Campaigners vow to fight on for drug

7:01pm Wednesday 27th August 2008

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A campaign group from Oxfordshire fighting for a cancer-fighting pill to be prescribed on the NHS remain upbeat - despite being "snubbed" by the national drug-licensing body.

Today, kidney cancer sufferers and their families travelled to London to appeal to the National Institute for Health and Clinical Excellence for Sunitinib to be made freely available on the NHS.

Draft guidance issued by Nice earlier this month says that four kidney cancer drugs - including Sunitinib - are too expensive.

Led by Clive Stone, from Freeland, near Witney, more than half the 60-strong group of protesters had travelled from Oxford.

Mr Stone, spokesman for campaign group Justice for Kidney Cancer Patients, said the day had been a triumph - but he was angry that Nice chief executive Andrew Dillon had not taken the time to talk to them directly.

Mr Dillon accepted letters on behalf of the protesters, but refused to speak to them.

Mr Stone, who was diagnosed with kidney cancer last summer, said: "He wouldn't give us the time of day. I walked out in disgust - I was quite emotional."

Fellow patients Stephen Dallison, 34, from Oxford, and Bill Savage, 62, from Amersham, Buckinghamshire, were part of today's protest.

Until Nice issues its final guidance in January, local PCTs have the power to decide whether individual patients can be prescribed any of the four drugs.

Mr Dallison, who remains the only person to have been prescribed the life-extending drug Sunitinib by Oxfordshire NHS Primary Care Trust, after an appeal, said: "He wouldn't sit down to talk - he just wanted to get rid of us."

Mr Savage, who receives treatment at Oxford's Churchill Hospital, added: "We felt fobbed off."

Despite Mr Dillon's refusal to hold talks, the protesters felt they had sent a clear message to Nice and the Government.

Mr Stone said: "I'm proud - the protest was very successful and I feel we have struck a nerve. We won't give up."

Broadcaster and kidney cancer sufferer James Whale, who founded the James Whale Fund for Kidney Cancer, spoke to protesters in the lobby of Nice's headquarters.

He dubbed Nice "ignorant and arrogant" for refusing to recommend drugs already available in other countries and criticised Mr Dillon for hiding behind a decision he claimed could not be defended. He added: "We will not fade into the night."

Nice spokesman Frank Gordon said: "We will be looking at (the letters) as part of the consultation process."

Nice - which decides whether drugs should be prescribed by the NHS - is currently appraising the use of Bevacizumab, Sorafenib, Temsirolimus and Sunitinib for the treatment of renal cancers. The consultation into its draft guidance rejecting the drugs - published on August 7 - ends on Friday.