The European Haemophilia Consortium (EHC) continues to closely monitor and evaluate the spread of novel coronavirus (COVID19). This is an update to the EHC’s January position statement, available here.
Situation in Europe
Transmission of COVID19 in Europe is dynamic and rapidly evolving. The EHC refers readers to the European Centre for Disease Prevention and Control (ECDC) and the World Health Organisation’s (WHO) Regional Office for Europefor latest updates and risk assessments. The risk associated with COVID19 transmission for people in the European Union, the European Economic Area and the United Kingdom is currently considered to be moderate to very high.
Personal precautionary steps
The situation in Europe is variable across countries and the EHC refers readers primarily to the risk assessment and mitigation plans of their national authorities.
In general, the following precautionary principles are advisable (more about that here):
- Conduct rigorous hand hygiene (wash with soap and water for 20 seconds);
- Observe strict cough etiquette (cough or sneeze into elbow, or if into a tissue, discard it immediately into a closed bin);
- Implement social distancing measures (avoid shaking hands and kissing, crowded transportation, and unnecessary mass gatherings);
- Consider proactive workplace and school/day care measures (such as teleworking, etc.) to reduce undue burdens on national healthcare systems;
- Exercise extra precautions for elderly or immune-compromised groups;
- If you are a bleeding disorder patient:
- Contact your Treatment Centre prior to any pre-existing appointment(s) to enquire whether to maintain, postpone, or ideally conduct online; and
- Avoid unnecessary travel.
EHC events
Due to the rapidly evolving situation in Europe and respecting principles 3-6 above, the EHC has cancelled its April events (Youth Leadership Workshop and World Haemophilia Day event), and is observing a spending embargo for its May and June events while it continues to monitor and assess the situation. In the meantime, alternative arrangements, such as virtual options, are being explored.
Safety, supply and availability of treatment products
The EHC is staying in close contact with manufacturers of bleeding disorder therapies regarding their risk assessment and mitigation plans, including on medicinal source materials, supply chains, and shipping and transportation of medicinal products across borders, in efforts to avoid disruption to bleeding disorder treatment regimens and access to life-saving therapies for our community. At the moment, the European Medicines Agency (EMA) does not foresee medicine shortages. For more information on potential impacts to medicinal supplies, please monitor the EMA page on this subject.
Next steps
The EHC will continue to monitor the evolving COVID19 situation and provide updated statements as relevant. If you have any questions about how COVID19 may impact you, please contact your healthcare provider, national patient organisation and/or national disease prevention and control authority.
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.
