On 26 February 2019, the European Liver Patients’ Association (ELPA) held a policy roundtable entitled ‘The burden of Liver disease in Europe: The case of Hepatic Encephalopathy’ in the European Parliament. The event, co-hosted by the Members of the European Parliament (MEPs) MEP Cristian-Silviu Bușoi (EPP) and MEP Tiemo Wölken (S&D), brought together policymaker and high-level EU stakeholders in liver disease as well as related fields such as brain.
The reference document for the roundtable was ELPA’s new policy white paper focused on the key challenges facing people with HE in Europe and the policy actions which are required to secure a better future for people with HE.
The purpose of this meeting report is to summarise the key discussion points of the roundtable and outline concrete policy recommendations which emerged from the discussion, as well as the next steps to pursue them.
Introduction: MEP Cristian-Silviu Bușoi
MEP Cristian-Silviu Bușoi initiated the meeting, highlighting that despite there being 200,000 patients suffering from HE in Europe, HE is not listed in the tenth revision of the International Classifcation of Disease (ICD-10). Although ELPA has successfully campaigned for HE to be included in ICD-11, implementation will only begin by the start of 2022. Mr Bușoi briefly discussed ELPA’s Time to DeLiver campaign and their new white paper, outlining the three key challenges identified in the paper. Mr Bușoi explained that the purpose of the meeting was to raise awareness about HE and to influence policymakers and decision makers, declaring that this is a political priority.
Introduction: MEP Tiemo Wölken
MEP Tiemo Wölken followed with an introductory statement emphasising why it is necessary to talk about liver disease in general, and HE in particular. Mr Wölken noted that liver disease is one of the greatest health epidemics of our times, with an estimated 500,000 sufferers in the EU, and highlighted the fact that many people are diagnosed and treated too late. Mr Wölken went on to express his disappointment that citizens in Europe are suffering from this condition as a result of not being diagnosed, treated or informed, insisting that change is needed so that everyone in Europe receives the right diagnosis and treatment.
Presentation of the HE policy white paper: Lana Crnjac, Interim CEO, ELPA
Lana Crnjac, Interim CEO of ELPA, presented ELPA’s new policy paper on `The burden of liver disease in Europe: The case of Hepatic Encephalopathy´. Ms Crnjac stated that the purpose of the paper is to highlight the issues faced b people with HE, their families and their carers and draw attention to the concrete policy solutions. Ms Crnjac gave an overview of the challenges surrounding HE in Europe which are highlighted in the white paper, including underdiagnosis and undertreatment, limited data and stigmatisation. The upcoming 2019 elections were noted as a clear opportunity for MEPs and other EU stakeholders to use the white paper to advocate on behalf of people with HE. Ms Crnjac concluded by calling on policymakers to take concrete action and declaring the white paper a starting point for this action.
Policy perspectives: Marko Korenjak, President, ELPA
Marko Korenjak, President of ELPA, began with a reminder that there is a limit on what patients can do themselves and this is why multistakeholder roundtable discussions are necessary. Mr Korenjak gave a brief background on ELPA and the roles of patient organisations more generally before outlining the objectives of the Time to DeLiver campaign. Mr Korenjak then presented ELPA’s proposed solutions to the challenges highlighted in the white paper, notably:
- MEPs and patient organisations should support national awareness as well as patient and carer access to an informed point of contact on HE
- MEPs, patient organisations and medical societies should support an EU level benchmarking exercise on the variation in clinical adherence to guidelines and clinical approaches to HE and develop a shorter and simpler version of the guidelines
- MEPs, patient organisations and medical societies should support timely implementation of ICD-11
- MEPs and patient organisations should support reform of value assessment methods and pricing and reimbursement systems and advocate for sufficient national and regional budgets to support reimbursement
Policy perspectives Frédéric Destrebecq, Executive Director, European brain Council (EBC)
Frédéric Destrebecq, Executive Director of EBC, gave an introduction to EBC as an organisation, highlighting key focus areras including risk reduction, addressing stigma, prevention, early detection and more, better coordinated research. Mr Destrebecq called for the coordination of research strategies across European and global brain initiatives as well as the facilitation of the emergence of research projects. The Value of Treatment study by EBC, which assesses the economic impact of access to brain disorder treatments, was highlighted as a potential research model which could be relevant in the case of HE.
