His diagnosis came the day before his pregnant partner’s 20-week scan for their first baby
The family of a man who died from an aggressive form of cancer has pleaded with health officials to give the green light to a new treatment, which offers hope of a “normal life”. New father Huw Jones, from Llanuwchllyn in north Wales, died in February.
He had been campaigning for zanidatamab to be made available for all patients with cholangiocarcinoma – also known as bile duct cancer. The NHS’s spending watchdog initially rejected the new targeted treatment for widespread NHS use, in initial draft guidance.
Officials from Nice are due to meet in March to assess the evidence on the treatment, according to the cholangiocarcinoma charity AMMF. Mr Jones, 33, was diagnosed with stage 4 cholangiocarcinoma in 2024 after experiencing a pain in his torso after training for a triathlon.
His diagnosis came the day before his pregnant partner’s 20-week scan for their first baby. He started taking zanidatamab as part of a clinical trial in January 2025 – the month his son, Idris, was born.
His family believe that without zanidatamab, they would not have been able to spend a year together as a family of three. Mr Jones had said: “My condition improved a great deal after I started zanidatamab. “Some of my tumours shrunk in size, and I was able to reduce the amount of morphine I was taking for pain relief.
“There are a lot fewer side effects compared to chemotherapy alternatives, I don’t feel as tired and I’m able to continue doing exercise.”
He said that the decision to reject the treatment did not make sense to him, as he called on the National Institute for Health and Care Excellent (Nice) to revise its recommendation. After Mr Jones’ death, his partner Cadi Rowlands backed his campaign to get the drug approved for NHS use.
And his calls were echoed by fellow cholangiocarcinoma patient Gareth Honeybone, from Sheffield. Mr Honeybone, an NHS surgeon, was diagnosed when he was just 27. His tumour was removed through surgery and he had a course of chemotherapy and was given the all-clear, but a new tumour was detected in August 2024.
After undergoing chemotherapy and immunotherapy, he started taking zanidatamab in January 2025, through a clinical trial. Scans have shown that the tumour is no longer visible. Mr Honeybone, now 31, said: “I’m one of the lucky ones, living a normal life again, thanks to zanidatamab.
“I’m back at work full-time – unlike when I was having chemo and immunotherapy, when I couldn’t work – and I was able to visit my brother in Australia over Christmas. I’m concerned that not approving this treatment for NHS patients will add to the inequalities in cholangiocarcinoma care we are already seeing – with people who are able to access clinical trials or have private healthcare benefiting from new life-extending treatments; and those that can’t go on a trial or afford to pay for insurance, not surviving.”
AMMF said that clinical trial data show that patients treated with zanidatamab survived an average of 18.1 months compared with 6.2 months for those receiving current second line treatment. The treatment, also known as Ziihera, is an antibody treatment for patients with a higher-than-normal level of a protein called HER2, which stimulates tumours to grow.
It works by activating the immune system to remove and kill the cancer cells and reduces the levels of HER2 which prevents the cancer from growing. It is recommended for use when the cancer cannot be removed by surgery, has spread and has previously been treated with at least one other cancer medicine.
Paul Howard, head of policy and research at AMMF, said: “Whilst we recognise that Nice’s recommendation to reject the use of zanidatamab in the NHS is not final, it is still very disappointing. Receiving a diagnosis of cholangiocarcinoma is devastating.
“The current treatment options for people with tumours that have HER2 gene faults are very limited and often come with significant side effects. Zanidatamab has been shown to work well for these patients, offering the possibility not only of longer life, but also to maintain or improve quality of life.
“We are hopeful that Nice and the pharmaceutical company will be able to find a solution that will enable NHS patients to access this innovative treatment.”
A Nice spokesperson said: “We know this provisional decision will be disappointing for people with advanced biliary tract cancer and their families. We understand how important it is to have more treatment options that could help people live longer and maintain their quality of life.
“Our independent committee carefully reviewed all the available evidence. This suggests zanidatamab is likely to help people live longer and delay their cancer getting worse. However, the committee was unable to make a positive recommendation based on the evidence submitted by the company at the first meeting.
“There are some important questions that still need answering, particularly around how much extra benefit people would get from taking zanidatamab (and) how much it might improve people’s quality of life compared to the usual treatments.”
The news comes after an international team of experts called for an urgent improvement in the way patients with bile duct cancer are diagnosed and treated. A consensus statement published in the journal Nature Reviews Gastroenterology and Hepatology said outcomes for people with the cancer remain poor.
About 3,000 people die from bile duct cancer in England each year, making it one of the deadliest cancers. Only about a quarter of people survive for a year after diagnosis.
