EHC World Haemophilia Day celebrations: Presenting the recommendations from the fourth Wildbad Kreuth initiative on optimal treatment of haemophilia in Europe.

On 19 April 2017, the European Haemophilia Consortium (EHC) held an event at the European Directorate for the Quality of Medicines and Healthcare (EDQM), a directorate part of the Council of Europe, in Strasbourg, France to mark World Haemophilia Day. This is an international observance traditionally held on 17 April to raise awareness about issues in the haemophilia and rare bleeding disorders community.

This year the EHC decided to commemorate the day with an event presenting the recommendations on haemophilia care developed during the last Wildbad Kreuth consensus intiative held in May 2016. This is an initiative organised by the University of Munich, the Rudolf Marx Foundation and the EDQM, which brings together experts from across Europe including regulators, scientists, clinicians, representatives from patient organisations and representatives from the pharmaceutical industry to discuss best practices for the treatment of haemophilia and other rare bleeding disorderes. These recommendations are significant for the haemophilia community as the set developed for the third Wildbad Kreuth initiative was endorsed as a resolution (a non-binding legal instrument) by the health ministers of countries taking part in the European pharmacopoeia convention. It is hoped that the newest set of recommendations will also be endorsed by European health ministers to promote equal standards of haemophilia care across Europe.

Topics covered by the last set of recommendations include, amongst others, best practices for the treatment of people with inhibitors, access to hepatitis C treatment, minimum levels of coagulation factor consumption and the certification of haemophilia treatment centres. During the event, a range of speakers representing patients and clinicians gave compelling presentations on the need for rapid endorsement and implementation of these recommendations. In fact, although, Europe may often be seen as an homogeneous region, there are still many disparities in terms of access to- and standards of haemophilia treatment and care, which are detrimental to patients.

The event was also the opportunity for the EHC to introduce its newest project ‘Procurement  of  Affordable  Replacement Therapies – Network of European Relevant Stakeholders (PARTNERS).’ This project seeks to ensure sustainable  access  to  treatment  in  selected  European  countries that do not meet the minimum standards of haemophilia care, as outlined by the 2016 consensus recommendations. These countries, where level of  factor  VIII  and  IX  consumption  is  below  4 international units (IU)/capita  and  .5IU/capita,  respectively,  provide  little  or  no  prophylactic treatment for children and adults with severe haemophilia. By taking part in this project, the selected  countries,  together  with other partners,  such  as  healthcare  professionals,  patient organisations and product manufacturers, agree to the following:

  • To use national-level tender or procurement processes for coagulation factor concentrates,
  • To formally include clinicians and EHC NMO representatives on a long-term basis  in the tender/procurement system;
  • To award contracts to the winning bid(s) of at least a three-year duration; and
  • To increase factor  purchase  without  decreasing  the  national  haemophilia  budget  and to agree  in  principle  to  at  least  double  the  current national  purchased  amount  of  factor replacement  therapies  over  the duration  of  contracts  awarded  or  until  the  minimum  IU/per capita set by the Kreuth IV consensus recommendations is met.

One  of  the  most  important  aspects,  without  which  this  programme  would  not  be  possible,  is  the involvement    of    pharmaceutical    companies.    During    the    World    Haemophilia    Day    event, three pharmaceutical  companies – Kedrion Biopharma,  Pfizer  and  Sobi – signed  a Consensus  Agreement  to confirm their intent to support the development of the PARTNERS programme. In the long-term the PARTNERS project also aims to promote best practices for the treatment of haemophilia care.

Additional pictures of the event can be found on the EHC Facebook page.

Relevant documents:

Presentations from the event: