Cancer Patients and Families Campaign for NHS Approval of Zanidatamab for Bile Duct Cancer
Key Insights
Cancer patients and families are campaigning for NHS approval of zanidatamab, a targeted treatment for bile duct cancer (search) that has shown promising results in clinical trials.
Clinical trial data demonstrate that patients treated with zanidatamab survived an average of 18.1 months compared with 6.2 months for those receiving current second-line treatment.
NICE initially rejected the drug for widespread NHS use but will reassess the evidence in March 2025, citing questions about the drug's comparative benefits and quality of life improvements.
Cancer patients and their families are mounting a campaign for NHS approval of zanidatamab, a targeted treatment for bile duct cancer (search) that has demonstrated significant survival benefits in clinical trials. The National Institute for Health and Care Excellence (NICE) initially rejected the drug for widespread NHS use but will reassess the evidence in March 2025.
Patient Experiences Drive Campaign
Surgeon Gareth Honeybone from Sheffield exemplifies the treatment's potential impact. Diagnosed with bile duct cancer (search) at age 27, the 31-year-old experienced tumor disappearance on scans after receiving zanidatamab through a clinical trial. "The tumour disappeared from scans, which if I was on the standard treatment wouldn't have happened. If it wasn't for this drug I wouldn't be at the moment cancer free," Honeybone said.
The campaign gained additional momentum following the death of Huw Jones, a 33-year-old new father from north Wales who died in February after advocating for the drug's approval. Jones, diagnosed with stage 4 cholangiocarcinoma (search) in 2024, started zanidatamab treatment in January 2025 through a clinical trial. His family believes the treatment enabled them to spend a crucial year together as a family of three with their newborn son, Idris.
"My condition improved a great deal after I started zanidatamab," 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, I don't feel as tired and I'm able to continue doing exercise."
Clinical Evidence and Treatment Mechanism
Clinical trial data show that patients treated with zanidatamab survived an average of 18.1 months compared with 6.2 months for those receiving current second-line treatment. The treatment, also known as Ziihera, is an antibody treatment designed for patients with higher-than-normal levels of HER2 (search) protein, which stimulates tumor growth.
The drug works by activating the immune system to remove and kill cancer cells while reducing HER2 (search) levels to prevent cancer growth. It is recommended for use when cancer cannot be surgically removed, has spread, and has previously been treated with at least one other cancer medicine.
Healthcare Access Concerns
Patient advocates express concern about healthcare inequalities created by the current approval status. "I'm concerned that not approving this treatment for NHS patients will add to the inequalities in cholangiocarcinoma (search) 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," Honeybone stated.
Paul Howard, head of policy and research at AMMF (search) (the cholangiocarcinoma (search) charity), emphasized the limited treatment options currently available. "The current treatment options for people with tumours that have HER2 (search) 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 Review Process
NICE officials acknowledge the treatment's potential benefits while explaining their initial rejection. "This suggests zanidatamab is likely to help people live longer and delay their cancer getting worse. However, the committee was unable to make a positive recommendation based on the evidence submitted by the company at the first meeting," a NICE spokesperson said.
The organization cited "important questions that still need answering" about the drug's comparative benefits and quality of life improvements. "There are some important questions that still need answering, particularly around how much extra benefit people would get from taking zanidatamab (and) how much it might improve people's quality of life compared to the usual treatments."
Disease Context
Bile duct cancer (search) represents one of the most challenging malignancies, with approximately 3,000 deaths annually in England. Only about a quarter of patients survive for a year after diagnosis, highlighting the urgent need for effective treatments. The disease's poor prognosis underscores the significance of zanidatamab's demonstrated survival benefits in clinical trials.