A group of bowel cancer patients have paid tribute to George Alagiah amid a campaign for better treatment options in the UK for a mutation of the disease.

The online group, named Breaking BRAF after the B-RAF V600E mutation of bowel cancer, said they were “deeply saddened” to hear about Alagiah amid their campaign for access to more treatments and clinical trials for patients with the mutation.

It was announced on Monday that the BBC newsreader had died at the age of 67 after he was diagnosed with bowel cancer in 2014.

Dame Deborah James, who was diagnosed with the B-RAF mutation, died at the age of 40 in June last year.

A spokeswoman for the Breaking BRAF group, Helen Canning, 40, told the PA news agency: “The whole colorectal cancer (CRC) community was deeply saddened waking to the news of George Alagiah’s passing yesterday morning.

“He was an inspirational man who campaigned hard for more awareness of CRC and was able to help the campaign to lower the national screening age to 50 – this is still not young enough though.

“At Breaking BRAF we are all too aware that more and more people are being diagnosed in their 40s, 30s and 20s with late stage CRC due to not having the classic symptoms and being told ‘you’re too young’ by doctor after doctor.

“George’s passing is yet another reminder this isn’t an old, overweight, unhealthy person’s disease.

“Young people with it deserve access to treatments that will help them survive long after diagnosis.”

An estimated 8% to 10% of bowel cancer patients will be diagnosed with the B-RAF mutation, which causes the cancer to be more aggressive and more resistant to chemotherapy and standard treatment drugs.

The Breaking BRAF support group on Facebook consists of around 150 patients and carers, and their Instagram page provides information about the mutation.

Clare Mariconda, 41, an admin team member for Breaking BRAF who was diagnosed with stage four bowel cancer in 2020, told PA: “We are all just trying to do out bit.

“It probably won’t be soon enough to help any of us, but if we can do something that helps the future, that’s why we’re all in it really.”

Ms Mariconda said the group want the campaign to reach the UK Government and the National Institute for Health and Care Excellence (Nice) “in terms of policy-making”.

She said they are also aiming their message at researchers and oncologists to see them as “younger individuals with a strong drive to live who are willing to try new drugs and treatments”.

The mother-of-one from Cambridge said: “Having this mutation means that you become more resistant to the drugs more quickly and it’s more aggressive.

“So you try something, it might work for a while, but then all of a sudden one or two tumours stop responding, and you’ve got to pick something else to go and try.”

She said a lack of treatment options means “people can end up on some quite old chemo treatments” that some may have already tried.

“You can try this, but the chances of it being more effective are slim,” she said.

“So all of a sudden you just feel like you’re on a very slippery slope of kind of deterioration, really.

“It’s pretty scary, and people seem to deteriorate sort of quite quick.”

She said that one of the founders of the Breaking BRAF group, Clare Fowler, was “still contributing to our group up until a week before she passed away” in April.

Ms Mariconda said the group would like to set up their own charity, but added that at present “we are just trying to make as much noise and raise as much awareness as we can about the situation”.

Andrew Harrison, 38, who was one of the first people to establish the Breaking BRAF group in September 2022 alongside Ms Fowler, told PA: “This illness has taken everything from me, including my independence and my role as head of my family.

“Where once my family had a strong father figure watching over and protecting them, they now face an uncertain future which is hard for kids to deal with.”

Mr Harrison, a father-of-four from Rochdale, was diagnosed with bowel cancer in September 2020, but said he was only told he had the B-RAF mutation over a year later, in December 2021.

Since then, he has undergone a series of treatments, including significant operations, chemotherapy, targeted therapy, radiotherapy and supplementation, saying: “You name it, I’ve probably tried it.”

By February this year, Mr Harrison said his cancer had progressed to the point where he was “fully disabled” and reliant on his wife.

He said: “We need the group to carry on the message until a cure is found.”

Richard Wilson, professor of gastrointestinal oncology at the University of Glasgow, and a medical adviser for Bowel Cancer UK, said: “[The B-RAF mutation] makes the cells resistant… to our standard treatments, our chemotherapy drugs and our radiotherapies.

“More people who have the B-RAF mutation of bowel cancer, it’s not that their cancer presents differently, it’s more likely to have more difficult patterns of spread that have a worse overall outlook.”

Prof Wilson said: “Fifteen, 20 years ago when I started specialising in bowel cancer, bowel cancer in the under 50s was 5% of the total population. It is now, in that short period of time, 10%.

“The prediction is that by 2040, it will be 40% to 50% in the under 50s, so bowel cancer in the under 50s is really increasing.”

He said experimental clinical trials are taking place across the UK to “develop better treatments” and “better predictors for people so we can get better outcomes”.

“This is the kind of story that I’m hearing every day in my clinics,” he said.

“People who’ve looked after themselves, are getting on with life and then bang, they’ve got this tumour and your life changes.

“We’re getting better overall at treating this, we’re getting better at curing more people, we’re getting better at people who can’t be cured, having them live longer with better quality of life, but we’ve still got such a long way to go.”

Patients and carers with the B-RAF mutation can visit the Breaking BRAF Facebook group at facebook.com/groups/breakingbraf/ or the Instagram page at instagram.com/breakingbraf_uk/?igshid=OGQ5ZDc2ODk2ZA%3D%3D