To mark World Hemophilia Day 2017, the European Hemophilia Consortium (EHC, an umbrella organization that gathers 45 national patient organizations in the field of rare bleeding disorders) organized a meeting in Strasbourg, which was attended by healthcare professionals, patients associations, regulatory authorities and pharmaceutical industry representatives.
In the course of the event – which took place at the European Directorate for the Quality of Medicines and Healthcare (EDQM, part of the Council of Europe) – EHC officially presented its “PARTNERS – The Procurement of Affordable Replacement Therapies – Network of European Relevant Stakeholders” project, the aim of which is to ensure sustainable access to treatment in selected European countries that do not meet the minimum standards of hemophilia care.
As EHC President Brian O’Mahony has stated: “Today in Europe we still see countries where people affected by hemophilia have the same level of joint damage and poor quality of life as we saw in patients before the advent of modern coagulation factor concentrates and this is unacceptable. We believe that hemophilia budgets can be put to better use and that increased quantities of treatment can be purchased through better tender systems.”
Kedrion has undersigned the PARTNERS project alongside a small number of pharmaceutical multinational companies. “By signing this agreement – Ferdinando Borgese, Global Marketing Director, explained – Kedrion is committing to the EHC project, whilst also pursuing its involvement with patient organizations worldwide, the ultimate goal of which is to improve the quality of life of all those affected by coagulation disorders.”
The PARTNERS project will act in those countries in which the minimum standards of care, outlined by the 2016 recommendations – factor VIII below 4 IU per capita, and factor IX below 0.5 IU per capita – are not met, and in which hemophilia prophylaxis appears inadequate compared to national product consumption volumes.
Kedrion already supports the WISH international cooperation program, run by the Centro Nazionale Sangue (the Italian National Blood Center), the Italian Regions and the World Federation of Hemophilia, which works to reduce global differences in the access to coagulation factor concentrates. The company is also a member of the CURhE Consortium for the eradication of the Hemolytic Disease of the Fetus and New-Born (HDFN), a global alliance of industry and academic partners led the prestigious Stanford University (California).
This with the EHC is therefore the third agreement of the kind into which Kedrion enters. A long-standing supporter of the Consortium’s activities, in this specific case Kedrion is agreeing to back further EHC initiatives the ethical content of which is to ensure minimum per capita product consumption in Europe, all the while improving access to therapies and encouraging national governments to increase the quality of care provided.
Kedrion’s commitment to R&D, especially in the field of orphan drugs; its dedication to producing plasma-derived medicines; its long experience in the global distribution of medicinal products; its thorough attention to the quality and safety of every single product and process, have one single objective: meeting patients’ needs. “We are dealing with rare and, in some cases, extremely rare diseases, and we make our therapies available to people who, in the majority of cases, cannot avoid taking them”, Ferdinando Borgese concluded. “We are committed to doing all we can to make our products available to patients in need of them the world over, to fulfil therapeutic needs that are still unmet, and to extend access to plasma-derived therapies also in those countries in which it is not always fully ensured.”
For more information on the PARTNERS project, please visit www.ehc.eu/partners/.
