Haemophilia in the developing world: successes, frustrations and opportunities M. TEZANOS PINTO* and Z. ORTIZ   *Instituto de Hematologia, Academia Nacional de Medicina, Buenos Aires, Argentina; and  Centro de Investigaciones Epidemiolo ´ gicas, Academia Nacional de Medicina, Buenos Aires, Argentina Summary. There is a need to bridge key gaps between high- and low-income countries and indi- viduals; between health policy and clinical practice; and between producers and users of healthcare technology and scientific evidence. The objective of this report was to perform a diagnosis of the situation in the developing world through a survey. This survey was conducted to gather specific infor- mation on various aspects related to haemophilia. Countries were chosen by their comparability in infant and adult mortality rates according to the regionalization proposed by the World Health Organization. These indicators are very sensitive to socioeconomic conditions, and have been widely used to study health inequalities. All regions, except Africa and the East Mediterranean, were represen- ted. Africa was excluded because its indicators were not comparable. The East Mediterranean was not represented because of difficulties in contacting investigators. Twenty-one country representatives were contacted, and 11 answered the questionnaire. Successes obtained by developing countries are based more on the skills and creativity of the local professionals than on the availability of state-of- the-art technology. Frustrations were related to disease underregistration and the limited availability of treatment products. Haemophilia care in the developing world is not as fair as we would like it to be. Governments do not always cover treatment costs, and a very small percentage of the national health budgets is alotted to haemophilia care. The role of the World Federation of Hemophilia was considered crucial by all the investigators surveyed. Training programmes and supply of factor concen- trates were the main contributions identified by the respondents. Keywords: developing world, frustrations, haemo- philia care, inequalities, successes survey Introduction Spectacular progress has been made over the past quarter-century in the diagnosis, treatment, rehabil- itation, social integration and education of people with haemophilia. We are all aware of the commit- ment and efforts undertaken by numerous research- ers to develop a gene therapy aimed at curing the disease, or, at least, at changing the phenotype of patients with severe haemophilia to moderate or mild. Regardless of the fact that our generation may or may not see these developments come true, these are unarguably the goals. However, while we observe these developments with great interest, we also see how the social dimension of globalization retreats. According to the latest estimates of the International Labour Organization, over the past decade there has been an increase in the declared unemployment worldwide and an increase in poverty within the developing world. Unemployment rates have increased since 1990 in Latin America, the Caribbean and southeast Asia, and since 1995 in East Asia [1] (Fig. 1). In Latin America and the Caribbean, 15% of the population lives in extreme poverty (income of <US$1 per day, according to the United Nations indicator) [2]. In terms of growth, only 16 developing nations grew more than 3% per year between 1985 and 2000. In contrast, 55 developing countries grew <2% yearly, and of these, 23 had negative growth. Socioeconomic situation is a determining factor in health. Evidence shows that the relationship between poverty and health is clear, direct and unquestion- able [3]. Whenever we examine rates related to mortality, morbidity or self-perception of health, the Correspondence: Instituto de Hematologia, Academia Nacional de Medicina, Pacheco de Melo 3081, CP 1425, Buenos Aires, Argentina. Tel.: + 54 11 4805 6890; fax: + 54 11 4806 6638; e-mail: mtezanos@hematologia.anm.edu.ar Haemophilia (2004), 10, (Suppl. 4), 14–19 14 Ó 2004 Blackwell Publishing Ltd