Family Condemns NHS Watchdog Over Rejected Cancer Drug After Father's Death
The family of a young father who tragically died from bile-duct cancer has launched a scathing criticism of health officials who rejected the use of a potentially life-saving treatment on the NHS. Huw Jones, a 33-year-old from North Wales, passed away in February following a short battle with stage four cholangiocarcinoma. His cancer was initially detected after he began experiencing abdominal pain while training for a triathlon.
A Devastating Diagnosis Amid New Life
When Mr Jones received his diagnosis in 2024, his wife was 20 weeks pregnant with their first child. In a cruel twist of timing, January 2025—the very month his son, Idris, was born—saw Huw enrolled in a clinical trial for zanidatamab. This powerful drug is specifically designed for cases where cancer cannot be surgically removed and has metastasised to nearby tissue or other parts of the body.
Remarkable Initial Improvement
Mr Jones reported feeling his condition "improved a great deal" after commencing the treatment, which is administered via an infusion drip into a vein every two weeks. "Some of my tumours shrunk in size, and I was able to reduce the amount of morphine I was taking for pain relief," he stated at the time. He also experienced fewer side-effects compared to conventional chemotherapy drugs, allowing him precious time with his newborn son and the ability to resume exercising.
NICE's Controversial Rejection
However, earlier this year, the National Institute for Health and Care Excellence (NICE) issued provisional guidance rejecting the use of zanidatamab on the NHS. The watchdog cited insufficient evidence to suggest the drug offers good value for money. Huw's son was just one year old when his father succumbed to the disease. Shortly before his death, Mr Jones passionately appealed to the NHS spending watchdog to reconsider its recommendation, arguing the treatment could grant thousands of patients a chance at a "normal life."
The Grim Reality of Bile-Duct Cancer
Cholangiocarcinoma is estimated to affect approximately 3,000 individuals annually in the UK. The bile ducts are small tubes connecting organs like the liver and gallbladder, integral to the digestive system. The severity of this cancer depends on its location within the bile ducts and whether it has spread to other areas, such as the pancreas or bowel.
Key symptoms include:
- Changes in bowel habits
- Persistent itchy skin
- High temperature or fever
- Abdominal pain and unexplained weight loss
- Jaundice, characterised by yellowing of the skin and eyes
When detected at a late stage, only five per cent of patients survive beyond five years, underscoring the urgent need for effective treatments.
A Widow's Campaign and a Survivor's Testimony
Following her husband's death, Huw's wife, Cadi Rowlands, has taken up his campaign to secure NHS approval for zanidatamab. Her efforts have garnered support from another bile-duct cancer patient, Gareth Honeybone, 31, from Sheffield. Mr Honeybone was diagnosed with this rare, aggressive cancer at just 27 years old.
After undergoing tumour removal surgery and chemotherapy, he was initially given the all-clear. However, new scans in August 2024 revealed a recurrence. Following further chemotherapy and immunotherapy, he was offered zanidatamab as part of a clinical trial. Today, Mr Honeybone is tumour-free.
"I am one of the lucky ones, living a normal life again thanks to zanidatamab," he said. "I'm back at work full-time—unlike when I was having chemo and immunotherapy, when I couldn't work—and I was even able to visit my brother in Australia over Christmas."
Warnings Over Widening Inequalities
Mr Honeybone expressed deep concern that NICE's ruling could exacerbate existing inequalities in cancer care. "I am concerned that not approving this treatment for NHS patients will add to 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," he warned.
AMMF, the UK's sole bile-duct cancer charity, echoed these concerns, labelling NICE's recommendation as "very disappointing." In clinical trials, the treatment—also known as Ziihera—was found to almost triple the life expectancy of patients receiving second-line treatment, used when cancer stops responding to initial chemotherapy.
How Zanidatamab Works
This antibody treatment targets patients whose cancer exhibits high levels of the HER2 protein, which stimulates tumour growth, and has progressed after prior treatment. It operates by activating the immune system to target and destroy cancer cells, similar to immunotherapy, while simultaneously reducing HER2 protein levels to inhibit further cancer growth.
Paul Howard, head of policy and research at AMMF, stated: "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
In response, 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. However, NICE maintains its committee reviewed all available evidence thoroughly, and there are still 'some important questions that need answering' including how much extra benefit patients would get from the drug compared to standard treatments."
This controversy emerges amid calls from experts for urgent improvements in the diagnosis and treatment of bile-duct cancer, as patient outcomes remain poor. Researchers suggested last year that annual blood tests for cancer could prevent half of cases from reaching an incurable stage, with a national rollout of universal cancer screening potentially less than a decade away.
A study published in BMJ Open found that for patients with rapid tumour growth, annual blood tests could reduce deaths within five years by 21 per cent and late diagnoses by 49 per cent, compared to standard care. This highlights the critical need for both early detection and accessible, effective treatments like zanidatamab to combat this devastating disease.
