Hepatocellular Carcinoma (HCC) is the world’s 6th most common cancer and the 3rd most fatal. Every year, more than 98,000 European citizens are diagnosed with liver cancer, while around 89,000 die from the disease
The purpose of the White Paper on Liver Cancer is to assist health-policy makers from across Europe in identifying the key priority areas of unmet needs, with a view to implementing best practices for liver cancer patients, based on the currently available evidence.
The White Paper on Liver Cancer has been developed based on extensive research of recent data, expert consultations, and existing expertise within DiCE and ELPA.
DiCE and ELPA call upon all stakeholders across Europe to work together to ensure that best practices are implemented at every stage of the patient pathway in each country, giving every patient with liver cancer the best possible opportunity of a positive outcome.
Join DiCE and ELPA to increase equality of best practice implementation in the prevention, diagnosis, and management of liver cancer across Europe.
- University Medical Centre Ljubljana
- Medical Faculty, University of Ljubljana
- Slovenian Society of Infectious Diseases
- Slovenian Association for Gastroenterology and Hepatology
- Slovenian patient association for people with hepatitis – Slovenia HEP
- Cancer Patients’ Association of Slovenia
- WHO Country Office in Slovenia
The goal of this event is to emphasize the most urgently needed actions to tackle the multifaceted issue of liver cancer.
Liver cancer is steeply on the rise, unlike other preventable cancers, which are either stable or in decline. It is the sixth most common cancer and the third leading cause of cancer-related deaths. To tackle this growing burden, it is essential that the right measures are implemented: to ensure prevention and early detection, to address inequalities, and thus reduce the rising curve of liver cancer.
This event will convene key actors to facilitate a fruitful conversation among experts, policy–makers, and patients. They will discuss what effective and evidence-based policies could be implemented to tackle the disease burden. Political will is urgently needed to enable the empowerment of prevention and early detection of liver cancer and, in so doing, to save lives.
Biographies of confirmed speakers – ELPA/EASL event 22 October 2021
Igor Zorčič President of the National Assembly Republic of Slovenia.
The President of the National Assembly Igor Zorčič (1978) is a university graduate in law. After graduating from the Faculty of Law of the University of Ljubljana, in 2003 he got a job as a lawyer in the international claims department at a commercial insurance company. In the period from 2004 to 2009, he was an expert in criminal law at the District State Prosecutor’s Office in Krško. In 2006, he passed the state law exam. Three years later, he got a job in a law firm, where he worked as a lawyer until 2014, when he was first elected as a member of the National Assembly of the Republic of Slovenia. In the 2014-2018 term, he chaired the Committee on Infrastructure, Environment and Spatial Planning. As chairman of the committee, he advocated and promoted sustainable infrastructure projects. In the current term of office 2018-22, he was the leader of the SMC parliamentary group (Party of the Modern Center). After leaving the SMC party (March 2021), he is a member of the Non-attached Parliamentary Group (NeP).
John F. Ryan
John F. Ryan is Director of the Commission Public Health directorate since September 2016. He is currently the Commission representative on the Board of the European Centre for Disease Prevention and Control. Current priorities include management of the Covid pandemic, implementation of an EU cancer plan, antimicrobial resistance, vaccination policies, and the implementation of financial instruments to support health, including research.
My career in Medicine started in 2001 when I graduated from Medical School. I did my training in Internal Medicine in Castro Rendon Hospital (Neuquén, Patagonia) and then, moved to the Hospital Italiano in Buenos Aires where I did my Hepatology and Liver Transplantation training (2005-2007). In 2008 I moved to Barcelona to enter the BCLC, Liver Unit in Hospital Clínic of Barcelona as a pre-doctoral fellow and I have a faculty postion in the Liver Unit since 2016. Upon completion of a Master in Liver Research and a Degree in Statistics, I developed my Doctoral Thesis under the guidance of Professor Bruix. My area of interest has been the development of prognostic models for patients with liver cancer and evaluation of treatment options with special emphasis in systemic therapy. Additionally, I obtained a Degree in Immuno-Oncology at the University of Navarra that has facilitated the opening of a new area of research about immune modulation and cancer emergence after antiviral treatment. During my career focused in clinical research in liver cancer I have authored 58 manuscripts ORCID ID 0000-0002-5711-9534 with a total Impact Factor of 527.071 and an H-index=26. My current research at the Oncology Unit of Hopsital Clinic is funded by competitive grants where I am the Principal Investigator and by grants and contracts where I am a main collaborator both at the national and international level. At the same time, I am responsible for the coordination of the
educational events and short-term fellowship visits at the BCLC, while also being the mentor of three predoctoral trainees. I regularly review manuscripts for the major Hepatology journals and have been member of the Governing Board of the Spanish Association for the Study of the Liver and ILCA.
