Swansea Evening Post (KC) 08-Aug-08

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08:00 - 08 August 2008

The family of a man whose life was totally transformed by a wonder drug has spoken of its fury that thousands of others will be denied the same treatment.John Beynon's daughter Sian Thomas said she is angry patients with advanced kidney cancer are being blocked from having Sutent, despite it being proven to prolong a patient's life.

Sutent costs around £30,000 a year per patient and can improve people's quality of life by shrinking tumours.

It is one of four drugs to be denied, under draft guidelines, by the Government's drugs advisory body - the National Institute of Health and Clinical Excellence (Nice) - because it did not believe they offered value for money.

The guidance also applies to Avastin, Nexavar and Torisel.

Image:(KC) BEYNON, John & daughter Sian.jpg John Beynon & daughter Sian

Housewife Mrs Thomas, aged 35, of Fairfield, in Port Talbot, said she was stunned by the move.

Although the drugs are not a cure for advanced renal cell carcinoma, or cancer that has spread from the first tumour, they can extend life by five or six months. She said: "I am absolutely disgusted.

"Is someone's life not worth £30,000?

"How can they put a price on it?

"I can't understand what the problem is in giving the drug to people.

"My dad in himself is great.

"He has responded so well to Sutent it's unbelievable.

"He has been on Sutent for more than a year.

"At the time, doctors were only giving him six months to live but he has had 18 months altogether."

But she added: "Other people have a big fight on their hands now.

"We were shocked, as there are four drugs that do work but you can't have them - it doesn't make sense."

"I am absolutely amazed."

Every year, more than 7,000 people are diagnosed with kidney cancer. And out of that figure 1,700 patients will be diagnosed with advanced forms of the disease. Last year, Mr Beynon's family feared he was going to be denied the treatment despite being diagnosed with a rare form of cancer, which is called a gastrointestinal stromal tumour, or gist.

The 59-year-old was diagnosed with the first tumour eight years ago, and it was found to have spread to the liver during 2003.

Bosses at Neath Port Talbot Local Health Board (LHB) originally refused to pay for the drug, despite medics at Singleton Hospital warning his best chance of life was with Sutent.

The organisation took six months to turn down the request for funding.

But the decision led to a major campaign, culminating in the handing over of a 4,000-name petition.

It forced the LHB to do a U-turn on its decision last October, leading it to agree to pay for two months' worth of Sutent on a trial basis.

Mrs Thomas, whose dad lives on Angel Street, Port Talbot, said Sutent had totally changed his outlook on life.

"Sutent worked on three of his tumours but one has got resistant to it," she said. "The doctors are hoping to remove the remaining tumour but he may go back on Sutent.

"If they are not going to give the treatment, I don't know where we are going to go.

"Before, my dad did not do a lot at all. If you know there is nothing that they can do for you, then people give up.

"But after having the drug, his outlook changed completely and he was going out to the shops - it gave him hope."

The draft guidance for England and Wales, which is subject to appeal, has said those already on the drugs should continue their therapy.

Professor Peter Littlejohns, clinical and public health director at Nice, said NHS resources were "not limitless" and hard choices had to be made.

"Although these treatments are clinically effective, regrettably, the cost to the NHS is such that they are not a cost-effective use of NHS resources," he added.

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