8 February 2007
I write to ask for your help in ensuring that valuable drug therapies to treat kidney cancer are made available to patients in the NHS.

In the year 2000, I was diagnosed with kidney cancer. The treatment options open to patients with kidney cancer were, and remain, limited. Indeed the chances of detecting the condition early are relatively small.

I was lucky, because I was diagnosed early enough to receive successful treatment. My left kidney was removed and, six years on, I am still in full remission. I continue to lead a busy life, as do the majority of people whose kidney cancer is diagnosed and treated promptly. However, this is often not the case, and a large percentage of kidney cancer patients only learn that they have the disease when it is too late.

It was for this reason that I took the decision to establish the James Whale Fund for Kidney Cancer. Every year almost 6,200 people in the UK learn that they have kidney cancer and yet the condition - one of the fastest growing of all cancers - rarely attracts much public attention. Our mission at the James Whale Fund is to try and change that by:

• helping to reduce the incidence of kidney cancer by increasing knowledge and awareness, and by supporting research into the causes, prevention and treatment of the disease

• providing a support network offering advice, information and encouragement to those who have been diagnosed with kidney cancer, and their carers.

One of the areas that is causing us most concern is the lack of access to new drug therapies for kidney cancer patients. New drugs, such as Sutent & Nexavar, represent a big advancement in the treatment of kidney cancer and, for many patients, they offer the only treatment option. However we understand that, in many parts of the country, patients are being refused these treatment.

We are aware that sorafenib is undergoing review by NICE but also understand that standing advice from your Department to the NHS is that this should not be used as an excuse not to provide therapies until NICE has made its judgement. Furthermore, Sutent is not, in any case, currently subject to a NICE review.

Whilst, I fully appreciate the difficult decisions that local NHS healthcare trusts have to make with limited resources at their disposal, it is surely unacceptable to deny patients access to these treatments, in the absence of any advice to suggest that they are anything other than fully clinically and cost effective.

I would be grateful for your comments on this situation and your intervention to ensure that appropriate treatments are made available to patients who have little hope of any other intervention. Should you require further information on this situation or on the work of our charity then do please contact me. I look forward with interest to your reply

Yours sincerely,

James Whale

15 February 2007
Dear Mr Whale,

Thank you for your letter of 5 February to Patricia Hewitt about the treatment of kidney cancer. As you will appreciate, Ms Hewitt receives a large amount of correspondence and cannot answer all of her mail personally. Your letter has been passed to me for reply.

You may be interested to know that a new Cancer Reform Strategy is in the early stages of development. The Strategy will build upon the achievements of the NHS Cancer Plan (published in 2000), encouraging best practice and making recommendations to improve the performance of cancer networks and the NHS. This in turn will improve clinical outcomes, drive up quality and increase value for money.

A board has been established to advise on the development of the Strategy. The board will be supported by a number of new working groups responsible for developing specific aspects of the strategy, including a working group to look at awareness of cancer symptoms and early detection.

Turning to your concerns about the availability of Sutent and Nexavar, I should explain that both of these drugs are licensed in the UK to treat advanced renal cell carcinoma, when standard therapy has not helped stop the disease or it is considered unsuitable for the patient.

There are no national restrictions on the prescription of either drug on the NHS. Department of Health guidance, revised and reissued to the NHS in December 2006, advises NHS organisations that until the National Institute for Health and Clinical Excellence (NICE) has published final guidance on a treatment, NHS bodies should continue with local arrangements for the managed introduction of new technologies. These arrangements should involve an assessment of the available evidence and the guidance identifies potential sources of such information. Funding for such treatments should not be withheld simply because of an absence of guidance from NICE .

I hope this reply is helpful.

Yours sincerely

Stephen Atkinson
Customer Service Centre
Department of Health