Marko Korenjak is the current President of European Liver Patient Association that represents 31 liver patient associations from 25 countries. He has two Masters Degrees, first from business and economy and second from international relations and diplomacy. His work is focused into patient advocacy at highest European level and is connected to changing the landscape of liver patients care. He is a member of PCWP at EMA, EASL Policy & Public Health Committee, EASL Task Force on Liver Cancer prevention, ECDC working group on monitoring hepatitis B and C in EU and WHO EURO Collaborating Committee on TB, HIV and viral hepatitis. In ELPA he leads a team that collaborates in 10 Horizon 2020 projects that represent 100 million EUR spend in high level liver research in more than 140 collaborating partners in European Union. For his work in 2017, he was named by The Economist Intelligence Unit as one out of the 18 most influential people in the world in the field of Hepatitis elimination.
Milan Mishkovikj, Msc.
ELPA (European Liver Patient Association) Board Director, Vice President of the Alliance of Patients' Organizations in N.Macedonia – APO, Member of Advisory Board Project HAREACT, Vice president/ Program Manager in Hepar Centar Bitola Milan Mishkovikj, Msc. is the founder of Hepar Centar Bitola (Liver Center of Bitola), North Macedonia. He currently serves as the organization’s Vice president and CEO. Milan is a faithful member of the Advisory Board Project; HAREACT (The Joint Action on HIV and Co-infection Prevention and Harm Reduction (HA-REACT) addresses existing gaps in the prevention of HIV and other co-infections, especially tuberculosis (TB) and viral hepatitis, among people who inject drugs (PWID). The three-year project was launched in late 2015 with core funding by the Health Program
2014-2020 from European Union (EU). Milan is also the founder/Vice President of the Alliance of Patients Organizations in N. Macedonia. Milan graciously attains the position as Director of the European Liver Patient Association (ELPA) As a case manager and caregiver, he is integrally involved in the life struggles of an ordinary patient. His worth-noting initiatives involve creating a patient-centric solution to get feedback from real patients and making decisions based on their needs and perspectives. To innovate the healthcare system, he has a strong interest in executing novel strategies that may positively impact, either directly or indirectly, on timely screening, immunization, diagnostics, medical treatments, as well as the social welfare system. He has great organizational skills, collaborates at an intellectual level with all types of media (PR) and healthcare related campaigns. He possesses excellent communication skills and can integrate well under stressful work environments as a team player and / or as a leader to conduct the work on numerous health projects. His input in improving the healthcare system is highly persistent. His main goal is to initiate different healthcare concepts in the N. Macedonia, European and world healthcare systems. He believes all initiatives need to have a close collaboration and support from different stakeholders. This includes scientists, policy decision makers, patients, and industrial corporate partners. His efforts need to be understood and supported by the international organizations (such as WHO, EU Commission). His actions are directed to inclusive and high-quality health recommendations at all levels, and the European dimension of health care for creating and maintaining a cohesive European society.Milan attained amaster’s in civil law degree from St. Kliment Ohridski University in Bitola. Milan represents North Macedonia as a voting member to GIANT (Global Immunization Action Network Team) He currently resides in Bitola, Macedonia.
Dr Teresa Casanovas (BIO)
European Liver Patients’ Association – ELPA, Associació Catalana de Pacients Hepàtics – ASSCAT Dr. Teresa Casanovas is a hepatologist, President of the Spanish ELPA Member association ASSCAT, ELPA Director, and Leader of the ELPA Scientific Committee. She worked in Hospital of Bellvitge from 1980 to 2016. She focused her career on clinical care and research dedicated to liver diseases and liver patients. She was involved in the start of the Liver Transplant Program, the first in Spain. She participated, as principal investigator, in numerous clinical trials for patients with viral hepatitis (mostly with treatment interferon based). She also I received research grants for studies on health related quality of life (HRQOL) in liver patients. Since she retired she is been advocating for liver patients at national and international level.
Julio discovered he had Hepatitis C by chance in 1994. He went through three year-long courses on interferon treatment. These years were not easy and Julio struggled with many challenges and questions and he looked for support. When he realized there are no support groups or patient associations for liver patients in Israel, Julio decided in 1998 to establish Hetz- the Israeli Organization for Liver Health. Today Julio is cured from HCV. Nevertheless, he dedicates his life to supporting liver patients and their families, strengthening Hetz's capacity to advocate for the PATIENTS' RIGHT TO KNOW they have a liver disease, and the government's obligation to screen and to treat them. Actually, Julio is directing HETZ and is representative of the patients in the National Council of Liver of the Ministry of Health in Israel.
