| |
Building a liver disease policy in the European Union
|
| |
| |
Jean-Michel Pawlotsky (EASL Secretary General)
Hepatology, published online 01 April 2008.
Uncorrected Proof
1. Introduction
Since its creation in 1966, the European Association for the Study of the Liver (EASL) has established itself as the leading pan-European association of medical professionals dedicated to promoting liver research and care in Europe. EASL succeeded in becoming a powerful association in the field of hepatology with a strong administrative and financial capacity which allows us to sustain our leading role. EASL's membership today stands at over 1500 specialists in liver research and disease care and our annual meeting is recognised worldwide for its outstanding quality and relevance. Furthermore, since the introduction of the Sheila Sherlock Fellowships, almost 40 young researchers have benefited from support to their research in a European country different from their country of origin. EASL has also developed bursaries to encourage young and promising colleagues and to facilitate their participation to our scientific meetings. Finally, the Journal of Hepatology has been for a long time now, a substantial contribution to the dissemination of knowledge and expertise across the community of professionals involved in liver research and care, acknowledged by a constantly increasing impact factor.
Our achievements are significant and yet, there is always more to be done. Liver diseases are killing too many people in the European Union (EU), where their prevalence is now estimated to be 6%, i.e. approximately 29 million people. In spite of their high prevalence, however, liver diseases are all too often neglected by both national and EU policy-makers. From a policy perspective, despite the fact that chronic liver diseases are the fifth cause of death in the EU, they are not recognised as a priority in either EU health or research policy. In addition, with a significant number of different diseases (like cardiovascular diseases, cancer and diabetes) competing for the attention of decision-makers and thus inclusion in legislative measures, liver diseases tend to get lost as a result.
By building on our achievements as a professionals' organisation, EASL therefore decided to work towards addressing these shortcomings and to shape the European policy environment. Overall, we aim to win recognition of liver diseases as a major cause of illness and death affecting too many patients in the EU. To achieve this aim, a European advocacy and communications strategy is in the process of being developed. Its objectives are threefold:
·To make liver diseases a priority both in EU public health policy and research policy.
·To raise EASL's profile as an association and to establish its members as points of reference and key advisors to European policy-makers.
·To increase awareness amongst citizens about the causes of liver diseases, prevention and screening.
2. Towards building an EASL EU advocacy and communication strategy
Because we are doctors and professionals, with full-time jobs (and often multiple functions and responsibilities) and with little experience in policy and advocacy, we thought it was important, before engaging in advocacy activities in the EU, to better understand the EU political environment, its workings, its priorities and current main developments. To this end, in the summer of 2007, EASL carried out an EU policy and stakeholder mapping (a benchmarking) which reached the overarching conclusion that, while liver diseases are not currently recognised as a priority issue in the EU's health policy, there are a number of existing and upcoming EU policy initiatives which are highly relevant to EASL and to liver diseases and which therefore would benefit from our expertise being brought to bear.
We also realised that EASL should take a step-by-step approach vis-a-vis the EU. Indeed, at first, we should work on those issues which are already on the EU policy agenda such as research, alcohol and rare diseases. It is only after having achieved confidence in our advocacy skills, built consensus and strong relationships with decision-makers and established long-lasting alliances with other organisations, that EASL will be in a position to deal with the "bigger picture" and raise awareness in the EU about liver diseases as a whole.
3. Seeking engagement opportunities for EASL in the EU
The EASL policy and stakeholder mapping mentioned above identified specific policy areas of particular relevance to EASL in the EU policy arena. These are health research, specific diseases like viral hepatitis, non-alcoholic steatohepatitis or liver cancer, as well as the determinants of liver diseases including nutrition and alcohol.
