Current scenarios in Hemophilia care and the key role of Factor VIII; putting patients at the center of the therapeutic pathway; the global challenge of access to treatment: these were the themes at the heart of the Kedrion-organized congress entitled "Hemophilia Care: Building Confidence" (“Emofilia. La certezza della cura”), a large medical-scientific event held in Trieste on June 27th and 28th.
This initiative brought together the field’s leading clinical experts but also donor associations, health institutions representatives and the industry, patient associations and patients themselves.
The broad-ranging program confirmed Kedrion's commitment to Hemophilia, personalized care and access to treatment: very real and pivotal challenges affecting every therapeutic area in which the company operates, the ultimate goal of which is offering those affected by rare diseases the possibility of a better life.
Hemophilia therapy and the future of plasma derivatives
This congress provided the opportunity to discuss current scenarios in Hemophilia care also in light of the new products developed in recent years. Professor Elena Santagostino, Scientific Director, opened the congress by stating that “it is of great relevance, and very current, to discuss and understand how Factor VIII can be used in the light of the newer therapies that could be alternative to it, but – more importantly – be associated or combined with it”, going on to add that “for certain types of patients, the use of Factor VIII has and will continue to have advantages insofar as it offers a more modular therapy compared to recently developed and lesser known strategies.”
The afternoon session of the first day was broader in scope: starting from the topic of Italian self-sufficiency it explored the future of plasma-derived pharmaceutical products, hosting speeches by AVIS National President Gianpietro Briola and the General Director of the National Blood Center Giancarlo Liumbruno.
An integrated approach to Hemophilia care
The congress focused on therapies but especially on patients, who are becoming increasingly central to disease management and to the doctor/patient relationship. The debate then moved to the personalization of care, introducing the issue of how to build treatment pathways that take the needs, expectations and lifestyle of the individual patient into account, and thereby orientate and contribute directly to tailoring prophylaxis.
Kedrion is deeply convinced that giving patients a different role is the real challenge for the future, and will be putting every effort into achieving this goal, supporting initiatives and projects that aim to improve the healthcare relationship between doctors and patients.
The global challenge of access to care
Giancarlo Castaman, Scientific Director of the congress together with Elena Santagostino, moderated the last session, in which access to treatment for Hemophilia and for the diseases of the other therapeutic areas in which Kedrion operates was discussed. The discussion shifted from Italy to Europe and then to the rest of the world with speeches by Amanda Bok, CEO of the European Haemophilia Consortium (EHC) – who illustrated the PARTNERS project, a Kedrion supported initiative aimed at improving access to treatment for coagulation disorders – and by Chilean physician Marcela Contreras, who outlined the initiatives aimed at the universal eradication of Hemolytic Disease of the Fetus and Newborn (HDFN).
NGO Emergency founder Gino Strada’s interview, which focused on the subject of inequalities and health emergencies, was live streamed. In the work carried out by Emergency, the need to expand the right to care throughout the world goes hand in hand with the commitment to improve healthcare infrastructures, medical and scientific education, and the availability of medicines, especially in conflict zones. Thanks to its involvement in ethical and transparent projects in aid of disadvantaged countries, Kedrion is at the forefront of this commitment insofar as rare diseases are concerned. These projects aim to ensure broader and fairer access to plasma-derived therapies also in those areas of the world in which therapeutic needs have yet to be met. “To date, 70% of hemophiliacs worldwide do not have full access to treatment, while nearly 400,000 cases of HDFN are recorded each year” concluded Professor Alessandro Gringeri, Kedrion Chief Medical and R&D Officer. “This means there is a lot of work that still needs to be done to increase access, and Kedrion is proud to be partnering national institutions, such as the National Blood Center (CNS) and the Italian Regions, and prestigious international academic and not-for-profit organizations in the achievement of this objective.”