Dr. Partha Basu
Dr. Partha Basu is an MD in gynecology and PhD in clinical oncology. He was trained as a gynecologic oncologist at Imperial College (Hammersmith Hospital), London. He is the former head and associate professor of Department of Gynecologic Oncology at Chittaranjan National Cancer Institute of India. He is presently the Deputy Head of Cancer Early Detection and Prevention Branch at International Agency for Research on Cancer, the specialized cancer agency of the World Health Organization. Dr. Basu’s pioneering research in cervical cancer prevention includes evaluation of efficacy and safety of different HPV vaccines and also the efficacy of a single dose of the vaccine, assessment of performance of cervical cancer screening and triaging tests in the limited resourced settings and development of a novel technology (thermal ablation) to treat cervical precancers. Evidence generated from these studies have informed several guidelines developed by the World Health Organization. Dr. Basu has actively engaged with the Ministry of Health of several countries to help them evaluate performance of their cancer screening programs and improve quality and coverage of such programs. Reducing inequalities in accessing cancer early detection and treatment in resource- constrained settings is another key focus of his research. Dr. Basu’s research projects are supported by Bill and Melinda Gates Foundation, National Cancer Institute of the USA, Medical Research Council of the United Kingdom, European Commission, American Cancer Society and other major funding agencies. He is project lead of the new WHO Academy initiative to launch a comprehensive learning program on cervical cancer screening and management.
Born in 1975, graduated from the medical school in Aarhus, Denmark in 2003. Since then clinical training and specialization in hepatology, alongside training in clinical epidemiology. I have published more than 100 papers, most of them in the field of hepato-epidemiology. I currently do half-time clinical work, half-time research. My primary interests are alcoholic liver disease and hepatocellular carcinoma, most notably the value of surveillance for hepatocellular carcinoma among patients with alcoholic cirrhosis.
Pierre Nahon is Professor of Hepatology at Jean Verdier Hospital in Bondy, APHP, France. He is also a clinical scientist at INSERM U1162, studying the constitutional genomics of liver cancer. Professor Nahon gained his medical degree from the University of Paris 13, before undertaking a PhD in biology. Subsequently he completed a Higher Degree for Research (HDR) at the University of Paris 13.
Professor Nahon’s research interests focus on the complications of cirrhosis, in particular hepatocellular carcinoma. He is the Scientific Coordinator of the French National Agency for Research on AIDS and Viral Hepatitis CO12 CirVir cohort, which is a prospective follow-up of nearly 1800 patients with compensated viral cirrhosis in 35 centres across France. This cohort allowed the achievement of numerous publications since 2015 in major international journals such as Journal of Hepatology, Hepatology, Gut and Gastroenterology. Professor Nahon is also the Coordinator of a GWAs within the Genetic work package of the French Hepatocellular Carcinoma Multi-technological Project (HECAM). More recently, he obtained funding for the implementation of a multicentric Phase 2 trial testing the efficacy of combining percutaneous electroporation with neo- and adjuvant immunotherapy for the treatment of hepatocellular carcinoma. He is a member of the editorial board of the Journal of Hepatology and is an ad hoc reviewer for numerous other scientific journals including Gastroenterology, Gut, Hepatology, Cancer Research, Liver International, Annals of Oncology and Carcinogenesis.
ELPA’s SYMPOSIUM and launch of the ELPA’s CALL TO ACTION on Fatty liver
September 22, 2021, was an excellent day for ELPA. It organized a Symposium on Fatty liver disease in children and its impact. That was also the occasion to launch its Call to Action on Fatty Liver.
The Symposium was opened by Mr. Demetris Papadakis, Member of the European Parliament – S&D Group, from Cyprus, who addressed the audience, stressing the role of the EU Member States in this field. The floor was then taken by Mr. Marco Greco, president of the European Patients; Forum,who underlined the importance of involving young patients in patients’ organizations at all levels.
The ELPA Scientific Committee Leader, Dr. Teresa Casanovas, introduced the next speaker, Prof. Manuel Romero Gómez, Director of the Gastroenterology Service, Hospital Universitario Virgen del Rocío, Sevilla, Spain. Prof. Gómezpresented the pros and cons of changing the name from NAFLD to MAFLD, and he talked about the stigma a simple expression can be associated with. Ms. Niki Alkistis, a clinical dietician and nutritionist from Cyprus, presented the importance of healthy eating.