On research, the Seventh Framework Programme for Research (FP7) allocates record funds to health between 2007 and 2013. Although liver diseases are not mentioned specifically among its priorities, there are opportunities of including references to liver research in the annual work programmes and to achieve recognition of liver disease as a priority in its own right in the next Framework Programme. At a meeting with representatives of the European Commission's Directorate General for Research in November 2007, EASL was asked to provide input on projects it wished to see funded under the current research programme. In January 2008, we have also engaged in discussions with the Members of the European Parliament as a key step towards securing political support for more emphasis on liver diseases in the current and future research priorities of the EU.
On viral hepatitis, EASL's activities are focused on two main issues: on the one hand, we wish to increase research funding for viral hepatitis which, despite being the most prominent liver disease, remains a low priority in terms of EU research funding and public health action. On the other hand, given that viral hepatitis is on the rise in developing countries, EASL argues for the recognition of viral hepatitis as a fourth poverty-related disease (alongside HIV, tuberculosis and malaria). In this respect, in November 2007, EASL met with officials from the Directorate General for the Development in the European Commission and sought recognition of hepatitis alongside HIV/AIDS, malaria and tuberculosis. EASL is also in the process of raising this issue with the French government which will be leading the organisation of the Euro-Mediterranean Conference on Health to take place in Egypt in 2008.
EASL is also engaging in activities marking World Hepatitis Awareness Day (WHAD). On WHAD 2007, EASL participated in a policy seminar on viral hepatitis in the European Parliament, and later discussed with the individual members of the European Parliament ways to tackle these diseases at EU level. On WHAD 2008, EASL will collaborate with the European Liver Patients Association (ELPA) to jointly organise a dedicated seminar in the European Parliament focused on viral hepatitis in Europe and calling for more research funding for the development of the hepatitis C vaccine and the implementation of EU-wide screening and vaccination programmes.
Liver cancer is another key topic in our policy involvement, mainly due to the status of cancer as the EU's main health priority. Given that so many cases of primary liver cancer are preventable through public health interventions such as promoting viral hepatitis care and management, preventing alcohol abuse and encouraging healthy diets, EASL in collaboration with ELPA has addressed this issue recently with the current Slovenian Presidency of the EU, whose main health priority focuses on cancer.
Other areas of EASL's European policy advocacy include alcohol-related disorders, healthy diets, rare diseases, organ donation and transplantation. These are being monitored currently in order to assess the best way and the most appropriate timing for EASL to contribute to debates on these subjects. In particular, EASL has recently submitted a response to the public consultation held by the European Commission in November 2007-February 2008 on European action on rare diseases. In the submission, EASL has recognised that there is value-added to EU action on rare diseases and has called on the EU, inter alia, to avoid rigid frameworks and guidelines and to coordinate public health activities in close cooperation with European academic/scientific associations, in order to maximise the expertise available to decision-makers.
4. Making the case for the liver
EASL's involvement in policy issues is an important opportunity to "make the case for the liver". Our dialogue with EU decision-makers as well as the development of a strong relationship with patients' associations will complement and maximise EASL's scientific expertise and reputation. Our advocacy involvement will ultimately contribute to the wider recognition of EASL for its scientific excellence as well as providing tangible input into EU health policies.
Engaging in EU policy work is a major undertaking. It will mean translating our scientific knowledge into political arguments aimed at encouraging politicians to prioritise liver diseases in health and research policies. EASL will use its scientific expertise to advise policy-makers and to fill the information and perception gaps that remain with regard to liver diseases. As a community of medical professionals, we can all contribute to EASL's success in shaping health policies. In this respect, EASL is organising a Seminar on EU policy at its 43rd Annual Meeting in Milan which provides a more detailed update on EU policy activities, as well as opportunities for direct input and discussion.
5. Conclusion
Science and policy have the potential to create synergies for the benefit of all. As a leading scientific association, EASL's role, and our responsibility is to seek policy recognition for the focus of our activity, so as to shape an environment conducive to research and health initiatives on liver diseases. We aim to do this, and to take scientific and medical excellence to the next level.
|
|
| |
| |
|
|
|
