Haemophilia in the developing countries: the Iranian experience

INTRODUCTION Management of haemophilia and inherited bleeding disorders is a major challenge especially in developing countries, because of a shortage or absence of products, the cost and the infrastructural health problems. Development of local expertise which results in an improved outlook and reduction in mortality and morbidity in these countries can be helpful for advocators in other developing countries. However, very little information on demography and organizational models for haemophilia care in developing countries are available in the literature. Our aim is a comprehensive report of haemophilia status and its management in Iran. MATERIAL AND METHODS THE MANAGEMENT CENTER OF TRANSPLANTATION AND SPECIAL DISEASES (MCTSD) OF THE MINISTRY OF HEALTH OF IRAN DECIDED TO CARRY OUT A COMPLETE REVIEW AND COMPILATION OF ALL OF THE PUBLISHED OR AVAILABLE DATA ABOUT PATIENTS WITH HAEMOPHILIA (PWH) IN IRAN: their health status, their management planning, organizations, treatment products, facilities and care problems during 2007. RESULTS 6496 patients with congenital bleeding disorders were registered. Most of them had haemophilia A and B and von Willebrand disease (vWD). However, rare bleeding disorders are seen more than expected. Inhibitor development is 14-28%. There are different data about virological status of PWH. Factor products and facilities are fairly available with more than 1.5 units per capita of inhabitant factor consumption. CONCLUSIONS A national formulary based on facilities of the country should be considered and followed by collaboration among the Ministry Of Health, universities and non-governmental organizations.