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Man hails 'quality of life' drug daratumumab now available on NHS

Ross Cunliffe Ross Cunliffe by a bikeRoss Cunliffe
Ross Cunliffe was on the drug daratumumab for two years, from 2019 to 2021, but he could access it only through his private medical cover

A man has hailed the release of a cancer drug on the NHS, revealing it has given him an improved quality of life.

Ross Cunliffe, 65, from Woburn, Bedfordshire, was told in 2013 he had the rare condition, AL amyloidosis.

He secured daratumumab privately in 2019, and said making it available on the NHS was "the right thing" to do.

The National Institute for Health and Care Excellence (Nice) said it would benefit about 450 people a year.

Ross Cunliffe Ross Cunliffe with his son and grandchildren in a swimming poolRoss Cunliffe
Mr Cunliffe loves spending time with his two grandchildren

Mr Cunliffe had campaigned with blood cancer charity Myeloma UK for the drug to be made available for everyone.

The account director said being able to access daratumumab made him feel "guilty", but as soon as he took it made a "remarkable difference to my condition".

"I have tried to help raise the message about daratumumab simply by doing articles and talking to people and writing to my MP, because of the principle of the unfairness that I could get these drugs," he said.

"I'm a great believer in there's always a right thing and a wrong thing [to do]. Sometimes it's not easy to do the right thing but... in this instance, the right thing has been done."

Ross Cunliffe Ross Cunliffe cycling with friendsRoss Cunliffe
Mr Cunliffe has always been a keen athlete and loves to cycle

The keen athlete, who also has stage four lung cancer and the blood cancer myeloma, said that while he was on the drug for two years it "suppressed my condition" and he was "well for pretty much that whole time".

It allowed him to snowboard, cycle - and spend time with his children and grandchildren, he said.

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What is AL amyloidosis?

  • "Amyloidosis" is a general term used for a group of conditions where an abnormal protein, called amyloid, accumulates in the tissues
  • AL amyloidosis is a rare condition that is caused by abnormal plasma cells in the bone marrow
  • Between 500 and 600 patients are diagnosed in the UK each year
  • It can be treated - but it is a relapsing-remitting condition
  • 15% of myeloma patients also have AL amyloidosis

Source: Myeloma UK

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Ross Cunliffe Ross Cuncliffe with his granddaughterRoss Cunliffe
The grandfather-of-two said taking the drug gave him a better quality of life with his family

Nice said the drug cost £4,320 for a 1,800mg per 15ml vial and, along with bortezomib, cyclophosphamide and dexamethasone, was recommended as an option for treating newly diagnosed AL amyloidosis in adults.

Dr Sophie Castell, chief executive of Myeloma UK, said it was "tremendous news".

She added: "This new drug combination is a game-changer and we know it can have a significant impact on people's quality of life and remission times."

Mr Cunliffe said: "The nature of my condition is the drugs I'm on will eventually stop working. I'm incurable, but if it had not been for daratumumab I wouldn't have survived those years.

"I've been lucky enough to do a thousand things with my life.

"It's been full of adventure and the drug allowed me to feel well enough to start doing some of those things again."

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