Presentations by medical professionals continued with Prof. Volkan Demirhan Yumuk, Professor of Medicine, Division of Endocrinology, Metabolism & Diabetes, Istanbul University Cerrahpasa Medical Faculty, President-Elect of EASO (European Association for the Study of Obesity), Turkey. He explained to the audience why liver matters in obesity clinics. After his talk, Ms. Vicky Mooney, patient advocate and Executive Director of the European Coalition for People Living with Obesity, stressed, from a patient perspective, how lifestyle changes are not enough to tackle obesity. She described an excellent practice in Portugal, where educational programmes were put in place.
The management of Fatty liver disease specifically in children was described by Dr. Emer Fitzpatrick, Paediatric Hepatologist, CHI at Crumlin, Dublin, Ireland and King’s College Hospital, London, member of HepCom ESPGHAN. The role of nurses in multidisciplinary teams dealing with Fatty liver was tackled by Dr. Nuria Fabrellas, Professor Public Health, Faculty of Medicine and Health Sciences at the University of Barcelona, Spain.
The Symposium was wrapped up by three ELPA representatives. Dr. Teresa Casanovas, President of ASSCAT, Associació Catalana de Patients Hepàtics, Leader of ELPA Scientific Committee, ELPA Director, started this session presenting the stigmatization in children with obesity. Then, Mrs. Yiannoula Koulla, President of Cyprus Liver Patients’ Association, Leader of ELPA NAFLD / NASH group, showed the ELPA NAFLD/NASH survey results. Mr. Manuel Weiss Perez, FNETH – National Federation of Liver Patients andTransplanted, Spain, detailed the ELPA Call to Action on Fatty liver and encouraged everybody to endorse it.
Before the closing remarks by Marko Korenjak, ELPA President, a video animation made by Hetz – Israeli Association for The Health Of the Liver was streamed. It showed how digital tools could be helpful in the framework of children’s education.
The last words by Marko Korenjak, ELPA President, were about the 10 EU-funded Medical Research Project ELPA is currently involved in. These projects involve more than 120 different partners. However, our society and the liver patientscommunity need to craft projects revolving around NASH in children, preventing this disease, and raising awareness on it.
ELPA is part of the EASL Policy and Public Health Committee
Marko Korenjak, ELPA President, has been nominated as patients’ representative in the EASL Policy and Public Health Committee.
The mission of the Committee is to provide EASL with expert scientific and policy guidance to enable it to carry out its public affairs activities and achieve its public affairs goals and objectives.
The Policy and Public Health Committee members are responsible for coordinating the development of:
Policy and Public Health Committee members are expected to be able to attend monthly conference calls, and up to two face–to–face meetings per year, subject to the evolution of the COVID-19 pandemic.
This is a further step towards an even deeper collaboration between ELPA and EASL.
ELPA is an official member representing non-governmental organisations – patients, of the Advisory Forum of the European Centre for Disease Prevention and Control (ECDC).
ELPA President Marko Korenjak has been selected to be part of the Advisory Forum. An assembly aimed to support the Director in ensuring the scientific excellence and independence of activities and opinions of the Centre. It constitutes a mechanism for an exchange of information on health threats and the pooling of knowledge. It also ensures close cooperation between the Centre and the competent bodies in the Member States in particular on the following items:
• coherence of the Centre’s scientific studies with the Member States;
• in those circumstances where the Centre and a national body cooperate;
• the promoting, starting up, and supervising of the European networks within the fields of the Centre’s mission;
• the setting up of scientific panels by the Centre;
• scientific and public health priorities to be addressed in the work programme.
The main task of the patient organisation representative is patient advocacy to ensure that patient and public perspectives are taken into account in the advice to the ECDC Director, in support of the overall role of the Advisory Forum.
ELPA is honoured to be part of the Forum, and it will work together with the rest of the team to improve the work of ECDC putting patients in the spotlight.
The fourth and last day of the ELPA Educational Training took place on July 7, 2021. Three presentations from pharma companies were scheduled, and this was probably the most interactive day of the entire training.
The morning started with a representative from Novo Nordisk, Dr. Ichhya Shrestha, MD – Global Medical Manager, giving an overview of the companies’ commitment to NASH. Differently from the usual, all the presentations were accompanied by questions and answers from both parts. This last day session was turned into a kind of dialogue between pharma and patients’ representatives. NASH is a field that really passionate ELPA Members because it represents one of the biggest challenges of the future, and this was also reflected in the exchanges that was mainly based on how to increase the awareness among both patients and medical doctors, the unmet needs in this area, the importance of the name changing into MAFLD and the correlation with other conditions. Dr. Shrestha finished her presentation by giving some details related to the Novo Nordisk NASH pipeline in clinical development.
