Huw Jones’ Diagnosis and Treatment Journey
When Huw Jones was diagnosed with a rare and aggressive form of cancer, he was about to become a father. He had cholangiocarcinoma, a bile duct cancer, which had progressed to Stage 4, rendering it incurable. The best available option was treatment aimed at extending his life.
The trial drug Zanidatamab, prescribed when surgery is no longer viable, provided Huw with valuable additional time. It enabled him to witness his son Idris’s first birthday.
Before his passing in February at the age of 33, Huw campaigned for Zanidatamab to be made accessible through the NHS. The National Institute for Health and Clinical Excellence (NICE) has now recommended its use in Wales and England, a development that Huw’s family believes will offer hope to many others.
Clinical trials indicate that Zanidatamab can nearly triple life expectancy for patients with this cancer, increasing survival from approximately six months to 18 months.
"Now other families can get that help too," said Huw's dad Gareth.
"It is very important for the patients suffering from this cancer that this is available.
"The drug brought a glimmer of hope to Huw."
In September 2024, Huw, who lived in Llanuwchllyn, Gwynedd, first noticed something was wrong while swimming in Llyn Tegid. He experienced abdominal pain and subsequently consulted a doctor. Tests confirmed the diagnosis of cholangiocarcinoma, which had already spread to his lungs.
Gareth explained,
"Huw was extremely lucky to be able to get Zanidatamab through doctors in London.
"When Huw was diagnosed the drug wasn't available on the health service, we had to find it ourselves.
"The drug made a massive difference to him, his tumours shrunk and his symptoms improved almost immediately."
The treatment afforded Huw precious time with his wife Cadi and their son Idris during his early months. Although aware that the drug would not cure him, it gave Huw a positive outlook and allowed him to envision a short-term future with hope, according to his father.
"Hope is the best way of describing it," Gareth added.
"Huw had so much hope and he was looking forward to getting better and that's what kept him going for so long."
Huw passed away in February, 17 months after his diagnosis.
Understanding Cholangiocarcinoma
Cholangiocarcinoma is a cancer of the bile ducts. While there are no UK-wide statistics on incidence, approximately 2,800 people are diagnosed with this cancer annually in England.
The bile ducts are small tubes connecting various organs, including the liver and gall bladder, and are part of the digestive system. The severity of bile duct cancer depends on its location within the ducts, size, spread, and the patient’s overall health.
Symptoms can be difficult to detect but may include abdominal pain, jaundice, and weight loss.
Approval and Availability of Zanidatamab
In Wales, the Welsh government awaits NICE approval before making new drugs available. NICE evaluates factors such as efficacy, safety, and cost-effectiveness, which measures how well a treatment works relative to its cost to the NHS.
NICE’s guidance applies to both Wales and England. Typically, health boards in Wales are expected to make a drug available for prescribing within 60 days following draft guidance recommending its use.
Zanidatamab was approved for use earlier this month and is expected to be accessible by June.
Also known as Ziihera, Zanidatamab is an antibody treatment for patients exhibiting elevated levels of the HER2 protein, which promotes tumour growth. The drug works by activating the immune system to eliminate cancer cells and reducing HER2 levels, thereby inhibiting cancer progression.
Clinical trials suggest Zanidatamab can nearly triple life expectancy compared to current treatments. NICE estimates that around 65 patients annually will benefit from this treatment, which is administered via intravenous drip every two weeks.
Helen Knight, Director of Medicines Evaluation at NICE, stated:
"Patients and clinical experts involved in the appraisal told us how this treatment would make a huge difference by extending people's lives and improving their quality of life – something that was not always possible with chemotherapy."
