AMMF will be at Scottish Parliament to advocate for better care in cholangiocarcinoma
On Wednesday 11th June 2025, AMMF will host a reception in the Holyrood Room at Scottish Parliament.
As with our reception at Westminster during Cholangiocarcinoma Awareness Month 2025, this event will build on the momentum of last year’s successful launch of the white paper, “Rethink Liver Cancer”. We will focus on addressing the critical healthcare inequalities facing those with cholangiocarcinoma and working to ensure improved, more equitable access to care.
Sponsored by Ben Macpherson, MSP for Edinburgh Northern and Leith, AMMF’s 2025 event will bring together members of the Scottish Parliament, people diagnosed with cholangiocarcinoma, health service leaders, and experts across the field of cholangiocarcinoma. Our objective is to highlight the urgent need for a “Fairer Deal, Faster” in cholangiocarcinoma care, by addressing disparities in early diagnosis, access to treatment, and survival rates.
Of particular concern in Scotland is the discrepancy between new immunotherapies, such as ivosidenib (Tibsovo®), being approved for use in the NHS in Scotland but without funding for the molecular profile tests patients need first, to determine if their genetic profile shows they can benefit from these targeted treatments. In England, molecular tests for 12 abnormalities are available free of charge for NHS patients with cholangiocarcinoma; whilst in Scotland, testing for only one abnormality is currently funded by NHS Scotland.
Ben Macpherson MSP raised the issue of lack of funding for molecular testing in a parliamentary debate on 8th October 2024, asking the Cabinet Secretary for Health and Social Care to help ensure cohesion between Scottish Medicines Consortium (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. You can watch Ben Macpherson MSP raising this issue in Parliament 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 was 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.”
However, we are still awaiting access to molecular testing for patients with cholangiocarcinoma in Scotland to be announced.
More recently, on 20th February 2025, in highlighting World Cholangiocarcinoma Day, Ben Macpherson MSP raised this issue with the First Minister, John Swinney MSP at First Ministers Questions. You can read a transcript of this meeting of the Scottish Parliament on 20/02/2025 here.
We need your help to invite Members of Scottish Parliament (MSPs)
We are calling upon our supporters in Scotland to reach out to their MSPs and invite them to attend our reception at Scottish Parliament.
Download the invitation letter
We have prepared a sample letter for you to send to your MSPs. Please remember to add his or her name to the top of the letter and to fill in your name and address at the bottom and sign it.
Find your MSPs
Each Scottish resident is represented by eight MSPs; One constituency MSP who represents the local area and seven regional MSPs who represent the larger area. Using the link below, you can enter your postcode to find the names and contact information for each of your MSPs:
https://www.parliament.scot/msps/current-and-previous-msps
Need help with your invitations?
If you need help with your invitations, please contact us at [email protected]
