Open Letter to the President of the European Commission, Ursula Von der Leyen, the Members of the European Parliament, and the President of the European Council, Charles Michel
10 Asks to Improve Liver Cancer Care in Europe
Wednesday, 23 June 2021,
Dear President of the European Commission, Ursula Von der Leyen,
Dear Members of the European Parliament,
Dear President of the European Council, Charles Michel,
EASL is writing you this Open Letter representing the scientific liver health community in Europe and with the endorsement of relevant scientific societies, patient advocacy organisations, and public health associations engaged in the improvement of care for patients with liver cancer.
Cancer originated in the liver, generally named liver cancer, is the sixth most common cancer and the third most frequent cause of cancer-related death globally. Hepatocellular carcinoma (HCC) represents about 90% of liver cancers and is consequently a major global health problem. The incidence of HCC increases progressively with advancing age in all populations, reaching a peak at 70 years.
There are many risk factors for developing liver cancer, and chronic liver diseases caused by viral hepatitis, alcohol, or fatty liver disease (NAFLD and NASH) are the most important. That treatment of these chronic liver diseases to avoid disease progression to precancerous states like cirrhosis significantly reduces the risk of liver cancer has been convincingly demonstrated. Therefore, improved and equal access to state-of-the art management of these diseases is a core element in the fight against liver cancer.
In Europe 2020, the average age-standardised annual incidence rate of liver cancer was 5.2 per 100,000 persons. Put differently: ~87,000 Europeans were diagnosed with liver cancer in 2020, and ~78,000 have already died from the disease. Patients are diagnosed late, with 51% in an advanced cancer stage already at the time of diagnosis. Such patients have less than a year to live. In total, there has been a 70% increase of liver cancer-related mortality in the EU from 1990 to 2019.
In the USA, the rate of deaths from liver cancer increased by 40% from 1990 to 2004 while the overall rate of cancer deaths declined by 18%. Projections for the USA estimate that, in 2030, liver cancer will be the third-leading cause of cancer-related deaths, surpassing breast, colorectal, and prostate cancers.
Although liver cancer remains one of the few cancers with increasing incidence and mortality, the public awareness of liver cancer appears to be much lower than for other cancers. As a consequence, patients who have liver cancer and patients who are at increased risk for liver cancer often face stigma in their social lives, and also in the medical care setting.
Treatment options for liver cancer have been significantly improved over the recent years, which makes early diagnosis the most critical point. Therefore, case finding strategies need to be implemented broadly, at least in at risk patients, as strongly recommended by clinical guidelines.
Last but not least, we must directly tackle the key environmental factors that cause liver diseases and liver cancer. In addition, successful hepatitis B vaccination programmes need to be continued and expanded as the core element of primary liver cancer prevention as it has the potential to prevent roughly twice as many cancer cases as the human papilloma virus (HPV) vaccination does.
In this context, we are addressing the following 10 Asks to Improve Liver Cancer Care in Europe:
- The EU and Member States should ensure adequate awareness, prevention, and management standards for liver cancer across all regions and countries. Pivotal elements on this path include education and awareness-raising, especially among healthcare professionals, patients and families, risk groups, policy-makers and the general public.
- The EU and Member States should ensure improved access to better disease management for patients with liver cancer across all member states of the EU. An essential first step towards equally high standards of care across Europe is the implementation of structured patient pathways comprising diagnostics, treatment, and follow up in a cross-sectoral way (hospital, outpatient, and home care).
- The structured patient pathways (see 2, above) need to be based on the most up-to-date and comprehensive scientific evidence. Therefore, the EU and Member States should encourage enhanced inter-disciplinary cooperation between hepatology, oncology, and other relevant disciplines.
- The EU and Member States should also encourage all relevant experts and their accompanied societies and organisations to develop clinical guidelines collaboratively addressing the management of liver cancer (treatment and prevention) on the basis of the most comprehensive scientific evidence.
- Patients and their families should have unrestricted access to information, medical treatment, and measures to improve the quality of life, regardless of their life situation and ethnic origin. The EU and Member States should reduce existing inequalities and ensure that all patients with liver cancer can benefit from the same high standards of care.
