Posted: 15-Apr-2005 << BACK
New European Liver Patients Association Formed to Raise Awareness See bottom of page for copy of report.
Paris 14th April 2005
New survey results were announced today estimating that some 27 million people in Europe are suffering from some form of liver disease and that there are widespread and significant differences in the care and treatment available to them. The results were presented in a report The Liver Report Liver Disease in Europe and the Mediterranean Basin during the 40th Annual Conference of the European Association for the Study of the Liver (EASL) in Paris, France. The report, authored by the newly formed European Liver Patients Association (ELPA), highlights the glaring lack of proper monitoring across the whole of liver disease. This, together with low levels of awareness is, the report claims, a particular danger with regard to hepatitis C. What especially concerns us about hepatitis C, says Charles Gore, ELPAs President, is that it is infectious and there is no vaccine available. This makes it a major public health issue.
The report says there are 5 million people infected with hepatitis C in ELPAs European member countries alone, the prevalence rate of 1.7% being almost identical to that in the US (1.8%). It also reveals that there are significant differences between countries in access to treatment, that most countries do not have a national strategy or screening programme and that testing is not even free in some countries.
On the basis of this report, ELPA is launching a petition calling on the European Union and its member states to develop a co-ordinated and consistent programme across Europe of awareness, prevention and care for viral hepatitis.
This is exactly the sort of thing ELPA has been created to do, says Charles Gore, referring to todays formal launch of the organisation. Patients need to lead the way in campaigning for change but it is imperative also that we get support from the EU and from the medical profession.
Professor Massimo Levrero, the Secretary of EASLs Scientific Committee and present to support ELPAs launch echoes this: We whole-heartedly welcome the creation of the European Liver Patients Association because a true partnership between doctors and patients is essential in delivering optimal healthcare.
The European Liver Patients Association (ELPA)
ELPA emerged from a desire amongst European liver patient groups to share their experiences of the often very different approaches adopted in different countries. In June 2004, 13 patient groups from 10 European and Mediterranean Basin countries met to create the association. Now with 16 members from 11 countries ELPA is being formally launched on April 14th 2005 during the European Association for the Study of the Liver (EASL) conference in Paris (please see end for full list of members).
ELPAs aim is to promote the interests of people with liver disease and in particular: to highlight the size of the problem; to promote awareness and prevention; to address the low profile of liver disease as compared to other areas of medicine such as heart disease; to share experience of successful initiatives; to work with professional bodies such as EASL and with the EU to ensure that treatment and care are harmonised across Europe to the highest standards.
ELPA Members
Carrefour Hpatites - Aide et Contact (CHAC), Belgium
Vereniging voor Hepatitis Patinten (VHC), Belgium
Uloh 'Hepatos', Croatia
Association of Hepatitis Patient Care, Egypt
Association ALBI, France
Hpatites Ecoute et Soutien (HES), France
SOS Hpatites Fdration, France
Deutsches Hepatitis C Forum e.V., Germany
Deutsche Leberhilfe O.V., Germany
Educazione, informazione e Prevenzione sullEpatite C (EpaC), Italy
Fondazione Amici DemmEpatologie (FADE), Italy
The National Hepatitis Centre, Netherlands
Sano-Hep, Romania
Riksfreningen Hepatit C (RCH), Sweden
SOS Hpatites Genve, Switzerland
The Hepatitis C Trust, United Kingdom
Attachment: ELPA Report.pdf
