Brussels, 16 April 2020
The European Haemophilia Consortium (EHC) and the European Association for Haemophilia and Allied Bleeding Disorders (EAHAD) have published today a joint statement on home delivery of treatment products and the management of the supply chain during the COVID-19 pandemic.
The European Haemophilia Consortium (EHC) and the European Association for Haemophilia and Allied Disorders (EAHAD) are committed to the representation and support of the rare bleeding disorders community, the improvement of patients’ lives, and the further development of scientific and medical research.
With COVID-19 deeply affecting Europe and its citizens, EHC and EAHAD consider essential that both patients and healthcare professionals remain well-informed during these uncertain times. The advancement and dissemination of knowledge can be our best weapon in the fight against this once-in-a-lifetime disaster. Therefore, EHC and EAHAD are adopting this joint statement on home delivery of treatment products, and supply chain management, during the COVID-19 pandemic.
Patients with rare bleeding disorders (RBD) require frequent injections of treatment products like clotting factor concentrates and/or other therapies. Many RBD patients are vulnerable populations (e.g. immune-compromised, etc.).
In ordinary times RBD patients would frequently visit their hospitals or pharmacies to collect their therapies. In COVID-19 times they should stay at home for safety reasons as per national guidelines.
In many – but not all – countries, home delivery of treatment products and home self-treatment by patients is a well-established standard, as per the European Principles of Haemophilia Care[1].
Under these circumstances, EHC and EAHAD urgently call on all governments to implement this Principle nationally.
The delivery of treatment products can be organised by treatment centres (hospitals) or delivery companies. Deliveries should ensure an adequate supply of treatment products to achieve safe patient care, continuity of treatment, and avoidance of death or severe complications requiring healthcare services.
Additionally, now more than ever, it is prudent to be prepared for potential interruptions in treatment product supply chains; therefore, the EHC and EAHAD jointly recommend implementation of the Council of Europe’s Haemophilia Principles 1[2] and 16[3] enabling patient representatives and clinicians to partner within their national systems on supply chain monitoring and management.
The EHC and EAHAD fully respect that each country’s healthcare system is organised differently. However, now more than ever, we must act in unity and share best practice to protect the lives of patients, national populations and support national healthcare systems.
References:
[1] http://eahad.org/european-principles-of-care/
[2] https://www.edqm.eu/sites/default/files/resolution_cm_res_2017_43_on_principles_concerning_haemophilia_therapies.pdf
[3] https://www.edqm.eu/sites/default/files/resolution_cm_res_2017_43_on_principles_concerning_haemophilia_therapies.pdf
About EHC
The European Haemophilia Consortium (EHC) is an international non-profit organisation that represents 47 national patients’ organisations of people with rare bleeding disorders from 27 Member States of the European Union (EU) and most of the Member States of the Council of Europe.
The EHC strives to represent people across Europe affected by rare bleeding disorders such as haemophilia, von Willebrand Disease (VWD) and other rare bleeding disorders. One of the key missions of the EHC is to ensure an adequate supply of – and access to – safe therapies.
About EAHAD
The European Association for Haemophilia and Allied Disorders (EAHAD) is a multidisciplinary association of healthcare professionals who provide care for individuals with haemophilia and other rare bleeding disorders. Its members include haematologists, internists, paediatricians, nurses, physiotherapists, laboratory scientists and researchers from across Europe.
Since its establishment in 2007, EAHAD has worked to improve the situation of people living with haemophilia and other bleeding disorders. One of the key missions of EAHAD is to ensure the provision of the highest quality of clinical care for people with bleeding disorders.
For more information about EAHAD and its activities visit www.eahad.org
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.
