In France, medical needs account for 10,000 blood donations a day. Most of the patients receiving these transfusions are over 65 years old.
Bristol Myers Squibb in France has partnered with the patient advocacy groups Connaître et Combattre les Myélodysplasies, l’Association Française de Lutte contre les Thalassémies and SOS Globi to develop a report about the French blood transfusion landscape, that includes recommendations for a better management of patient care in this area. More than ten stakeholders were involved in the development of this report. Currently, other patient organizations and healthcare professionals are invited to endorse the report and its recommendations. The next step will be to present this report to a larger audience in order to increase awareness around the topic and the shared recommendations. You find the report here (in French).
The European Reference Network EuroBloodNet and EURORDIS, representing patients with a rare disease, are working on establishing the European Network of Sickle Cell Disease (SCD) Patients Organizations. This umbrella network will consist of national and local organizations of SCD patients’ advocates, with the aim to ensure visibility at European level.
The European Hematology Association (EHA) has initiated a series of online workshops dedicated to guidelines for diagnosis and treatment of hematologic diseases. These workshops are aimed at disseminating good practices and knowledge with the help of patient cases, presentations and discussions with the guidelines’ authors and EHA experts. More information can be found here.
EuroBloodNet organises educational webinars for healthcare professionals on cutting-edge advances, highly specialized procedures and implementation of guidelines in the field of rare hematological diseases. In addition, patient-oriented webinars are also convened to increase awareness on specific rare hematological diseases among patients’ advocates and patient associations. You can find the overview here.
The Thalassaemia International Federation (TIF) released their Clinical Trials Update, a project which aims to provide an overview for patients and healthcare professionals on all clinical studies focusing on hemoglobin disorders thalassaemia and sickle cell disease. Please find the overview here.
Written by Bergit Korschan-Kuhle, “Out of Shape” is an autobiography illustrating life after an MDS diagnosis. The author describes how her life changed since her first diagnosis of MDS in 2006 until now, over a decade later. The printing of this book was supported by a donation from Bristol Myers Squibb, among others. The book is available in both English and German.
The World Health Organization (WHO) published a first indicative survey on the impact of COVID-19 on health systems based on 105 countries’ reports. Data collected from March to June 2020 illustrates that almost every country worldwide (90%) experienced disruption to its health services. Countries reported suspensions of many routine and elective services, while critical care–such as cancer screening and treatment–has seen high-risk interruptions in low-income countries. Urgent blood transfusions were disrupted in 23% of countries. Read the full analysis here.
Prof Simon J Stanworth and colleagues discuss the impact of the pandemic on the blood landscape in this study, including uncertain patterns of demand, reductions in donations and loss of staff. The study provides a synthesis of the published literature and guidance during times of shortages and proposes a range of strategies to maintain equitable access to blood for transfusion during the pandemic, in addition to new therapies. Read the full article here.
The European Directorate for the Quality of Medicines (EDQM) conference took place virtually from Tuesday 27th – Thursday 29th October 2020. The conference marked 10 years of successful collaboration between the EC and the EDQM/Council of Europe in the field of blood. Topics discussed included updates and discussions on:
You can find out more about the conference here.
The revision of the EU Blood Directive by the European commission is now confirmed. The Commission’s Work Programme 2021 includes a legislative proposal (expected in Q4 2021). The review will aim to “allow for more flexible alignment to scientific and technological developments”. The inception impact assessment is expected by the end of the year. You can find a link to the work programme annex document here (p16, point 37).
The EU-funded research project MDS-RIGHT (Providing the right care to the right patient with Myelodysplastic Syndrome at the right time) has developed guidelines for the treatment of MDS patients that include a consensus on indications and hemoglobulin target levels for red blood cell transfusions at a European level. The MDS Europe guidelines are available here.
In a stakeholder opinion piece published in Euractiv, Dr Androulla Eleftheriou, Dr Axel Hofmann and Prof Norbert Gattermann reflect on Europe’s blood supply, approaches to the use of blood in the care of patients with long-term chronic diseases; and how the COVID-19 pandemic has outlined some of the existing challenges in the blood ecosystem and medical care. They make a parallel with the ongoing evaluation of the EU Blood Directive and the ways in which EU policies could help strengthen healthcare systems and support blood sustainability in the long term, towards better patients’ outcomes. You can find the article here.
Amid the global pandemic, health care systems face tremendous challenges. In the article “Essential Role of Patient Blood Management in a Pandemic: A Call for Action” Dr Axel Hofmann and a multinational and diverse group of experts from across the globe issue a “Call to Action” explaining the importance of patient blood management (PBM) in the management of pandemics and urge all stakeholders and providers to implement the principles of patient blood management and its multi-professional and multimodality approaches.
The full journal article can be found here.
On June 14, countries around the celebrated World Blood Donor Day, under the topic “Safe Blood Saves Lives”. Blood is a lifesaving resource and in the context of the global COVID-19 pandemic blood donations are needed more than ever. Health Commissioner Stella Kyriakides thanked all blood and plasma donors and explained that as the world continues to fight against the virus, blood donors make an essential contribution to the healthcare systems. The European Blood Alliance (EBA) stressed the importance of increasing donation, raising public awareness and alerting public health authorities to invest in adequate resources and infrastructure to ensure universal access to safe blood. The World Health Organisation’s communication campaign with the motto “Give blood and make the world a healthier place”, focused on the contribution that donors make to improve the health of patients in need.
The COVID-19 crisis has outlined the need for more effective and coordinated European health actions between Member States. Against this background, the European Commission proposed the EU4health programme, a robust health programme for 2021-2027 with the main objective of ensuring better EU preparedness and response to major cross border health threats and sustainable health care systems across member states. The Programme’s proposed budget consists of €9.4 billion funded from the upcoming Multiannual Financial Framework (MFF) and the Recovery Instrument ‘’Next Generation EU”. This programme is an opportunity to reinforce healthcare systems and medical care to improve outcomes for patients in Europe, making progress in developing and implementing innovative approaches including in the blood transfusion landscape. It also aims to provide the means to strengthen medical education, research and clinical practices across Europe and the implementation of new care models.
The European Commission updated the Horizon 2020 work programme to allocate € 641 million to coronavirus research and innovation. Members of the European Parliament and Commissioner Mariya Gabriel, in charge of research and innovation, are calling for a strong research programme and a swift decision so that Horizon Europe can be launched in January 2021.
The new version (20th edition) of the Guide to preparation, use and quality assurance of blood components, (so called “Blood Guide”) was recently published by the European Directorate for the Quality of Medicines (EDQM), Council of Europe. It compiles all European standards for the preparation, use and quality control of blood components in order to ensure safety, efficiency and quality requirement in Europe and worldwide.
On the 1st of June 2020, The European Reference Network for Rare Blood Disorders (EuroBloodNet) launched The European Rare Blood Disorders Platform (ENROL), a new disease registry encompassing both already existing and new rare hematological disorders’ registries. The goal of the register is to combine all data and promote interoperability standards for EU’s rare disease platform patients’ registries. It will also map all data (demographics, survival rates, diagnosis methods, genetic information, main clinical manifestations and treatments) at the EU level in order to distinguish epidemiological figures and identify more easily trial cohorts for basic and clinical research. The online kick-off meeting took place on the 2nd of July.