Semin Thromb Hemost 2005; 31: 561-568 DOI: 10.1055/s-2005-922228
Copyright © 2005 by Thieme Medical Publishers, Inc., 333 Seventh Avenue, New York, NY 10001, USA.
Expanding Hemophilia Care in Developing Countries
Brian O'Mahony1, Claudia Black2
1 Irish Haemophilia Society, Dublin Ireland 2 Programs Director, World Federation of Hemophilia, Montréal, Québec, Canada

ABSTRACT

The World Federation of Haemophilia (WFH) estimates that worldwide, approximately 70% of patients with hemophilia are underdiagnosed and untreated. Most live in developing countries. Although in developed countries the life expectancy of hemophiliacs is close to that of healthy persons, this is not the case in developing countries. Great disparity also exists in the treatment of hemophiliacs, especially when this relates to available factor concentrates. There are many reasons for the inadequate care of hemophilic patients: the perception of rarity of the disease; lack of laboratory facilities to diagnose the disorder; lack of understanding of the disorder by patients, their relatives, and even healthcare providers; poorly developed blood bank facilities; and lack of adequate factor supply are just some examples. The WFH attempts to address many of these issues by establishing hemophilia care programs and by educating and training healthcare practitioners so that a healthcare team can be organized that attempts to ameliorate these problems and provides treatment options. In the last few years, a considerable number of developing countries have been organized to deliver at least a minimum of care, and attempts have been made to obtain support from appropriate governmental sources.

KEYWORDS

Hemophilia - World Federation of Haemophilia - educational programs - treatment centers - outreach programs