Supporting patients with haemophilia in a world of crises: new role for the WFH and its partners

Authors: Pierce, GF; Haffar, A; Baumann, A; Hermans, C

Affiliations: World Federation of Haemophilia, Montreal, Canada. Division of Haematology, Haemostasis and Thrombosis Unit, Saint-Luc University Hospital, Université catholique de Louvain (UCLouvain), Brussels, Belgium.

Publication: Haemophilia: 2022; 28. 521–522

Abstract: The last few decades have been marked by major advances for people with haemophilia. They concern the understanding of the mechanisms, diagnosis, treatment and care of clotting factor VIII and IX deficiencies and other inherited bleeding disorders.1 These advances have recently culminated in the development of new treatments2,3 and especially in the demonstration of the possibility of curing both haemophilia A and B by gene therapy in the future.4 Apart from successes, these decades will also be remembered by failures and disasters, such as the infection and death of thousands of patients by factor concentrates containing HCV or HIV. In 2022, while promising therapeutic innovations are multiplying, many challenges remain, including identifying nearly 80% of patients with undiagnosed hereditary haemorrhagic diseases and guaranteeing them access to treatment and specialized care.5 Globally and sustainably, the goal is to guarantee access to diagnosis, treatment and quality care for all patients worldwide. However, these ambitious objectives can only be achieved and preserved in a world and an environment that are stable, supportive, altruistic, peaceful, and fuelled by the quest for success and collective development and not by the ambition of domination and submission.