Meeting of the Parliament 30 October 2025 [Draft]
I declare an interest as a practising NHS general practitioner. I congratulate Marie McNair on securing this members’ business debate and raising vital awareness of cholangiocarcinoma, or bile duct cancer.
For GPs, cholangiocarcinoma is one of the most challenging diseases to detect. The symptoms are subtle and, often, non-specific: a bit of nausea, fatigue, loss of appetite or some discomfort under the rib—signs that could be almost anything. Sadly, by the time the symptoms add up to something more concerning, it is often too late for curative treatment.
The motion for the debate recognises liver cancer awareness month and draws attention to the shocking fact that cholangiocarcinoma has one of the poorest survival rates of any cancer. It most often affects people over 60, but, unfortunately, we are seeing it appear in younger patients, too. As a GP, I know full well that early diagnosis saves lives, but early diagnosis requires the right tools and systems, which is why the debate matters so much.
The old saying goes that prevention is better than cure, but, for cancers such as cholangiocarcinoma, where prevention is difficult, precision medicine gives us our best chance to improve outcomes. No two tumours are the same; each one carries its own genetic fingerprint, influencing how it grows and how it responds to treatment.
Through molecular profiling—basically, analysing the tumour’s DNA—doctors can identify specific mutations and target them with precision therapies. That is not science fiction; it is already changing lives.
For example, changes in genes called IDH1 and FGFR2 are found in one in seven people with this type of bile duct cancer. The good news is that there is now a drug labelled Pemazyre that is designed to target those specific changes. It is the first treatment made specifically for this cancer, and it is already approved for patients in England and Wales. For those who are eligible, it offers real hope and the chance of a longer and better-quality life than chemotherapy alone can provide.
However, in Scotland, access to such treatment depends on the implementation of a comprehensive genomic testing programme. The programme was approved by NHS Scotland in 2023, but it is yet to be fully funded and embedded into clinical practice.
Implementing that testing would allow more patients with cholangiocarcinoma to benefit from life-extending, targeted therapies. It would also strengthen our cancer intelligence, ensuring that we understand who might benefit most from emerging treatments that are very expensive.
The UK’s only charity dedicated solely to cholangiocarcinoma, AMMF, has led the way in supporting research, raising awareness and providing patient support. Its advocacy reminds us that, although cholangiocarcinoma is rare, its impact is profound and patients deserve access to modern, evidence-based care.
Scotland has a proud record in medical innovation. We were among the first to embrace precision oncology for other cancers. We must do the same here. By funding and implementing the genomic testing programme that is already approved, we can give clinicians the tools to act earlier, treat smarter and give patients and their families something invaluable: hope.
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