Gaining recognition of hemophilia and other related bleeding disorders from national health authorities can be challenging.
Often national and regional authorities argue that there are not enough resources to provide proper care and treatment for people with bleeding disorders. The work of our World Federation of Hemophilia (WFH) national member organizations (NMOs) in creating this awareness and in convincing governments to invest is pivotal to creating change. Some NMOs have gone far to create changes in policies and to create awareness for these bodies.
On the seventeenth of March 2015, the Venezuelan Association for Hemophilia (AVH) presented to the Inter-American Commission on Human Rights (IACHR) a compelling case that the people with hemophilia and other bleeding disorders need to have regular access and uninterrupted treatment of clotting factor concentrates which are deemed essential in the list of the World Health Organization medications. The IACHR is a principal and autonomous organ of the Organization of American States (“OAS”) whose mission is to promote and protect human rights in the American hemisphere.
Ms. Antonia Luque, coordinator of the AVH, states, “It causes us great concern the suspension of prophylactic treatment. Since 2002, we had treatment for all patients and now only it is only available for emergencies. We continue to lobby health authorities within the country and outside.”