The Renal Disease Sweepstakes

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  • 02/26/2007
The British have always been fond of the Irish Sweepstakes. Unfortunately (and once again) NICE and the NHS are asking patients with kidney disease to play the Renal Disease Sweepstakes.

Should health care really be a crap shoot with terrible odds?

Kidney cancer victims denied "wonder drugs"

The Sunday Times (London) By Daniel Foggo and Sarah-Kate Templeton;
25 February 2007

Two new "wonder drugs" with the potential to prolong the lives of thousands of kidney cancer sufferers are being denied to National Health Service patients because they are too expensive.

The drugs, Sutent and Nexavar, have been shown to shrink tumours dramatically, with some disappearing altogether. Both have been licensed for use in Britain but the NHS has so far declined to issue guidance that trusts should fund the drugs.

Without such guidelines, patients are dependent on the judgment of individual NHS trusts deciding whether or not they can afford the treatment, which costs about £2,500 a month. Some cancer sufferers have been forced to sell their houses or cash in pension schemes to pay for the treatment.

The situation has been likened by doctors to the furore over Herceptin. The breast cancer drug was not routinely prescribed until August last year, following intervention by Patricia Hewitt, the health secretary.

Nicholas James, consultant in clinical oncology at Queen Elizabeth hospital, Birmingham, said of Nexavar: "Patients with this cancer tend to die quite quickly but I know from my own patients who were on the trial how well this drug works. They are still alive two years later."

Despite the enthusiasm of doctors, the National Institute for Health and Clinical Excellence, which draws up the NHS's policies on whether trusts should fund medicines, has so far set no timetable for assessing the two kidney cancer drugs.

As a result, patients can obtain the drugs only through a private doctor or by asking their GP to plead their case individually to primary care trusts (PCTs).

Kidney cancer, which is diagnosed in about 6,600 people each year, has a death rate of more than 50% and is difficult to treat, with both radiotherapy and chemotherapy of little use.

Until the development of Sutent and Nexavar, which both work on the principle of starving tumours of their blood supply, the only viable treatment was the drug interferon alpha.

But in trials of Sutent it was shown to more than double the time tumours remained static in size compared with interferon. Nexavar had similar results.

Professor Robert Hawkins, an oncologist at Christie hospital in Manchester, who conducted a recent Sutent trial, said: "We have had a couple of patients where the cancer seems to have disappeared altogether." At least one patient -- who served in the RAF -- is seeking judicial review over the drug. It was similar action over Herceptin that contributed to its approval as an NHS drug.

Janine Handrick, 35, a travel adviser and mother of five-year-old Madison, is one patient who, with her GP, managed to persuade her PCT in Doncaster, South Yorkshire, to put her on Sutent in December.

"I was diagnosed with cancer last March when they found lumps on my right kidney and in my coccyx," she said. "They removed the kidney but it had spread to my bones and lungs. When the nurse told me they had found tumours, I asked if I would die and she just nodded.

"When my doctor told me they had decided to give Sutent to me, I was ecstatic, although I won't know how effective it is until I have a scan in another six weeks."

Mark Franklin, 39, a builder from Buckinghamshire, was also facing death when he was included in a trial of Sutent last June. The cancer had spread from one kidney, which was removed, to his ribs, lungs, back and other kidney. Now his tumours have shrunk dramatically and this May he plans to climb Britain's three highest mountains.

"There is no doubt I would be dead now if it wasn't for the trial," said Franklin. "Not making this drug available to everyone on the NHS is criminal."

He is one of almost 1,000 signatories so far to an e-petition on the 10 Downing Street website calling on the prime minister to make Sutent and Nexavar freely available.

A spokesman for Kidney Cancer UK said: "These drugs are available in much of Europe and the US but here it is a postcode lottery. We are taking legal advice on whether PCTs can refuse to prescribe these drugs because of cost."

The real saving, in mortality, misery and expense, would come from earlier detection. My cancer, slow-growing and occupying about one-fifth of my left kidney, was detected by ultrasound, which was administered for another reason. This was some ten years before I should have noticed any symptoms, and before the growth could spread to other organs. Partial nephrectomy, with biopsy of a surrounding margin in the operating theatre, was sufficient. I now have one and three-quarters healthy kidneys. Radical nephrectomy will be needed only if my annual ultrasound shows that cancer has recurred in that kidney, and partial nephrectomy is still in reserve for the other side if cancer should be detected there.

Center for Medicine in the Public Interest is a nonprofit, non-partisan organization promoting innovative solutions that advance medical progress, reduce health disparities, extend life and make health care more affordable, preventive and patient-centered. CMPI also provides the public, policymakers and the media a reliable source of independent scientific analysis on issues ranging from personalized medicine, food and drug safety, health care reform and comparative effectiveness.

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