Kedrion Biopharma and Swedish company Sobi have signed a Memorandum of Understanding with the European Hemophilia Consortium in support of the EHC’s PARTNERS programme (Procurement of Affordable Replacement Therapies – Network of European Relevant Stakeholders). Through this agreement, the two companies commit to joining an innovative and sustainable procurement plan, aimed at improving access to hemophilia replacement therapies in those European countries that currently do not meet the recommended minimum treatment levels of 4 IU factor VIII replacement therapy per capita, minimum treatment levels of 0.5 IU factor IX replacement therapy per capita and do not provide prophylactic treatment for all children with severe hemophilia. With the implementation of PARTNERS and the involvement of key stakeholders, EHC estimates that over 5000 people with hemophilia in 14 countries will have increased access to vital treatment and a substantial improvement in quality of life.
As EHC President Brian O’Mahony 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 in the 1970’s and this is unacceptable. We believe that, with this programme, existing national hemophilia budgets can lead to increased quantities of treatment purchased through better tender systems. This ambitious project aims to provide an increased access to treatment but also to include patients and health care professionals in the decision-making process of the organization of hemophilia care in any given countries. We are also very thankful – Brian O’Mahony concluded – for the support of all of our partners, without which this project would not become a reality.”
“Nowadays, we know very well how a patient needs to be treated”, commented Lorenzo Melani, Hemophilia Marketing Manager at Kedrion Biopharma. “Now that we know the goal, we have to speed up the process. We strongly believe that a breakthrough programme, such as PARTNERS, will help patients in a number of countries where treatment levels are not optimal.”
In 2017, the EHC visited several of the eligible 14 countries for a meeting with representatives of their Ministries of Health, Insurance Funds and hemophilia patient organizations to discuss interest in the programme, and an implementation schedule is now being elaborated on.
PARTNERS has received endorsement from the European Patients’ Forum and EURORDIS – Rare Diseases Europe, as well as from many Members of the European Parliament (MEPs). To solidify this support on both a European and national level, the EHC officially launched the programme on November 28th in the European Parliament, in the course of an institutional meeting that Kedrion attended as well.
By joining PARTNERS, Kedrion Biopharma pursues 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 company 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. And it 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).
Learn more about PARTNERS at: www.ehc.eu/partners/