Rethink Liver Cancer in Scotland
AMMF has been promoting our ‘Rethink Liver Cancer’ campaign in Scotland during this year’s Liver Cancer Awareness Month – at a national conference for professionals working in the NHS, in the Scottish media and in a debate in Parliament.
At the start of October, our Chief Executive, Helen Morement,opened a conference offering a Scottish perspective on the treatment of cholangiocarcinoma, organised by oncology and pathology leads at the Universities of Edinburgh and Glasgow.
Helen called for more public and professional awareness of cholangiocarcinoma as a primary liver cancer, in order to improve very low levels of early-stage diagnosis and to ensure that cholangiocarcinoma patients in Scotland have access to all available treatments.
Actor and director, Sally Reid, star of BBC Scotland comedy series ‘Scot Squad’ lent AMMF her support by sharing her family’s story in the press. Sally’s mum, Florence, sadly died last year after being diagnosed with cholangiocarcinoma. At the time of her diagnosis, Sally didn’t know anything about cholangiocarcinoma.
Sally explained: “I had no idea what else could be done after surgery and chemo, if there were clinical trials mum could enrol on, or other treatments she could try. After she died, and I was approached by AMMF, I found out that there are a growing number of drug therapies now being approved for the treatment of cholangiocarcinoma, but there’s a real need to improve awareness of this cancer and ways it can be treated.”
The start of this year’s Liver Cancer Awareness Month followed recent approval by the Scottish Medicines Consortium (SMC) for use in the NHS in Scotland of the new drug ivosidenib (Tibsovo®) for the treatment for cholangiocarcinoma – but without funding for the molecular profile test patients need first, to determine if their genetic profile shows they can benefit from this targeted treatment.
This discrepancy between when funding for new drug treatments is approved, but not the molecular tests needed to access them, is a serious issue in Scotland, as Professor Chiara Braconi, a Consultant Medical Oncologist at the Beatson West of Scotland Cancer Centre in Glasgow, helped to explain in AMMF coverage in ‘The Times’ newspaper in October:
“The majority of patients with cholangiocarcinoma in Scotland are missing out on treatment at the moment because molecular testing isn’t widely available as part of the standard of care. The only thing that can be done is testing through research – enrolling on a clinical trial – or paying privately for testing.”
The ‘Times’ report highlighted how in England, molecular tests for 12 abnormalities are available free of charge for NHS patients with cholangiocarcinoma; while in Scotland, testing for only one abnormality is available. AMMF supporter, Benjamin Carey, explained the impact of this inequality of access to tests in ‘The Times’.
Benjamin discovered that he had cholangiocarcinoma last year after being misdiagnosed with and treated for pancreatic cancer. The 55-year-old from Edinburgh was advised by an NHS consultant in London to have his tumour tested but the recommended molecular tests are not funded for NHS patients in Scotland.
Thankfully, Benjamin has now been told he is cancer-free, but the fact that he didn’t get the molecular profile of his tumour tested continues to worry him.
Benjamin said: “Knowing the molecular profile of my cancer would help my oncologist identify treatments quickly if I have a recurrence, without me losing valuable time waiting for test results. I’m lucky in that I’ve been told I’m in remission after surgery and potentially even cured, but I know other patients who are spending their savings on tests to access treatment because they’re not being funded by the NHS in Scotland.”
Benjamin’s Member of Scottish Parliament, Ben MacPherson, raised the issue of lack of funding for molecular testing in a parliamentary debate on 8 October, asking the Cabinet Secretary for Health & Social Care to help ensure cohesion between SMC approvals of new drug treatments and the necessary testing that will ensure NHS Scotland patients with cholangiocarcinoma can benefit from recent advances in medical science.
Watch Ben MacPherson raising this issue in Parliament on behalf of Scottish cholangiocarcinoma patients here:
Since the debate, oncology experts and scientists working in the NHS in Scotland have continued to raise the need for funded molecular testing for cholangiocarcinoma patients with Scottish policy makers, and the following response has been received from The Minister of Public Health, Jenni Minto:
“Expanded genomic testing for bile duct cancer has been assessed by the Scottish Strategic Network for Genomic Medicine test advisory group. We are now working with partners to ensure that this test can be implemented in Scotland as soon as possible and enable access to SMC-approved therapy where clinically indicated.”
AMMF is looking forward to updating ‘Rethink Liver Cancer’ supporters when funding for molecular testing for patients with cholangiocarcinoma in Scotland is announced.
To see full details on the Rethink Liver Cancer campaign, go to: https://ammf.org.uk/rethink-liver-cancer/
