Press release
The European Haemophilia Consortium releases film Living with hepatitis C and haemophilia in Europe for worldwide distribution
(Brussels, Belgium – June 24, 2019) The European Haemophilia Consortium (EHC) today announced the release of the film Living with hepatitis C and haemophilia in Europe from director Goran Kapetanović. In creating this film, the European Haemophilia Consortium calls on European governments to provide access to hepatitis C virus (HCV) treatment with direct-acting antivirals (DAAs) to all patients with haemophilia who were contaminated through government-provided treatment.
This initiative is part of EHC’s commitment to the many patient populations of the bleeding disorders community and a response and recording of tragic events in the bleeding disorders community. From the EHC 2016 survey on ‘Hepatitis C and bleeding disorders in Europe:’
- In the 1980s and 1990s thousands of people with bleeding disorders across the world were infected with HIV and hepatitis C virus through contaminated treatment products.
- The extent of the infection, as well as the needs of those living with HCV was never properly assessed and most patients were never properly compensated for this infection.
- It is estimated that some 15,000 people with bleeding disorders were infected with HCV in 30 countries in Europe.
- According to EUHASS, a European pharmacovigilance programme for rare bleeding disorders, liver disease and hepatocellular carcinoma is currently the primary cause of death within the haemophilia population.
- Direct-acting antivirals (DAAs) are medicines with a 95% success rate for curing HCV and are commercially available in most European countries.
In 2017, the Council of Europe published a resolution CM/Res(2017)43 on principles concerning haemophilia therapies, which recommends that “Treatment for hepatis C with direct-acting antiviral agents should be provided to all people with haemophilia on a high-priority basis.”
Viral hepatitis C is an inflammatory disease of the liver. Typically, infections have a symptomless cause during life and might take three to five decades to cause a significant liver impairment. However, effects are severe and dramatically impact quality of life. A scarred liver, called cirrhosis, is an organ that has been completely transformed following accumulation of scars and fibrous tissue and as a consequence, patients may have altered liver enzymes in the blood and issues in detoxication. Alarmingly, some of them may bleed in the guts because their scarred livers stop blood flow through the liver, making the venous vessels to inflate, and some of them may break and develop hemorrhage in the gut. In the end, some of them might develop primary liver cancer.
For these reasons, people affected with hepatitis C and rare bleeding disorders are at a higher risk of internal bleeds and this will result in higher use of costly replacement therapies, hospitalization and a sharp decrease in quality of life. As people with rare bleeding disorders were infected in two to three decades ago, this means that they are now at a much higher risk of developing hepatocellular carcinoma, which could require invasive, dramatic and costly medical procedures such as liver transplant.
“Hepatitis C is the biggest cause of mortality for people with haemophilia in many European countries,” says EHC President Brian O’Mahony. “Governments provided the treatment, which caused the hepatitis C. They now have a moral obligation to right this wrong and prioritize access to hepatitis C treatment for people with haemophilia.”
The film is part of the EHConversations Series and continuation of work in partnership with director Goran Kapetanović (My Aunt in Sarajevo (2016), Kiruna-Kigali (2012) and The War Game (2017)). Kapetanović has directed and produced Women and Bleeding Disorders: Untold Stories, Haemophilia Stories and Inhibitor Stories with EHC. No external funding contributed to the making of this film.
For additional commentary or information, please contact:
Amanda Bok, EHC CEO at [email protected] or +32 488 305 012.
Download this release in its entirety HERE
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
