Leeds man whose cancer has returned for third time fears lifeline has been ‘taken away’ by NICE decision

A Leeds cancer patient claims a health watchdog is effectively turning off life support for people in England with pancreatic cancer by not backing a lifeline drug.
Carl Denning, 41, from Hunslet. Picture by Tony Johnson.Carl Denning, 41, from Hunslet. Picture by Tony Johnson.
Carl Denning, 41, from Hunslet. Picture by Tony Johnson.

Carl Denning, from Hunslet, feels his attempt to fight the brutal illness has been undermined by the National Institute of Health and Care Excellence’s (NICE) decision not to recommend NHS funding for Abraxane.

Having first been diagnosed with stage three pancreatic cancer in 2012, the 41-year-old was told his cancer had relapsed for the third time on Tuesday and is gearing up for another battle with the disease which has now affected his liver.

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Manufacturer Celgene had hoped Abraxane would be recommended for use alongside existing drug gemcitabine – a combination available in Scotland and Wales.

But NICE has deemed that, despite it being more effective than some other treatments and potentially extending life expectancy by around two months, Abraxane is not cost effective and has serious side effects.

Carl, who runs a street food business, relied on an aggressive chemotherapy drug called FOLFIRINOX to fight the cancer when it returned in November 2013 and December last year but fears his body will soon become immune to it.

“It’s almost like they’re turning the machine off on people, it’s a lifeline for people to survive and they’re now taking that off them,” he said. “It’s really, really frustrating because I understand the NHS has a limited amount of budget but for something as serious as this you kind of feel like there’s nowhere to turn and you need some form of hope but that’s almost been taken away from you.”

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Carl worked full time and went to the gym most days when he started having symptoms including yellow, jaundiced skin, feelings of tiredness and chest pain in 2012.

Fortunately he was among the minority of patients whose cancer was operable, and had a 10-hour procedure to remove his tumours. Three years on he is still fighting but fears a lack of treatment options could limit his future.

“I’m 110 per cent ready to fight it again and totally appreciate the need to be able to save money but while the Government are taking the drugs from the list it’s giving me less chance, less hope and less ability to be able to fight it,” he said. “It’s hard enough without the drugs, and impossible without them.”

Around 8,800 people are diagnosed with pancreatic cancer every year in the UK. The disease has few symptoms in its early stages, meaning just 20 per cent of those with the disease live for a year or more after diagnosis.

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Sir Andrew Dillon, NICE’s chief executive, explained that the organisation believes Abraxane “cannot be considered an effective use of NHS resources”.

Wim Souverjins, general manager at Celgene in the UK, said the firm was “disappointed” by NICE’s decision but is “committed to searching for solutions for patients who are demanding this medicine”.

He added: “Cancers with devastatingly high levels of unmet need, require a different threshold of consideration and until we have that, we will be denying terminal cancer patients access.”

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