EHC World Haemophilia Day 2016 celebrations: Focus on access to hepatitis C treatment, treatment disparities in Europe and appropriate healthcare services for an ageing haemophilia population.
On 20 April 2016, the European Haemophilia Consortium (EHC) held three events to mark World Haemophilia Day (WHD), an event traditionally observed on 17 April, which helps haemophilia communities worldwide to make their voice heard on pressing and current issues. This year’s EHC celebration was in line with the theme proposed by the World Federation of Hemophilia (WFH): ‘Treatment for all, the vision of all.’ In fact the EHC wished to highlight three major issues that need immediate addressing in Europe.
As we finally see effective cures for hepatitis C viral infection (HCV) being commercialised and reaching their first patients in Europe, the haemophilia community wishes to join its voice to those of other patients organisation and demand European government to implement an effective strategy to eradicate HCV in Europe. This is of particular importance to the haemophilia community as during the tragedy of the blood contamination that occured in the 1980s and early 1990s, an estimated 90 per cent of the haemophilia community was contaminated with HIV and HCV through their treatment and many of these patients did not receive compensation for this.
The second issue is the ongoing disparity in access to treatment, which sees the health and wellbeing of patients with haemophilia depending on the geographical lottery of where they are born and they reside. At the moment, there is still a 17-fold difference in terms of access to haemophilia treatment between countries with the best and worst access in Europe. The EHC has emphasised on many occasions that this situation is not acceptable and that European countries should and can do better for their patients.
Finally, this is the first time in history that haemophilia patients reach retirement and older age, which prompts a series of medical and social questions on how to care for this population in relation to haemophilia but also to co-infections and complications derived from these co-infections.
The events took place in Brussels and were attended by some 60 participants. Furthermore, the EHC was delighted that four Members of the European Parliament (MEPs) showed their support for this initiative. To this end, the EHC wishes to thank Dr Miroslav Mikolášik, Mrs Karin Kadenbach, Mr Heinz Becker and Mrs Sirpa Pietikäinen who spoke and chaired at these events.
A detailed report of the event will follow, in the meantime, it is possible to consult here below some key documents from the day.
For any further information on the EHC 2016 World Haemophilia Day celebration, please contact Laura Savini, EHC Communication and Public Policy Officer at laura.savini[at]ehc.eu.
Relevant documents:
Event on ‘HCV and Haemophilia’
- HCV: A call for action in Europe! by Mr Achim Kauzt, Leberhilfe Projekt
- Eradication of Hepatitis C in Haemophilia by Mr Brian O’Mahony, President EHC
- Current and upcoming HCV treatments: Challenges and opportunities by Prof Geoffrey Dusheiko, University College London
- HCV treatment in resource-limited countries by Mr Radoslaw Kaczmarek
- Eradicating HCV: The Portuguese experience by Dr Ricardo Baptista Leite
Round Table of Stakeholders on Ageing and Haemophilia
- Treatment protocols and organisation of care by Dr Evelien Mauser-Bunschoten, Utrecht University Medical Centre
- Treatment of cardiac problems in older people with haemophilia by Dr Maria Elisa Mancuso, University of Milan
- Physiotherapy for older people with haemophilia by Mr Piet de Kleijn, Utrecht University Medical Centre
- Personal experience and NMO perspective by Mr Zygmunt Gruszka, Swedish NMO
- Personal experience and NMO perspective by Mr Cees Smit, Haemophilia in the Netherlands 6
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.
