Family's Heartbreaking Plea for Cancer Drug Approval After Father's Death at 33
The family of a young father who tragically died from an aggressive form of cancer is making an impassioned plea to health officials, urging them to approve a new treatment that offers hope of a "normal life" for patients. Huw Jones, a 33-year-old from Llanuwchllyn in north Wales, passed away in February after a battle with cholangiocarcinoma, also known as bile duct cancer.
Diagnosis and Campaign for Treatment
Mr Jones was diagnosed with stage 4 cholangiocarcinoma in 2024, experiencing torso pain after training for a triathlon. Devastatingly, his diagnosis came the day before his pregnant partner's 20-week scan for their first baby. He began campaigning for zanidatamab to be made available for all patients with this rare cancer.
The NHS's spending watchdog, the National Institute for Health and Care Excellence (Nice), initially rejected the targeted treatment for widespread NHS use in draft guidance. Officials are due to meet in March to reassess the evidence, according to the cholangiocarcinoma charity AMMF.
Life-Extending Treatment and Family Time
In January 2025, Mr Jones started taking zanidatamab as part of a clinical trial—the same month his son, Idris, was born. His family believes that without this drug, they would not have enjoyed a year together as a family of three.
"My condition improved a great deal after I started zanidatamab," Mr Jones had said. "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."
He expressed confusion over Nice's rejection, calling for a revision of the recommendation. After his death, his partner, Cadi Rowlands, has continued his campaign for NHS approval.
Support from Fellow Patient
Mr Jones's calls are echoed by Gareth Honeybone, a 31-year-old NHS surgeon from Sheffield diagnosed with cholangiocarcinoma at 27. After surgery, chemotherapy, and immunotherapy, a new tumour was detected in August 2024. He started zanidatamab in January 2025 through a clinical trial, and scans now show the tumour is no longer visible.
"I'm one of the lucky ones, living a normal life again, thanks to zanidatamab," Mr Honeybone said. "I'm back at work full-time and was able to visit my brother in Australia over Christmas."
He warned that not approving this treatment could exacerbate inequalities in care, with only those in trials or with private healthcare benefiting from life-extending options.
Clinical Data and Charity Advocacy
AMMF reports that clinical trial data show 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 HER2 protein levels that stimulate tumour growth, activating the immune system to kill cancer cells.
Paul Howard, head of policy and research at AMMF, expressed disappointment over Nice's provisional rejection but remained hopeful for a solution. "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," he said.
Nice's Response and Broader Context
A Nice spokesperson acknowledged the disappointment, stating that while evidence suggests zanidatamab helps people live longer and delay cancer progression, important questions remain about its extra benefits and quality-of-life improvements compared to usual treatments.
This news follows an international expert call for urgent improvements in diagnosing and treating bile duct cancer. With about 3,000 deaths annually in England and only a quarter of patients surviving a year after diagnosis, outcomes remain poor, highlighting the critical need for new treatments like zanidatamab.
