The family of a 33-year-old father who died from an aggressive bile duct cancer has urged health officials to approve a treatment they say offered hope of a normal life. Huw Jones, from Llanuwchllyn in north Wales, passed away in February after being diagnosed with stage 4 cholangiocarcinoma in 2024.
Mr Jones had been campaigning for zanidatamab to be made available on the NHS. The National Institute for Health and Care Excellence (Nice) initially rejected the drug in draft guidance, but is due to reassess the evidence in March. His partner, Cadi Rowlands, has continued his campaign, saying the drug gave them a year together as a family of three after their son Idris was born.
Another patient, Gareth Honeybone, an NHS surgeon from Sheffield, also benefited from zanidatamab. Diagnosed at 27, his tumour became visible again in August 2024, but after starting the drug in January 2025, scans show no tumour. He said: “I’m one of the lucky ones, living a normal life again.”
Clinical trial data cited by the cholangiocarcinoma charity AMMF show patients on zanidatamab survived an average of 18.1 months, compared with 6.2 months on current second-line treatment. The drug, also known as Ziihera, targets HER2-positive tumours and activates the immune system to kill cancer cells.
Paul Howard from AMMF said Nice’s initial rejection was disappointing but expressed hope that a solution could be found to allow NHS patients access to the innovative treatment.
