The family of a man who passed away from an aggressive type of cancer is urging health authorities to approve a new treatment that could offer the promise of a “normal life.” Huw Jones, a new father from Llanuwchllyn in north Wales, died in February.
Jones had been advocating for zanidatamab to be accessible to all cholangiocarcinoma patients, also known as bile duct cancer. Initially, the NHS’s spending watchdog declined the new targeted therapy for broad NHS usage in preliminary draft guidance.
According to the cholangiocarcinoma charity AMMF, officials from Nice are set to convene in March to evaluate the evidence on the treatment. Mr. Jones, aged 33, was diagnosed with stage 4 cholangiocarcinoma in 2024 after experiencing torso pain while training for a triathlon.
His diagnosis came just before his partner’s 20-week pregnancy scan for their first child. He began receiving zanidatamab as part of a clinical trial in January 2025 – the same month his son, Idris, was born.
His family credits zanidatamab for allowing them to spend a year together as a family of three. Jones noted significant improvements in his condition after starting zanidatamab, expressing a reduction in tumor size and decreased reliance on pain relief medication.
Following Mr. Jones’ demise, his partner Cadi Rowlands supported his efforts to secure approval for the drug’s NHS use. This sentiment was echoed by fellow cholangiocarcinoma patient Gareth Honeybone from Sheffield, who was diagnosed at 27 and benefitted from zanidatamab in a clinical trial.
Data from clinical trials indicate that patients treated with zanidatamab survived an average of 18.1 months compared to 6.2 months for those on current second-line treatment. The treatment, also known as Ziihera, is an antibody therapy for patients with elevated levels of the HER2 protein, which promotes tumor growth.
Paul Howard from AMMF expressed disappointment over Nice’s rejection of zanidatamab for NHS use, emphasizing the potential benefits it offers to patients with limited treatment options. Nice indicated that although zanidatamab shows promise in extending life and delaying cancer progression, further evidence is required to support a positive recommendation.
An international team of experts recently called for improved diagnosis and treatment of bile duct cancer patients, as outcomes for this cancer type remain bleak. Bile duct cancer claims about 3,000 lives in England annually, with only a quarter of patients surviving beyond a year post-diagnosis.