Woburn grandad given 7 months to live welcomes approval of life-saving drug on the NHS

A grandfather-of-two from Woburn given just seven months to live is celebrating a hard-earned victory after the treatment that kept him alive was finally approved on the NHS.

Ross Cunliffe was 54 when he diagnosed with both the incurable disease AL amyloidosis and incurable blood cancer myeloma in late 2013.

Thankfully Ross was able to receive DaraCyBorD, the very first treatment for AL amyloidosis, through private healthcare. Ten years on, he is still defying the odds.

In a bid to give other patients access to this life-changing treatment, in 2022 Ross backed blood cancer charity Myeloma UK’s #UnlockDaraCyBorD campaign to make DaraCyBorD available on the NHS.

Now, after a hard-fought campaign and a lengthy appeal process, DaraCyBorD has finally been approved by the National Institute for Health and Care Excellence (NICE).

“I’m delighted with the news,” said the 65-year-old, who has since been diagnosed with stage four lung cancer. “It’s quite good therapy for me to know that at least I had a small part to play to bring this treatment to the people who need it.

“I am aware of how lucky I am to get these drugs privately. There was a strong likelihood I would not survive seven months. The seven months became completely redundant thanks to the treatment. But I could just have easily been in a completely different situation where it didn’t happen.”

AL amyloidosis is a rare, incurable condition which affects multiple parts of the body and can severely damage the kidney and heart.

Around a quarter of patients die within six months of being diagnosed.

The first treatment of its kind, DaraCyBorD has been shown to be effective in clinical trials with patients five times more likely to see their disease stopped in its tracks. Up to 600 people each year will now benefit from DaraCyBorD on the NHS.

Dr Sophie Castell, Chief Executive at blood cancer charity Myeloma UK, said: “This is tremendous news and means that, for the very first time, people who have AL amyloidosis will be able to gain access to this bespoke treatment. I want to extend my heartfelt thanks to everyone who has fought alongside us. Every person who has written to their MP, shared their story and helped us make the case to NICE about this significant unmet need and the huge impact it will have.

“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.

“Although we’re immensely proud of what we’ve achieved together, we are mindful that, over the last year, while we pushed for a U-turn on NICE’s decision, hundreds of newly-diagnosed patients missed out on this life-changing treatment – a treatment which has been available in Scotland since 2022. It's disappointing that it took so long to get to this point.

“Patients deserve to receive the best, most effective treatments, no matter where they live. We will continue to push for the system to work faster and deliver for those who need it most.”

Between 500 and 600 people are diagnosed with AL amyloidosis in the UK every year. And between 3,000 and 4,000 people have AL amyloidosis in the UK.

Ross, a keen cyclist and athlete, knew something was wrong when he started feeling unusually tired back in 2012. It took the best part of a year for him to finally get a diagnosis.

“It was a real blow,” said Ross, who worked for a software company. “I remember walking the dog to get my head around it and work out how to tell my wife and children.

“I knew something wasn’t right for a while. I was this obsessive athlete and over the space of a year my performance dropped. It was principally the fatigue. I started to push for a diagnosis all through 2012 to 2013.

“I’m convinced beyond any shadow of doubt that these drugs have made me live longer, enabled me to spend more time with my grandchildren and enjoy massive chunks of life. I thank my lucky stars every single day I was able to get this treatment and the ones I’ve had since.”

Click here for more information about AL amyloidosis o call 0800 980 3332.