Hep-CORE - first ever patient led study
In an attempt to shed light on national policies on hepatitis B (HBV) virus and hepatitis C virus (HCV), ELPA has taken action and launched The 2016 Hep-CORE Report - Monitoring the implementation of hepatitis B and C policy recommendations in Europe.
2016 was a productive year in the fight against the hepatitis. World Health Organization introduced the first global health sector strategy on viral hepatitis and stakeholders in all regions of the world are beginning to rally around the global goal of eliminating viral hepatitis as a public health threat by 2030. However, despite the good news, the fact is that Europe has not been monitored as a whole since its inclusion in the WHO global hepatitis policy report of 2013, later followed up by a 2014 global community response report. In an attempt to shed the light on national policies on hepatitis B (HBV) virus and hepatitis C virus (HCV), ELPA has taken action and launched The 2016 Hep-CORE Report - Monitoring the implementation of hepatitis B and C policy recommendations in Europe.
Hep-CORE is a unique patient-led monitoring tool that engaged patient organizations in providing a full picture of the level of implementation viral hepatitis B and C policy recommendations in Europe and part of the Mediterranean Basin. Hep-CORE study was carried out by a research team led by Prof. Jeffrey V. Lazarus, from the Barcelona Institute of Global Health (ISGlobal), Hospital Clínic, University of Barcelona, Spain and CHIP, Rigshospitalet, a World Health Organization Collaborating Centre on HIV and Viral Hepatitis, University of Copenhagen, Denmark, on ELPA’s behalf. We would especially like to thank all patient organizations that participated in the study, all other stakeholders who provided necessary information and our sponsors, AbbVie Inc, Gilead Sciences Inc, and MSD, who supported the study by unrestricted grants.
Stark findings of the Hep-CORE study were internationally launched on December 20th during the international press conference in Berlin. Results presented by Prof. Jeffrey V. Lazarus of ISGlobal, University of Barcelona, showed some worrisome gaps in EU countries policies in coping with viral hepatitis. It shows that 52% of surveyed European (25) and Mediterranean Basin (2) countries lack national strategies to address viral hepatitis B or C, despite the WHO World Health Assembly resolution from May 2016, calling on all countries to have one. Also, only three countries have access to the new, highly effective medicines (direct acting antivirals) for hepatitis C without restrictions. These are just two sobering results from the 2016 Hep-CORE Report on the state of viral hepatitis policy and practice in Europe, released by ELPA. The report also showed that, despite an urgent need for broad monitoring and disease surveillance, 17 countries (63%) have no national hepatitis B virus (HBV) register and that 15 countries (56%) have no national hepatitis C virus (HCV) register. In addition, patient groups from 10 countries (37%) reported that there are no HCV testing or screening sites outside of hospitals for the general population in their countries. Even more alarming, patient groups from 12 of the countries (44%) reported that there are no such sites outside of hospitals that provide testing or screening services for high-risk populations.
It is completely unacceptable that hepatitis continues to be so poorly addressed in Europe. There are excellent prevention and treatment possibilities, well-thought-out strategies are available, and we have numerous international initiatives, especially from WHO. I expect this study to change the landscape of viral hepatitis policy surveillance on a regional and global level - said Tatjana Reic, President of ELPA during the report launch.
Our goal is to repeat Hep-CORE study on a regular basis in order to compare results between countries, and thus help the efforts in elimination of HBV and HCV.
- Harm Reduction and Viral Hepatitis C in European Prisons: Inadequate prevention measures in 25 European countries
- Patient monitoring of changes in the European policy response to viral hepatitis C treatment: Hep-CORE findings from 2016 to 2017
Lazarus JV. Hep-CORE study: Management of HBV and HCV infections throughout Europe [Invited oral presentation]. Central and Eastern European Meeting on Viral Hepatitis and Co-infection with HIV, Ljubljana, 27-28 Sept 2017.
Lazarus JV, Korenjak M, van Thiel I, Debu M, Ünalmis Duda H, Mishkovikj M, Frisch T. The ELPA Study Results: Monitoring European policy responses to viral hepatitis. Hepatitis C Community Summit Amsterdam, 19 April 2017.
Lazarus JV, José Willemse. Hep-CORE 2016: Monitoring the Dutch Policy Response to Viral Hepatitis [Invited oral presentation]. Hepatitis Amsterdam, 1 Nov 2016.
- Restrictions on access to direct-acting antivirals for people who inject drugs: The European Hep-CORE study and the role of patient groups in monitoring national HCV responses
- Harm reduction and viral hepatitis C in European prisons: a cross-sectional survey of 25 countries
- Hep-CORE: a cross-sectional study of the viral hepatitis policy environment reported by patient groups in 25 European countries in 2016 and 2017