The Roundtable Discussion
Teresa Casanovas Taltavull, Board Member, ELPA
Teresa Casanovas Taltavull, a Board Member of ELPA, pointed out that HE is a complication that could be reversible with timely access to liver transplant, but still not everyone in Europe has these possibilities. Ms Casanovas Taltavull underlined that it is crucial to talk about clinical interventions and that social and economic benefits are especially important to highlight as there are many direct and indirect costs related to HE. She stressed the importance of looking for solutions to support early access to treatment.
Bharat Amlani, Medical Director, Brand & Lifecycle, Norgine
Bharat Amlani, Medical Director, Norgine, expressed his disappointment that it will take four years to implement ICD-11 and identified this as a big challenge in HE. Mr Amlani spoke of his personal experience of HE and the increased risk of having a second episode due to not getting the right treatment. Through this, Mr Amlani emphasised the importance of pushing to implement EASL’s guidelines on HE. In response to Mr Destrebecq’s presentation, Mr Bharat agreed that it is important to invest in research, but highlighted that in the case of HE, good treatments are already available - the problem is that they are not accessible to patients.
Frédéric Destrebecq, Executive Director, EBC
Mr Destrebecq expressed his agreement and indicated the need to find the right arguments in order to convince policymakers, MEPs and national governments. Mr Destrebecq highlighted that it is possible to demonstrate concrete benefits, given that the symptoms of HE are reversible and that, if the guidelines were implemented, the lives of 200,000 people in the EU could be changed.
Tove Frisch, Board Member, ELPA
Tove Frisch, Vice President of ELPA, strongly stressed the importance of addressing the connection between liver and brain disorders, since the brain and the liver are so closely connected.
Professor Françoise Smets, European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN)
Prof. Smets, member of ESPGHAN, underlined that there is also a large number of children suffering from HE and that they, more than others, have an urgent need for better diagnosis and treatment, given their developing brains. Professor Smets called for more studies to involve children at the same time as adults and for children to receive treatment at the same time. Ms Crnjac assured that this point would be reflected in the next edition of the Time to DeLiver campaign and an update of the white paper.
In response to a question by Professor Smets asking if there was a plan for a public campaign to make the issue of liver disease more appealing, members of ELPA talked about their ongoing projects aiming to raise awareness and tackle stigma.
Mr Destrebecq noted that current research is not demonstrating the interconnected link between the brain and the gastrointestinal system and called for an inclusive approach.
In response to a question from Mr Destrebecq on MEP action in HE, MEP Wölken stated that in order to convince other MEPs to take action, it is necessary to get their attention and for them to have more knowledge about liver disease, adding that it is important to raise more awareness and make the key challenges known.
A member of ELPA suggested that this kind of white paper needs to be translated into more languages so that it can be brought to national level and emphasised the importance of developing a strategy and action plan on how to proceed and how to promote the white paper.
Concluding remarks MEP Tiemo Wölken
MEP Wölken concluded the roundtable by reiterating that there are treatments available for liver disease and HE in particular and that there is a need to raise further awareness among the general public and especially policymakers within the next mandate. Mr Wölken underlined that more data is needed to understand the size of the problem and committed to fighting for a sufficient Horizon Europe budget for health and other research programmes financing health research.
Finally, MEP Wölken thanked the experts for their presentations and the participants for their observations, and agreed that ELPA should indeed include affected children in its publications on HE.
Key policy recommendations and next steps
There was broad support for the policy recommendations outlined in the new policy white paper and a commitment to pursue these recommendations in the 2019-2024 mandate.
Furthermore, participants supported the suggestions that the issue of children affected by HE should be addressed in the next edition of the Time to DeLiver paper, that there be closer collaboration between liver disease and brain initiatvies, and that the white paper be translated into more languages.