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

Informations projet

Absent Presences

N° de convention de subvention: 886338

DOI

10.3030/886338

Projet clôturé

Date de signature de la CE 3 Mars 2020

Date de début 1 Août 2020

Date de fin 31 Juillet 2022

Financé au titre de

• EXCELLENT SCIENCE - Marie Skłodowska-Curie Actions

Coût total

€ 174 806,40

Contribution de l’UE

€ 174 806,40

Coordonné par

FREIE UNIVERSITAET BERLIN
Germany

Periodic Reporting for period 1 - Absent Presences (Absent Presences: an ethnographic study of the uncounted lives of people affected by leprosy in Latin America)

Période du rapport: 2020-08-01 au 2022-07-31

Résumé du contexte et des objectifs généraux du projet

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.

Travail effectué depuis le début du projet jusqu’à la fin de la période considérée dans le rapport et principaux résultats atteints jusqu’à présent

In the first few months of this project, the main researcher carried out an analysis of documents, such as WHO’s guidelines for leprosy elimination, WHO’s official strategies and campaigns to eliminate leprosy, national guidelines, and other related and relevant documents. It allowed for the examination of how the number of cases was to be counted and accounted for—how these measuring schemes shaped the way epidemiological data on leprosy has been produced. At the same time, the researcher conducted online interviews with hospital directors, leprologists, people affected by leprosy, and other key interlocutors in order to understand how WHO’s campaign to eliminate leprosy was implemented in specific settings in Brazil. At a later stage of the project, the researcher conducted on-site interviews with people affected by leprosy, family members, and activists of the main social movement of people affected by this disease in Brazil. It allowed for a deeper examination of how the lives of people affected by leprosy (known in Brazil as Hansen’s disease) have been directly affected by the so-called leprosy-free world campaigns.
The results of this MSC Action have been discussed, communicated, and disseminated in different ways, including but not limited to academic meetings, online events, guest lectures, peer-reviewed open-access academic articles, and a peer-reviewed open-access academic book.

Progrès au-delà de l’état des connaissances et impact potentiel prévu (y compris l’impact socio-économique et les conséquences sociétales plus larges du projet jusqu’à présent)

Unfolding connections between numbers, international agencies, medical treatments, and people have been the project’s main scientific achievement. It provided a detailed account of what we called the “ontological politics of leprosy elimination”, which draws attention to the way in which statistical data contributes to rendering invisible a series of ongoing social and scientific issues surrounding the control of leprosy. It contributed to advancing the state of the art in the fields of medical anthropology and anthropology of science and technology by exploring the potential of an ethnographical work conducted at the intersection between governmental norms, forms, categories, and its everyday impact on people’s lives. Although there have been many different studies that analyzed present and past aspects surrounding leprosy-control policies in different settings, this project innovated in its scientific objectives by addressing the intersection between patients’ political claims and needs, and the modes of production of epidemiological data.
Under the current metrics used to measure the cases, leprosy is often taken as a matter of the past, which has already been well-deciphered by science and (almost completely) controlled by the efforts of national health systems. However, this project was able to give a detailed account of the ongoing challenges and unanswered issues regarding leprosy (as a scientific object as well as a societal issue)—and, more than that, it called attention to how the lives of patients in Brazil are affected by the lack of visibility that this process entails.
The project results have the potential to help policymakers in developing new public policies not only in the field of leprosy control but also concerning other chronic diseases. It promotes the resetting of priorities in the field of research development, new drug development, and health-related active surveillance campaigns. Moreover, it calls attention to the right of participation of health recipients in the development of health programs and it underlines its political importance.

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