After a short break, Dr. Laurent Domas, VP Global Interventional Oncology Strategy and Therapy Development at Terumo, took the floor. He presented Interventional Oncology as the 4th pillar of cancer care, and he went through different ‘tools’ in the Interventional Oncology box. Dr. Domas also linked these options and procedures to the different stages of liver cancer. He finished his presentation comparing HCC guidelines over the years and shoving how today, the focus in this field is improving therapies that preserve liver function for longer survival. He also stressed that the future direction is represented by a combination and personalization of all these therapies. ELPA Members asked many questions regarding the therapies presented and, together with Dr. Domas, agreed on the importance of having a multidisciplinary team following the patient’s journey.
The third and last presentation was delivered by two representatives from Ipsen, Ms. Pascale Cavillon, Global Patient Centricity Director, and Dr. John Boyer, Global Medical Director Oncology. The first part was dedicated to Ipse’s commitment to patients and its proactive approach to patient-centricity. As stressed by Mr. Marko Korenjak, ELPA President, this is also proven by the long and fruitful relationship Ipsen has with ELPA. Ms. Cavillon then pointed out that by working with people living with conditions, their families, and caregivers, Ipsen can understand the whole picture to help it deliver real and innovative solutions together and faster, making a meaningful difference. Then the focus moved on working with patients’ organizations in the field of cancer. Dr. Boyer shared a patient experience framework representing the journey of patients with HCC. The presentation ended with an overlook to the global/local past collaboration with ELPA on HCC and a glimpse at future activities.
The third day of the ELPA Educational Training took place on June 30, 2021, and focused not only on presentations delivered by pharma companies‘ representatives.
The meeting started with Ms. Mireia Alemany, who presented ‘A Healthy Liver Will Always Deliver!‘, a comic to raise NAFLD awareness and promote healthy lifestyles.Firstly she explained some general concepts related to why comics are an excellent way to come across medical content. Then she gave more details related to the comics born in the Fois Gras Project framework – funded under Horizon 2020 Marie Sklodowska-Curie program – and in collaboration with: metabolic patients, psychologists, sociologists, and a European network of biomedical researchers.
After the presentation, a questions and answers session, moderated by Mr. Marko Korenjak, ELPA President, allowed the participants to go deeper into details. Attendees were particularly active, and questions were mainly focused on the possibility to translate the comic into more ELPA Members‘ national languages.
The second presentation was delivered by Dr. Florian Abel, MD, and Dr. Brian Meltzer, MD, representatives from Alexion Pharma. They gave an overview of Alexion‘s commitment to the field of two specific rare liver diseases: Lysosomal Acid Lipase Deficiency (LAL-D) and Wilson Disease. They both also stressed the patients’ journey towards a diagnosis and their challenges.
Before Mr. Marko Korenjak wrapped up the meeting, as it happened after the first presentation, Alexion’s presentationwas followed by many questions primarily related to clinical trials and the importance of working together with patients associations to raise awareness on these two rare diseases.
The second day of the ELPA Educational Training took place on June 23, 2021. After the first day that hosted presentations on Horizon 2020 medical, scientific projects, the second day focused on presentations delivered by pharma companies’ representatives.
The meeting started with Dr. Salvador Augustin, MD from Boehringer Ingelheim, who focused his presentation on Boehringer Ingelheim’s NASH Pipeline Program updates. First, he stressed the unmet needs in NASH treatment and how this is a complex disease. Then, he gave an overview of BI’s upcoming clinical trials in 2021.
After the presentation, a questions and answers session, moderated by Mr Marko Korenjak, ELPA President, allowed the participants to go deeper into details. Attendees were particularly active, and questions were mainly focused on patients’ participation in clinical trials, the lack of information and awareness regarding NASH, and how this topic must channel efforts from all the involved stakeholders.
The second presentation was delivered by Dr. Ed Tucker, MD Chief Medical Officer at Mirum. He gave an overview of Mirum’s commitment to the field of rare liver disease, detailing how they are addressing rare liver diseases for children and adults. He stressed that there are many unmet needs regarding this topic, which is also why patients’organizations are crucial. In conclusion, he showed the participants Mirum’s road to delivering new treatments for rare liver diseases.
Before Mr Marko Korenjak wrapped up the meeting, as it happened after the first presentation, Dr. Tucker’s talk was followed by many questions especially related to clinical trials and ICP in pregnancy.