EUROPEAN LIVER PATIENTS’ ASSOCIATION (ELPA) LAUNCHES CALL TO ACTION REPORT FOR THE TREATMENT OF HEPATIC ENCEPHALOPATHY
Hepatic encephalopathy is a brain dysfunction and complication of liver cirrhosis, that is estimated to affect up to 200,0001,2 people in Europe
BRUSSELS, BELGIUM, 12 October 2015, 18:30 CET – ELPA today launched a new call to action report ‘Time to DeLiver: Getting a Grip on HE’ at the European Parliament in Brussels. This is the first report from Europe to highlight the significant burden of hepatic encephalopathy on patients, their carers, families and society. The event was hosted by UK MEP Anneliese Dodds.
Hepatic encephalopathy is a potentially life-threatening neuropsychiatric condition associated with liver disease. Hepatic encephalopathy remains underdiagnosed and under-treated, resulting in poor quality of life for patients and a high burden on those who care for them.
‘Time to DeLiver: Getting a Grip on HE’ report, was authored by clinical and patient association experts from across Europe*. The report highlights ten calls to action which are critical to improve the identification, treatment and management of hepatic encephalopathy.
Tatjana Reic, President of ELPA stated “This report represents a very important milestone in the treatment of this debilitating condition, which affects thousands of people in Europe each year. For too long, people living with hepatic encephalopathy have been misdiagnosed and overlooked by healthcare systems. This report is clearly setting out the standards of care that need to be in place to manage this condition, and we are looking forward to working with governments and patient associations across Europe to help improve the management of this condition.”
“This report is a turning point. I hope that my colleagues in the European Parliament can help implement the report’s calls to action which will help to recognise the importance of hepatic encephalopathy and improve its treatment,” commented Anneliese Dodds, MEP for the South East of England.
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The development of the ‘Time to DeLiver’ report was sponsored by Norgine B.V.
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Note to Editors
Time to DeLiver: Getting a Grip on HE report
The Time to DeLiver Getting a Grip on HE report can be read in full on the ELPA website www.elpa-info.org
Ten points Calls to action
- Healthcare professionals, patient associations, and governments need to recognise and address potential barriers caused by the stigma associated with advanced chronic liver disease and to raise awareness of advanced chronic liver disease and hepatic encephalopathy among the general public and healthcare professionals.
- Healthcare providers, policy makers, and patient organisations should work together to properly assess the impact of hepatic encephalopathy on patients and caregivers, and on healthcare resources. We call for the ICD-10 revision to re-instate the code for hepatic encephalopathy to facilitate this.
- Patients, and in particular carers, should be made aware of the signs and symptoms of hepatic encephalopathy and its common precipitants. The Hepatic Encephalopathy patient information publication (available at: www.britishlivertrust.org.uk/liver-information/liver-conditions/hepatic-encephalopathy/), for example, provides useful information for patients, families and carers.
- Patients and carers must have access to an informed point of contact who can provide advice and organise interventions at an early stage.
- All healthcare professionals should be capable of identifying symptoms suggestive of hepatic encephalopathy and taking appropriate action. We call for comprehensive training and education to be provided to ensure this is possible.
- There is a need for short simplified guidelines defining the best practice care and support for people with hepatic encephalopathy, which is easily applicable and usable in clinical practice by a range of healthcare professionals.
- Healthcare professionals should have the freedom to prescribe treatments to improve the quality of life of their patients with hepatic encephalopathy through a flexible approach to suit individual patients.
- Reimbursement for approved therapies is a priority to allow individualised care and support and to remove any financial barriers to accessing these treatments.
- Liver patient organisations should survey their members to better identify what support patients and carers would like/benefit from and then either provide them or campaign for health services to provide them accordingly. Healthcare providers should identify how to improve care pathways for hepatic encephalopathy through joint working and a shared voice scheme.
- Policy makers should work together with healthcare professionals, patients and carers to develop a best practice/standard of care for managing hepatic encephalopathy and apply at a national level.
The following experts formed Time to DeLiver steering committee: Professor Andrea De Gottardi, Consultant Hepatologist, University Clinic of Visceral Surgery and Medicine Inselspital, Switzerland; Andrew Langford, CEO, British Liver Trust, UK; Ingo van Thiel, Editor, Deutsche Leberhilfe e.V, Germany; Lynda Greenslade, Clinical Nurse Specialist in Hepatology, Royal Free London NHS Foundation Trust, UK; Margaret Walker, CEO, European Liver Patients’ Association; Richard Hall, Co-Founder, Liver4Life, UK.
About Hepatic Encephalopathy
Hepatic encephalopathy is the term used to describe a complex and variable neuropsychiatric condition of patients with acute or chronic liver disease, more commonly associated with advanced cirrhosis. Patients with hepatic encephalopathy may experience symptoms ranging from subtle, clinically indiscernible neurological abnormalities, to severe neurological impairment.
ELPA’s 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 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. ELPA was formally launched in Paris on April 14th 2005 and now has 35 members from 27 countries. For more information please visit www.elpa-info.org
Norgine is a European specialist pharmaceutical company that has been established for over 100 years. In 2014, Norgine’s total revenue was €296 million and the company employs over 1,000 people.
Norgine provides expertise and ‘know how’ in Europe to develop, manufacture and market products that offer real value to healthcare professionals, payers and patients. Norgine’s approach and infrastructure is integrated and focused upon ensuring that Norgine wins partnership opportunities for growth. Norgine is headquartered in the Netherlands and its global operations are based in Amsterdam and in Harefield, UK. Norgine owns a R&D site in Hengoed, Wales and two manufacturing sites, one in Hengoed, Wales and one in Dreux, France. For more information, please visit www.norgine.com. In 2012, Norgine established a complementary business Norgine Ventures, supporting innovative healthcare companies through the provision of debt-like financing in Europe and the US. For more information, please visit www.norgineventures.com.
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Alex Davies, Tonic Life Communications, Mob: +44 7720 496472, Email: [email protected]
Charlotte Andrews, Norgine, Mob: +44 7714 061 485, Email: [email protected]
Margaret Walker, ELPA, Mob: + 44 7747 121 175, Email: [email protected]
1 Blachier M et al, The burden of liver disease in Europe: a review of available epidemiological data. European Association for the Study of the Liver. 2013
2 Amodio P et al. Prevalence and prognostic value of quantified electroencephalogram (EEG) alterations in cirrhotic patients. J Hepatol. 2001;35(1):37-45