The European Haemophilia Consortium (EHC) collects data from its National Member Organisations (NMO) annually on a particular aspect of patients’ access to treatment and care in Europe and publishes the results widely, including in peer-reviewed scientific journals, EHC monographs and other communication tools for use by its members and other stakeholders at national and European levels.
The EHC has collected and published data on:
Europe is a disparate continent with a wide range of economic conditions and health systems in individual countries. In 2008, the European principles of haemophilia care were drafted by an interdisciplinary group of haemophilia physicians with input from key patient opinion leaders and endorsed by the EHC and the European Association for Haemophilia and Allied Disorders (EAHAD).
In 2009, the EHC began carrying out the ‘Haemophilia Care in Europe’ surveys in order to determine the extent to which haemophilia care in across the continent of Europe compared with the above principles. This provides a basis from which the EHC is able to monitor the unmet needs and stability of care/treatment access in the individual member countries. The collected data has been inﬂuential in providing evidence for policy recommendations at a European level, such as the EDQM recommendations.
A total of 19 countries responded to the first survey. This survey identified significant gaps in terms of the provision of care in haemophilia within each country. The survey was repeated in 2012 with 35 countries responding and again in 2015 with 37 countries. Over these six years, with the significant increase in countries reporting back, a clearer picture of these disparities emerged. Whilst there have been increases in the availability of clotting factor concentrates (CFC), there are still 13 countries who remain below the EDQM minimum recommendations for CFC, with further 5 countries unable to provide data on CFC use due to lack of access to data. The picture developing shows that countries with a highly organised system for delivering haemophilia care is capable of producing a level of care beyond their economic constraints. These are countries with good registries that record all people with haemophilia (mild, moderate, severe), have patient and clinician involvement in all aspects of care including decision-making on haemophilia care and choosing haemophilia treatment products. These countries also include a well-defined network of comprehensive care centres and haemophilia treatment centres to treat patients effectively and optimise the use of CFC’s to maximise the benefits for patients.
2015 Haemophilia Care in Europe survey To access and/or download a heat map of the 2015 results, country by country, please click here.
In June 2017, the survey was published in the scientific journal Haemophilia. To access the article and results, please click here.
2012 Haemophilia Care in Europe survey
To access and/or download a heat map of the 2012 results, country by country, please click here.
In April 2013, the survey was published in the scientific journal Haemophilia. To access the article and results, please click here.
2009 Haemophilia Care in Europe survey
To access and/or download a heat map of the 2009 results, country by country, please click here.
In January 2011, the survey was published in the scientific journal Haemophilia. To access the article and results, please click here.
Tenders and Procurement Survey
The procurement of coagulation factor concentrates (CFCs) – both recombinant and plasma derived – is an exceptionally important process. There is a real danger that, in an attempt to purchase CFCs in the most cost eﬀective manner, decisions are made by health authorities and individuals with no detailed knowledge of the products and no understanding of the haemophilia community history. In this situation, they will often purchase CFCs purely based on lowest cost with no consideration of safety, eﬃcacy or quality criteria.
It is vital that expert clinicians who routinely treat people with haemophilia and appropriately trained haemophilia patient organisation leaders are formally involved in the procurement or tender process for CFCs in each European country. The EHC believes this involvement will not only lead to the purchase of safer and more eﬃcacious products, but to a more cost eﬀective process as well.
Access to treatment for haemophilia, vWD 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 lack of treatment.
For this reason, in 2014 the EHC developed and sent out a survey that 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.
For results and published article (Haemophilia Journal), please click here.
The results were unveiled at the EHC World Haemophilia Day event held in Dublin, Ireland on April 16th, 2015. For a detailed re-account of the event, please click here.
Funding of Haemophilia Societies and Associations
The survey “An Evaluation of the Current Methodology for Funding of National Haemophilia Patient Organisations” was prepared, carried out and analysed from February-October 2014 and took into account the data of the financial year 2013 and earlier, provided by the respondents. The aim of the survey was to ascertain and identify the current sources of funding for haemophilia National Member Organisations (NMOs) in Europe; to evaluate the extent to which organisations had policies regulating funding received from pharmaceutical industry, where such funding was received, as well as to examine results and recommend best practice for the future.
Method, results and evaluation can be accessed here.