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Cancer patient allowed key drugs at last

PUBLISHED: 14:12 15 October 2008 | UPDATED: 14:43 14 July 2010

A man who suffers from an incurable bone marrow cancer and was previously refused life-prolonging drugs has had the decision reversed in a landmark case.

A man who suffers from an incurable bone marrow cancer and was previously refused life-prolonging drugs has had the decision reversed in a landmark case.

Tony Burke, 58, was diagnosed with multiple myeloma six years ago and has led an impassioned campaign for people with the disease to be able to get the drug Velcade to treat the disease.

The drug is currently not available to all patients and guidelines from the watchdog National Institute of Clinical Excellence (NICE) state that when someone has had more than one relapse they are not given it.

Mr Burke, from Wymondham, suffered a second relapse in December and despite two appeals by his doctor was refused the drug by NHS Norfolk. However, he confronted health bosses face-to-face and the decision has now been overturned.

He said: “I think it really helped that I met them myself. I told them how important it was for me to be given the drug and they reconsidered.

“I can't tell you what a relief it is to have this opportunity. I don't know what will happen in the future but it means I have been given another chance.

“My family and I are very happy and I have currently had two cycles of treatment so we will have to see how it goes.”

The drug is known for slowing down the disease and prolonging the life of patients.

Until last year Velcade was not available on the NHS at all and then NICE approved it after the manufacturer suggested a scheme, the first of its kind in Britain, which means patients receive an initial dose over a few weeks.

If they show a partial or complete response, they continue treatment and the NHS pays as normal, at an average cost of £18,000 per patient. If patients show a minimal or no response, the company repays the cost of treatment to date.

Mr Burke and his daughter Siobhan, 24, are well known in Norfolk and nationally for their high-profile campaigning to improve the lives of people with the disease, which attacks the bone marrow.

They have raised money for Myeloma UK, a national charity that provides help and support for people with their disease and their families, through fundraising activities including a 30-mile beach walk along the Norfolk coast and marches in the city centre.

Mr Burke has also joined thousands of other patients for marches in London protesting at NICE's decision to only allow some patients the drug.

Mr Burke said: “Thanks to NHS Norfolk for making the right decision in the end. We now need to hope that NICE evaluates their decision-making and this refusal to give people drugs must stop. No patient with myeloma should be denied Velcade.”

Eric Low, Myeloma UK chief executive, said: “We are delighted that the combined efforts of the Burke family, Myeloma UK and the medical team overturned the initial decision to deny Tony access to Velcade.”

Dr Bryan Heap, medical director for NHS Norfolk, said: “The Norfolk Exceptional Cases Panel reviewed their decision relating to Mr Burke's case again in late August, when new information was submitted by the treating clinician. The panel concluded that the new information provided proved that Mr Burke was clinically exceptional and that the use of Velcade in this case was also cost effective.”

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