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

ended

This research project focuses on the absent presences of people affected by leprosy in the World Health Organization’s (WHO) making of a leprosy-free world. 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). Since the introduction of multidrug therapy (MDT) in the 1980s, the number of cases registered globally has decreased from over 5 million to about 200,000 cases. However, many scholars have suggested that such an extraordinary decrease is not due to a drop in transmission rates, but rather to an increase in misdiagnosed cases. They argue that the announcement of the global elimination of leprosy has caused the closing down of active surveillance campaigns as well as a progressive loss of expertise in diagnosis and treatment of leprosy. According to some estimates, between the years 2000 and 2020 as many as 4 million cases will be overlooked worldwide. This process has given rise to new challenges such as the increase of foreign-born cases in countries in the Global North. Drawing on literature from Science and Technology Studies (STS), medical anthropology and critical studies of global health, I propose to conduct a multi-sited ethnography focused on the uncounted lives of people affected by leprosy across borders in Latin America, examining WHO’s ongoing leprosy-free world project in specific settings. I argue that, in order to understand a possible drop in new cases and/or increase in under- and misdiagnosis, it is necessary to examine both local heterogenous elements and modifications in WHO’s global leprosy program. In particular, I will explore the modes of production of statistical data, central to evidence-making processes in the global epidemiological reality of leprosy.