Bereaved Family Urges NHS to Approve New Cancer Treatment After Father's Death
The family of a man who passed away from an aggressive form of cancer has made a heartfelt plea to health officials, urging them to approve a new treatment that promises a "normal life" for patients. Huw Jones, a 33-year-old new father from Llanuwchllyn in north Wales, died in February after a battle with cholangiocarcinoma, also known as bile duct cancer.
Campaign for Zanidatamab Approval
Mr. Jones had been actively campaigning for zanidatamab to be made available to all patients with cholangiocarcinoma. The NHS's spending watchdog, the National Institute for Health and Care Excellence (Nice), initially rejected this targeted treatment for widespread NHS use in draft guidance. Officials from Nice are scheduled to meet in March to reassess the evidence, according to the cholangiocarcinoma charity AMMF.
Diagnosed with stage 4 cholangiocarcinoma in 2024 after experiencing torso pain during triathlon training, Mr. Jones received his diagnosis just one day before his pregnant partner's 20-week scan for their first child. He began taking zanidatamab as part of a clinical trial in January 2025, the same month his son, Idris, was born.
His family believes that without this treatment, they would not have enjoyed a full year together as a family of three. Mr. Jones had previously stated, "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."
Support from Fellow Patient
Following Mr. Jones's death, his partner, Cadi Rowlands, has continued to support his campaign for NHS approval of the drug. Their efforts are echoed by Gareth Honeybone, a fellow cholangiocarcinoma patient from Sheffield. Mr. Honeybone, an NHS surgeon diagnosed at age 27, underwent surgery, chemotherapy, and was initially given the all-clear before a new tumour was detected in August 2024.
After chemotherapy and immunotherapy, he started zanidatamab in January 2025 through a clinical trial, and scans now show the tumour is no longer visible. Now 31, Mr. Honeybone 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."
He expressed concern that not approving this treatment for NHS patients could exacerbate existing inequalities in cholangiocarcinoma care, where only those in clinical trials or with private healthcare benefit from life-extending treatments.
Clinical Data and Expert Opinions
AMMF reports that clinical trial data indicate patients treated with zanidatamab survived an average of 18.1 months, compared to 6.2 months for those on current second-line treatments. Also known as Ziihera, this antibody treatment targets patients with elevated levels of the HER2 protein, which stimulates tumour growth. It activates the immune system to kill cancer cells and reduces HER2 levels to prevent further growth, recommended for inoperable, spread cancers previously treated with other medicines.
Paul Howard, head of policy and research at AMMF, commented, "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."
Nice's Response and Broader Context
A Nice spokesperson acknowledged the disappointment, stating, "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."
This development follows a recent call from an international team of experts for urgent improvements in diagnosing and treating bile duct cancer. A consensus statement in Nature Reviews Gastroenterology and Hepatology highlighted poor outcomes, with about 3,000 deaths annually in England and only a quarter of patients surviving a year post-diagnosis, making it one of the deadliest cancers.
