The European Haemophilia Consortium (EHC) has developed a new video to mark the Council of Europe Resolution on principles concerning haemophilia therapies issued on 15 April 2015, which promotes the following six principles:
- To optimise the organisation of haemophilia care, a system should be established in each member State to allow the implementation of a multidisciplinary approach for the treatment and care of patients (for example by setting up an advisory body including representatives of the relevant clinicians, national haemophilia bodies, patients’ organisations, the health ministry, the paying authority, blood establishments and the regulatory authorities or by setting up centres of excellence);
- In each member State, the coagulation factor VIII utilisation level should be at least 3 International Units (IU) per capita;
- Decisions on whether to use a new or an alternative product should be based on evidence of safety and effectiveness and not solely on cost;
- The evidence of the effectiveness of different treatment regimes should be strengthened. Prophylaxis is currently recognised as the optimum therapy for children with severe haemophilia. Ongoing prophylaxis for adults should be provided, when required based on a clinical decision by the clinician in consultation with the patient;
- Prophylactic treatment with bypassing agents should be offered to haemophiliac children who have developed inhibitors and in whom immune tolerance induction therapy has failed or was unsuitable;
- Single coagulation factor concentrates should be used as therapy wherever possible in patients with rare bleeding disorders.
The video can now be viewed here below and on the EHC YouTube Channel.
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.
