AMMF’s 2023 highlights

by Helen Morement, CEO

As the charity has grown in recognition and influence, it became necessary to evolve from our original status as an unincorporated charity to that of a Charitable Incorporated Organisation (CIO).  This involved complex work with the Charity Commission, throughout which the charity’s daily work and projects continued seamlessly and without interruption. AMMF’s status is now that of a Charity Commission approved and registered CIO.  To find out more about this, click here  

AMMF’s CEO Helen Morement

Photo courtesy of Marcos Bevilacqua Photography

As the charity expands its work throughout the UK and into Europe, I was honoured to be invited to speak about cholangiocarcinoma and the work of AMMF at a number of international conferences during the year, including the ENS-CCA1 meeting in Rome, ILCA2 conference in Amsterdam, the ESMO3 Advanced Course on CCA in Barcelona, plus an unforgettable opportunity to present at a reception held by the Spanish Ambassador to the Holy See in Rome.

Throughout the year there have been a number of highlights for us and, as we reach year end, I am delighted to share a few of the most notable ones with you: 

Professor John Bridgewater and Helen catch up at the Spanish Embassy

AMMF’s Hybrid European Cholangiocarcinoma Conference May 2023

AMMF was delighted to welcome two internationally renowned specialists at the forefront of the CCA world, Professor John Bridgewater (UK) and Professor Lorenza Rimassa (Italy), as co-chairs of the 2023 conference.  They expertly hosted a faculty of more than 40 international speakers and managed some challenging Q & A sessions, all exploring the conference theme – Innovation. The full programme and all conference presentations from the three days can been seen here.

AMMF’s Cholangiocarcinoma Data Project 

This project, of enormous importance to the charity’s work towards improved awareness not only of CCA itself, but the number of unmet needs, finally completed during 2023.  We have now been able to share its important findings, some of which confirmed what we already knew, and some we had previously not been aware of.

Key findings include:

  • CCA is no longer as rare as previously considered, it is a growing, untargeted problem.
  • More than half of those diagnosed with CCA received no cancer specific treatment at all.  
  • There have been no improvements in CCA survival rates in decades
  • People from the most deprived backgrounds were found to be almost 40% less likely to survive after a CCA diagnosis compared to the least deprived.

This data work has resulted in three papers:

Regional variation in routes to diagnosis of cholangiocarcinoma in England from 2006–2017  
(for the full paper in World Journal of Gastroenterology, click here)

Cholangiocarcinoma across England: a national study of temporal changes in incidence, survival and routes to diagnosis by region and socioeconomic deprivation 
(for the full paper in JHep Reports, click here)

Cohort study to assess geographical variation in cholangiocarcinoma treatment in England 
(for the full paper in World Journal of Gastrointestinal Oncology, click here)

Rethink Liver Cancer Campaign and White Paper

Backed by the findings of AMMF’s CCA data project, October’s Liver Cancer Awareness Month saw the launch of the charity’s major “Rethink Liver Cancer” campaign with social media coverage and a press release:

This has gained much media attention, most notably to date:  Mail Online / Mail on SundayThe Times and The Express

To coincide with the launch of the campaign, AMMF has prepared a White Paper, with a foreword from Professor Shahid Khan, outlining the findings of the data project and with specific asks for improvements to be made across the board. 

To find out more about the campaign and the White paper, see Rethink Liver Cancer Campaign and White Paper  

AMMF’s Research Awards

In July, the charity was delighted to award £230,000+ in the 2023 funding round to 6 UK and international research teams to support research into cholangiocarcinoma – details on these awards, and on some of AMMF’s previous funding awards, can be found here

New Therapies for Cholangiocarcinoma

During the year AMMF was invited, both as a patient facing organisation and a patient advocate, to submit written and oral statements in support of therapy appraisals, by the SMC (Scottish Medicines Consortium) and NICE (National Institute for Care and Excellence). We are especially grateful to two AMMF supporters with first-hand experience of CCA, Andrea Sheardown and Andy Clay, who also took part in the NICE appraisals and, acting as patient advocates, spoke on behalf of all those diagnosed with CCA. 

Pembrolizumab – 2nd line treatment for those with high microsatellite instability or mismatch repair deficiency CCA

Outcome currently awaited:
Durvalumab with Gemcitabine and Cisplatin, 1st line treatment. 
Ivosidenib.  For those with an IDHI mutation. 

Following on from the approval of pemigatinib in 2022 (2nd line for those with an FGFR2 fusion), which opened the door to molecular profiling for all diagnosed with CCA, these appraisals during 2023 represent – at long last – some important additions to the small number of therapies available for cholangiocarcinoma to this point.

And there is more on the horizon. There are a number of other therapies due to undergo NICE and SMC appraisal during 2024. 

BSG Guidelines for the Diagnosis and Management of CCA

Commissioned by the BSG (British Society of Gastroenterology) and published in GUT in September 2023, these are the most comprehensive guidelines for the diagnosis and management of CCA since 2012. Headed by Professor Shahid Khan, the guidelines were prepared by a multidisciplinary writing committee of UK experts from various specialties involved in the diagnosis and management of CCA each writing a section on their own area of expertise, and AMMF was delighted to be invited to contribute the section on Patient/Public involvement.  Although the guidelines are primarily aimed at clinicians, CCA patients could now share this document with their care team to ensure they are following the most up to date procedures.

To read more about this and to download the guidelines, click here.  

As we look to 2024 …

The Rethink Liver Cancer Campaign and a Westminster Reception

The Rethink Liver Cancer campaign is ongoing and will continue into the New Year, especially during February’s Cholangiocarcinoma Awareness Month when we will be holding a reception in Westminster, in the House of Commons Terrace Pavilion Room.  This event will be hosted by Elliot Colburn MP, Chair of the APPG on Cancer, and we will be sharing the details of AMMF’s White Paper and its asks with those who can change policy, and make a difference for those diagnosed with cholangiocarcinoma. 

Centres of CCA Expertise

The outcomes of the CCA data project and the publication of the new BSG Guidelines for the Diagnosis and Management of CCA have given AMMF the ammunition to begin work towards Centres of CCA Expertise.  First steps have been taken, a working group of some of the top experts in CCA has been set up, and we expect the project to gain momentum during 2024 …

And, of course, AMMF’s hybrid European Cholangiocarcinoma Conference will take place 08 – 10 May 2024.  For more details on this, click here

And Finally

Enormous thanks go to each and every one of AMMF’s supporters – we can’t do what we do without you!  At the heart of everything we do is the cholangiocarcinoma patient and their families – each and every day all of us at AMMF strive towards an improved future for everyone.  With your help, we will continue until that goal is reached.   

Helen Morement, CEO AMMF

1 ENS-CCA – European Network for the Study of Cholangiocarcinoma

2 ILCA – International Liver Cancer Association

3 ESMO – European Society of Medical Oncology

January 2024