would not be available. The author restates a load of stuff we all know already - telling me that there is a consultation (and how to participate!), about the cancer drugs fund, about how to seek individual funding, that NHS matters in Scotland are devolved, other countries fund differently etc - all of which is I suppose mildly insulting to the intelligence and illustrates that they missed the point. I might reply along those lines - but it probably won't achieve much so I am going to wait until the FAD is published.

Same with Dillon's letter - which is identical to the one Steven received but I think at least recognised some of our concerns, or more importantly perhaps demonstrates that we are being heard, even though there are several points with which we all disagree in his reply.

Oliver Letwin my local MP replied to my letter basically saying that he has no influence over NICE but did show interest in the matter and said should I fail on Imatanib I was to contact him.
So our pressure has got into the centre of the Governement.
Barry