Absent Presences · an ethnographic study of the uncounted lives of people affected by leprosy in Latin America

Absent Presences: an ethnographic study of the uncounted lives of people affected by leprosy in Latin America

This MSC Action is titled “Absent Presences: an ethnographic study of the uncounted lives of people affected by leprosy in Latin America”. Its objectives were to explore: (1) the last decades’ official campaigns of the World Health Organization (WHO) to eliminate leprosy as a public health problem, (2) the impact of such campaigns on the lives of people already affected by this disease in Brazil, and (3) what has been rendered visible and invisible by the epidemiological data produced in this process. Since the introduction of Multidrug Therapy (MDT) in the 1980s, the number of cases of leprosy registered globally has decreased from over 5 million to about 200,000 cases. In 2000, WHO announced the achievement of the global elimination of leprosy as a public health problem (defined by a prevalence rate of less than one case per 10,000 persons). However, the exam of such an extraordinary decrease in cases is relevant for society because it was not purely due to a drop in transmission rates, but rather to an increase in under- and misdiagnosis—and, more importantly, due to a change in the way the number of cases was to be measured. As this MSC Action was able to outline, this process has given rise to new challenges such as the increase of foreign-born cases in the so-called Global North and the decrease in investment in the field of leprosy control. It called attention to the difficulties of getting local governments to invest in fresh research projects, campaigns of active surveillance, and relevant infrastructures in a context in which it is taken for granted that leprosy has been already eliminated as a global health problem. Drawing on literature from Science and Technology Studies, Medical Anthropology, and critical studies of global health, on the one hand, this project examined the production of statistical data, central to the evidence-making processes of the global epidemiological situation of leprosy. The project was able to demonstrate how the recommended measuring schemes for leprosy elimination created an ironic situation: while leprosy is perceived and often portrayed as a disease that no longer exists (a disease that was eliminated), many scientific, political, and medical questions regarding it remain unanswered and thousands of people continue getting diagnosed every year. On the other hand, the project focused on the past and present experiences of people affected by leprosy in Brazil. Based on interviews and ethnographic observations, the project was able to explore how the lives of these individuals have been affected by local health policies that came into place as recommended by the WHO. More specifically, it demonstrated how the declaration of the elimination of leprosy has been contributing to overlooking the long-term needs of patients in the so-called post-cure period.

Data: CORDIS, © European Union