Haemophilia in the developing world: successes,frustrations and opportunities

Summary. There is a need to bridge key gaps between high‐ and low‐income countries and individuals; 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 information 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 represented. 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 concentrates were the main contributions identified by the respondents.