The European Haemophilia Consortium (EHC) held an event in Dublin, Ireland, on 16 April to mark the 2015 World Haemophilia Day. The event was held one day prior the official World Haemophilia Day (17 April) so as not to interfere with the national celebrations of EHC members.
During this event, the results of the EHC survey of 38 countries on Tenders and Procurement were unveiled. Organised in 2014, the survey looks at ways in which coagulation factor concentrates are purchased across Europe and to what extent patients and healthcare professionals are involved in the purchasing process, if at all.
Access to treatment for haemophilia, von Willebrand disease and other rare bleeding disorders remains a major problem faced by many patients in Europe. It is estimated that economic barriers are primarily responsible for the lack of treatment. This is particularly exacerbated in countries that continue to face the effects of the financial crisis.
Mr Brian O’Mahony, President of the EHC, noted that the involvement of haemophilia clinicians and patient organisation representatives, which has been promoted strongly by the EHC, clearly leads to a more successful outcome in which the haemophilia patient community can access the safest and most efficacious products in the knowledge that their concerns and priorities are fully included in the decision-making process.
An additional striking finding from the survey was that, contrary to pre-conceived beliefs, the formal and official involvement of patient organisations and haemophilia clinicians in the procurement process also lowers prices for coagulation factor concentrates in a statistically significant way. In those situations, ideally the budget that is saved by using an inclusive tender process should be utilised for comprehensive care services for haemophilia. This is not always the case but should be. Dr Barry White, National Haemophilia Director in Ireland noted that in haemophilia, medicinal products dominate cost rather than healthcare services, but that “a very small percentage of saved treatment budget can make a meaningful impact on services.”
Mrs Tatjana Markovic, Vice-President of the Serbian Haemophilia Society, outlined the multiple other benefits that the formal involvement of patient representatives on the Tender Committee has had in Serbia. These include an increase in the consumption of coagulation factor concentrates from 0.75 International Units (IU) per capita in 2004 to 2.04 IU per capita in 2014 without an increase in the overall budget, and ensuring patient access to treatment in emergency situations.
Other speakers included Mr Charles Hay from Manchester Royal Infirmary who discussed the UK national tenders and Mrs Anne-Marie Curran from A and L Goodbody who explained the changes of the new EU Procurement Directive for Public Services, which will have to be transposed into national laws by 17 April 2016. The new procurement will allow more flexibility in tender processes and encourage innovation.
The results of the survey have been accepted and published in the scientific journal Haemophilia (May 2015). Publication can be viewed 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.