- Some liver diseases, e.g. viral hepatis B and C, alcohol-related and non-alcoholic fatty liver disease, are associated with a high risk of liver cancer. Early detection would be critical for these patients. Therefore, the EU and Member States should add liver cancer to their screening scheme list, at least for patients with underlying risk factors. In addition, existing programmes providing the opportunity of early case finding of liver diseases should be leveraged where possible (e.g., salivary screening for hepatitis C, using point-of-care testing, which would match with the World Health Organizations’s HCV programme aiming at fighting HCC as well).
- Liver cancer occurs in response to environmental risks and as a consequence of an underlying liver disease. Therefore, the EU and Member States should implement preventive measures, including: evidence-based strategies for alcohol and obesity, hepatitis B vaccination, risk education, and consumer labelling of alcohol as a carcinogen.
- The high standard of care in the EU is based on high-level science and research. In order to maintain these standards furthermore and drive improvements, it is essential to collect data collaboratively across all Member States. The EU and Member States should support the setting up of specific patient registries for liver cancer. The collection of these data would facilitate surveillance, research, and the overall management of patients with liver cancer.
- In addition, basic research continues to be a critical element improving patient outcomes in liver cancer. There is still further knowledge needed about aetiology, rare liver cancer entities, markers, and diagnostics which might facilitate early detection even in primary care. The EU and Member States should support such research projects and cross-country collaboration by setting up EU-wide platforms with the aim of sharing data and closing the gap between medical knowledge and clinical practice.
- Europe’s Beating Cancer Plan is the ideal platform to implement all the actions mentioned above. For the immediate benefit of all patients, we ask the European Commission to urgently call all relevant scientific societies, experts, and patient groups to get actively involved in the nine asks.
Together with all signatories, EASL will fully contribute our expertise, knowledge and capacity to implement these 10 Asks to Improve Liver Cancer Care in Europe. We pledge our cooperation with EU institutions and within the existing EU health programmes, such as the EU Beating Cancer Plan and the EU4Health programme.
Prof. Thomas Berg, EASL Secretary General Elect, Head of the Division of Hepatology, Department of Medicine II, Leipzig University Medical Center, Germany
Prof. Maria Buti, EASL EU Policy Councillor, Professor of Medicine and Chief of Internal Medicine and Hepatology at the Hospital General Universitari Valle Hebron, Barcelona, Spain
Prof. Francesco Negro, EASL Governing Board Member, Full Professor at the Divisions of Gastroenterology and Hepatology and of Clinical Pathology, University Hospital of Geneva, Switzerland
Marko Korenjak, President, European Liver Patients’ Association (ELPA)
Prof. Peter R. Galle, Liver Cancer Expert, the University Medical Center Mainz, Germany, and former President of The German Association for the Study of Liver Diseases
Prof. Peter Jepsen, Clinical Professor of Hepato-epidemiologist & Liver Cancer Expert, Aarhus University Hospital, Department of Hepatology and Gastroenterology, Denmark
Prof. Massimo Colombo, Viral Hepatitis, Liver Transplantation and Liver Cancer Expert, Chair of EASL International Liver Foundation (EILF), MD, Professor of Medicine, Head of Translational Liver Research, IRCCS, Humanitas, Milan, Italy
Prof. Nathalie Carrie, Liver Cancer Expert, Service d’Hépatologie, Hôpital Avicienne, Bobigny, Université de Sorbonne Paris Nord, France
Prof. Jerzy Jaroszewicz, Liver Transplant, Viral Hepatitis, Cirrhosis Expert, Vice President of Polish Association for the Study of the Liver (PASL), Department of Infectious Diseases and Hepatology, Medical University of Silesia, Poland
EASL is inviting the scientific liver health community in Europe and all relevant scientific societies, patient advocacy organisation, and public health associations engaged in the improvement of care for patients with liver cancer to sign the Open Letter on Liver Cancer Care.
The Open Letter can be signed by individuals, in their personal capacity, or acting on behalf of an organisation.
Contact information and coordination of this initiative:
The European Association for the Study of the Liver
Yoanna Nedelcheva, EASL Policy and Public Health Coordinator: firstname.lastname@example.org