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:

Haemophilia Care in Europe

Every three years since 2009, the European Haemophilia Consortium (EHC) has conducted surveys amongst its 45 national haemophilia member organisations to determine the extent to which the European Principles of Haemophilia Care and the recommendations from the European Directorate for the Quality of Medicines and Healthcare (EDQM), part of the Council of Europe, are met in countries across Europe.

The purpose of these surveys is to ascertain information about the organization of haemophilia care and treatment availability at national levels. Furthermore, the survey provides a basis from which the EHC is able to monitor the unmet need 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 mentioned above.

The latest survey was sent out in 2015 and gathered information on factor usage for the calendar year of 2014. The questionnaire consisted of 39 questions, of which 30 questions examined to extent to which the European Principles of Haemophilia Care and the EDQM recommendations reflect the reality of haemophilia treatment and care in the countries; four questions examined cross-border access to haemophilia care; five questions examined ageing and haemophilia. The countries that responded included 23 EU member states and 14 non-EU countries.

The survey was published in the June 2017 issue of the scientific journal Haemophilia. To access the article and results, please click here.

Mapped results by country from the previous 2012 survey can be accessed here. The published article in Haemophilia Journal of  the survey can be viewed here.

Results and published article (Haemophilia Journal) from the first survey done in 2009 can be viewed here. The mapping out of results by country can be accessed 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.

For detailed article of the release of the results, 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.