James Whale Letter to all 600+ MP's

[The Fund]

Last week the Fund sent a personal letter from James Whale to all the MP's in Parliament - a personal hard copy letter was mailed individually to all the members explaining the Charities position about the recent refusal by N I C E to approve Everolimus for end stage kidney cancer.

This is the letter....................................................



James Whale Fund for Kidney Cancer
House of Commons 46-48 King Street
London CAMBRIDGE
SW1A 0AA CB1 1LN


5th July 2010
Dear

You will by now have seen in the press that the National Institute for Health and Clinical Excellence (NICE) has rejected yet another kidney cancer drug. They have made the decision that the drug everolimus (Afinitor®) is too expensive to fund as a second-line treatment for late-stage kidney cancer, despite its proven effectiveness at prolonging the life of kidney cancer patients. The decision by NICE to reject everolimus means that terminally ill kidney cancer patients will have no access to the only effective licensed second-line treatment option after failing on sunitinib (Sutent®). NICE has acknowledged that everolimus is clinically effective and meets the ‘end-of-life criteria’ but yet still made the decision not to reimburse everolimus on the grounds of cost alone.
Kidney cancer accounts for approximately 2% of all new cancers in the UK (more than 8,000 people), and the incidence of kidney cancer is increasing. Kidney cancer is particularly difficult to treat and does not respond well to conventional cancer treatments, such as chemotherapy and radiotherapy. Once kidney cancer spreads, the new targeted therapies, such as everolimus, are the only hope for these patients. NICE’s decision leaves clinicians with the choice of only one drug (sunitinib) with which to treat terminally ill kidney cancer patients. If this drug is not effective or the patient is unable to tolerate it’s side effects, patients are left with three choices; pay for a different drug themselves, appeal for funding (these are invariably rejected by the local funding bodies who follow the lead of NICE), or wait to die. Appeals for funding can take anything up to 6 months to complete, during which time patients are receiving no active treatment.
It has been shown that late-stage kidney cancer patients given sequential drug treatment with the new targeted therapies have the best prognosis for survival. NICE’s decision is denying patients this treatment option, which offers some hope and comfort to both patients and families trying to come to terms with a terminal illness. The UK’s cancer death rate is currently 6% higher than the European average; NICE’s decisions are having a profound effect on the way we treat our cancer patients and the quality of health care available to our citizens. It leaves UK kidney cancer sufferers at a major disadvantage in terms of the availability of state-of-the-art cancer drugs, meaning that these patients are likely to die prematurely compared to the rest of Europe and the United States of America.
As a country, our health care system is falling behind that of the majority of Europe because we are only able to offer sub-optimal treatment to those patients who need it the most. The new coalition Government has pledged to improve access to new and innovative cancer drugs through the provision of the Cancer Drugs Fund. This was a key point of the Conservative’s election campaign, made after David Cameron’s meeting with one of his constituents, Clive Stone, at his home during the election. Clive is a kidney cancer patient who successfully fought for access to sunitinib for first-line treatment of kidney cancer.

This recent decision by NICE appears to contradict the new Government's commitment to improve access to drugs for all patients with cancer. However, although the new Government has proposed the Cancer Drugs Fund, it does not come into force until April 2011; too late for the 3,300 or so kidney cancer sufferers who will die in the meantime.
We would also like to see a complete review of NICE procedures, which are based on out-moded and unsuitable assessments. For example, the Quality Adjusted Life Years (QALY) measurement, which is used in assessment of cost effectiveness for all cancer drugs, is based on a threshold of £30,000 set in 1999. These assessments have time and again been shown to be unfair to many cancer patient groups, denying patients access to life-prolonging treatments during a difficult time for both themselves and their families.
We implore you to take action for the thousands of kidney cancer sufferers in the UK today who now have very little hope during the last few months of their lives. Please raise the issue of NICE’s decision to reject all but one kidney cancer drug for reimbursement on the NHS during parliamentary questions as soon as possible; the quality of health care for cancer patients offered by the NHS is already starting to fall behind that or our European counterparts in terms of access to new and innovative cancer drugs.
We would like to invite you to meet with the James Whale Fund to discuss this issue further and to determine ways in which we can progress our fight for access to kidney cancer drugs. Please ring Sarah Ridge on 0844 474 5050 or email on sjr@jameswhalefund.org to arrange a meeting.
About the Fund:
The James Whale Fund is the UK’s leading kidney cancer charity and was set up in 2006 by the broadcaster James Whale, who lost a kidney to cancer in the year 2000. Today James continues to lead a full and busy life, as do the majority of people who are diagnosed and treated early. Every year over 8,000 people in the UK learn that they have kidney cancer; that’s almost 22 people a day. And yet the condition – the seventh most common cancer among men – rarely attracts much public attention. Our mission at the James Whale Fund is to try and change that.
For more information about the James Whale Fund for Kidney Cancer please visit http://www.jameswhalefund.org.
Yours sincerely

James Whale



James Whale Fund for Kidney Cancer is a Trading Title of James Whale Fund Ltd
Reg Office: The Mews, The Park, Cambridge CB21 4RD.
Company No England & Wales 05937304
Charity No 1120146