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A kidney

NICE have decided not to approve three drugs to treat advanced kidney cancr

In April we wrote about the decision by the National Institute of Health and Clinical Excellence (NICE) not to recommend three new treatments for advanced kidney cancer on the NHS.

Today NICE have announced their final decision on these drugs.

As regular readers might remember, this time last year NICE ruled that none of four new drugs, bevacizumab (Avastin), sorafenib (Nexavar), temsirolimus (Torisel), or sunitinib (Sutent) should be recommended  to treat advanced kidney cancer on the NHS.

Since there are very few treatment options for people with advanced kidney cancer, we were naturally disappointed that NICE’s decision would mean that these new treatments, which have shown benefit in clinical trials, would not be routinely available on the NHS.

Sunitinib approved

In response to these concerns, in January NICE introduced new powers for its Committees, known as its ‘end of life’ criteria, and as a result, in February, sunitinib has now been successfully approved for use.

However, last night we found out that the appeal against NICE’s negative decision on the remaining three drugs has been unsuccessful. This decision is now final.

We’re disappointed that none of the manufacturers of the three rejected drugs was able to change their pricing policy so that NICE could recommend the drugs for use on the NHS.

Muddy waters

But we’re also frustrated with how – in the case of bevacizumab – NICE have chosen to interpret the ‘end of life’ guidance. NICE agreed that the other drugs in this example qualify under NICE’s criteria by which extra ‘weight’ is given to drugs which are shown to prolong life, at the end of life, in relatively rare conditions.

But because bevacizumab is also licensed for breast and bowel cancer, NICE have ruled that it does not qualify. We don’t think this is in the spirit of the government’s end of life guidance – which was supposed to allow flexibility so that patients get the drugs they need, when they need them most.

It seems that far from clarifying things, this decision has further muddied the waters over these guidelines.

But ultimately, our worry is that innovative treatments are not being made available on the NHS, and we would like to see both the drug manufacturers and NICE do much more to help patients in need.

Looking to the future

Although this is the end of the line in terms of NICE’s appraisal of these particular treatments, we hope that NICE will continue to review the way that it considers new drugs, particularly for a complex disease such as cancer, and where patients with few or no other treatment options can be given crucial extra months at the end of their lives.

At a time of increased scrutiny over health budgets, we completely understand – and support – the need for an organisation to make decisions about which treatments the NHS should spend its money on.

But these decisions need to be made in a consistent, timely and transparent manner, in the best interests of patients.


Jon Spiers is Cancer Research UK’s Head of Public Affairs and Campaigning


Rose Woodward September 15, 2009

Thank you for this Jon, You will know that kidney cancer patients groups are appalled and outraged at the latest decision by N I C E to refuse treatment to patients who are not suitable candidates for Sunitinib. I was at the N I C E appeal for the kidney cancer drugs on behalf of the James Whale Fund for Kidney Cancer and it was our “expert witness Oncologist ” who raised the issue of this totally unreasonable way of assessing end of life drugs for rarer cancers and the new guidance which N I C E has been given. We asked the question – are the appraisal committee saying that if an innovative cancer drug has been approved for a more common cancer than it will not be approved for rarer cancers. The answer from Chair of the Appraisal Committee Professor Stephens, was an unequivocal “YES !!! that is exactly what it means”. A nice theoretical manipulation of the guidance by a not so N I C E organisation.

What this means in practice for those patients diagnosed with mRCC s is that kidney cancer patients were just very very lucky that we got Sunitinib approved for kidney cancer when we did, because had been approved for say breast or bowel cancer before being assessed for mRCC, then, yet again, cancer patients with rarer disease would have been denied treatment.

I & many other cancer patients find this sort of policy game playing with patients lives deeply offensive. It may seem clever in the rarefied atmospheres of the N I C E & the NHS committee meeting rooms, but it is cruel and callous in the extreme.

What more desperate things can they possibly do to a group of terminally ill cancer patients?? First you have to come to terms with a diagnosis of a terminal illness, then you have to come terms with the fact there is a treatment available but you are not worthy of it, now you can have both these situations to cope AND you are told the NHS will pay for that treatment but not for you because you have the wrong type of cancer.

I despair of this NHS sometimes.