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

Programme(s): H2020-EU.1.3.2. - Nurturing excellence by means of cross-border and cross-sector mobility

Topic(s): MSCA-IF-2019 - Individual Fellowships

Call for proposal: H2020-MSCA-IF-2019

Funding Scheme: MSCA-IF-EF-ST - Standard EF

Grant agreement ID: 886338

Project description: A closer look at the elimination of leprosy

In 2000, the World Health Organization (WHO) announced the elimination of leprosy as a global public health problem. The number of affected people has decreased dramatically since the 1980s due to the advent of multidrug therapy. However, such extraordinary decrease might be partially explained by the increase in misdiagnosed cases. As some researchers have argued, the announcement of the global elimination of leprosy has caused the closing down of awareness campaigns as well as the progressive loss of expertise in diagnosing leprosy. As a consequence, people affected by leprosy are being overlooked worldwide. The EU-funded Absent Presences project will conduct an ethnographic research targeting the lives of uncounted people affected by leprosy in Latin America and, by doing so, examine the impact of WHO’s announcement in this specific context.

Objective:

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.