Family Urges NHS to Approve New Cancer Drug After Tumours Shrink in Size
The family of a man who died from an aggressive form of cancer is urging health officials to approve a new treatment that offers hope for a "normal life" to patients. Huw Jones, from Llanuwchllyn in north Wales, passed away in February after battling cholangiocarcinoma, also known as bile duct cancer. His family believes that without the drug zanidatamab, they would not have been able to spend a precious year together as a family of three.
Campaign for Access to Zanidatamab
Mr Jones, aged 33, was diagnosed with stage 4 cholangiocarcinoma in 2024 after experiencing torso pain during triathlon training. His diagnosis came just one day before his pregnant partner’s 20-week scan for their first child. In January 2025, the same month his son Idris was born, he began taking zanidatamab as part of a clinical trial. He reported significant improvements, including shrinking tumours and reduced reliance on morphine for pain relief.
He had campaigned tirelessly for the drug 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the National Institute for Health and Care Excellence (Nice), initially rejected zanidatamab for widespread use in draft guidance. However, officials are scheduled to meet in March to assess further evidence, according to the cholangiocarcinoma charity AMMF.
Patient Testimonials Highlight Drug Efficacy
After Mr Jones' death, his partner Cadi Rowlands has continued his campaign. Fellow patient Gareth Honeybone, an NHS surgeon from Sheffield diagnosed at age 27, echoes these calls. Mr Honeybone underwent surgery and chemotherapy but faced a new tumour in August 2024. After starting zanidatamab in a clinical trial in January 2025, scans showed the tumour is no longer visible.
He stated, "I’m one of the lucky ones, living a normal life again, thanks to zanidatamab. I’m back at work full-time and was able to visit my brother in Australia over Christmas." He expressed concern that not approving this treatment could worsen inequalities in care, as only those in trials or with private healthcare might benefit.
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. The drug, also known as Ziihera, is an antibody treatment targeting the HER2 protein, which stimulates tumour growth. It works by activating the immune system to kill cancer cells and reducing HER2 levels to prevent further growth.
Paul Howard, head of policy and research at AMMF, said, "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." A Nice spokesperson acknowledged the provisional decision is disappointing but noted that important questions remain about the drug's extra benefits and quality-of-life improvements compared to usual treatments.
Broader Context of Bile Duct Cancer
This news follows an international expert call for urgent improvements in diagnosing and treating bile duct cancer. A consensus statement in Nature Reviews Gastroenterology and Hepatology highlighted that outcomes remain poor, with about 3,000 deaths annually in England. Only about a quarter of patients survive a year after diagnosis, making it one of the deadliest cancers.
The campaign by Huw Jones' family and supporters underscores the critical need for accessible, effective treatments to combat this devastating disease and offer hope to thousands affected.
