How people affected by Chagas disease have struggled with their negligence: history, associative movement and World Chagas Disease Day.

It is well documented that Chagas disease (CD) can pose a public health problem to countries. As one of the World Health Organization Neglected Tropical Diseases undoubtedly calls for comprehensive healthcare, transcending a restricted biomedical approach. After more than a century since their discovery, in 1909, people affected by CD are still frequently marginalised and/or neglected. The aim of this article is to tell the story of their activism, highlighting key historical experiences and successful initiatives, from 1909 to 2019. The first association was created in 1987, in the city of Recife, Brazil. So far, thirty associations have been reported on five continents. They were created as independent non-profit civil society organisations and run democratically by affected people. Among the common associations' objectives, we notably find: increase the visibility of the affected; make their voice heard; build bridges between patients, health system professionals, public health officials, policy makers and the academic and scientific communities. The International Federation of Associations of People Affected by CD - FINDECHAGAS, created in 2010 with the input of the Americas, Europe and the Western Pacific, counts as one of the main responses to the globalisation of CD. Despite all the obstacles and difficulties encountered, the Federation has thrived, grown, and matured. As a result of this mobilisation along with the support of many national and international partners, in May 2019 the 72nd World Health Assembly decided to establish World Chagas Disease Day, on 14 April. The associative movement has increased the understanding of the challenges related to the disease and breaks the silence around Chagas disease, improving surveillance, and sustaining engagement towards the United Nations 2030 agenda.

The history of Chagas disease: reflections on science in action.

Approaching from the perspective of the history and social studies of science, the article analyses some aspects of the early history of Chagas disease, from its discovery through initial research. It is our goal to show that historians of science can explore this topic as a way not only of remembering and narrating past events but also of examining the processes through which science is produced. To this end, we present five basic precepts that have guided historical and sociological studies of "science in action": science as a collective endeavor, as a social activity, as a set of practices, as a process that involves controversies, and as a formative process. By examining the topic in the light of these five points, we demonstrate how the history of this successful research tradition can lead us to broader reflections about the complex dynamics interweaving science and society.

The history of Chagas disease: reflections on science in action

Approaching from the perspective of the history and social studies of science, the article analyses some aspects of the early history of Chagas disease, from its discovery through initial research. It is our goal to show that historians of science can explore this topic as a way not only of remembering and narrating past events but also of examining the processes through which science is produced. To this end, we present five basic precepts that have guided historical and sociological studies of "science in action": science as a collective endeavor, as a social activity, as a set of practices, as a process that involves controversies, and as a formative process. By examining the topic in the light of these five points, we demonstrate how the history of this successful research tradition can lead us to broader reflections about the complex dynamics interweaving science and society.

How people affected by Chagas disease have struggled with their negligence: history, associative movement and World Chagas Disease Day

It is well documented that Chagas disease (CD) can pose a public health problem to countries. As one of the World Health Organization Neglected Tropical Diseases undoubtedly calls for comprehensive healthcare, transcending a restricted biomedical approach. After more than a century since their discovery, in 1909, people affected by CD are still frequently marginalised and/or neglected. The aim of this article is to tell the story of their activism, highlighting key historical experiences and successful initiatives, from 1909 to 2019. The first association was created in 1987, in the city of Recife, Brazil. So far, thirty associations have been reported on five continents. They were created as independent non-profit civil society organisations and run democratically by affected people. Among the common associations' objectives, we notably find: increase the visibility of the affected; make their voice heard; build bridges between patients, health system professionals, public health officials, policy makers and the academic and scientific communities. The International Federation of Associations of People Affected by CD - FINDECHAGAS, created in 2010 with the input of the Americas, Europe and the Western Pacific, counts as one of the main responses to the globalisation of CD. Despite all the obstacles and difficulties encountered, the Federation has thrived, grown, and matured. As a result of this mobilisation along with the support of many national and international partners, in May 2019 the 72nd World Health Assembly decided to establish World Chagas Disease Day, on 14 April. The associative movement has increased the understanding of the challenges related to the disease and breaks the silence around Chagas disease, improving surveillance, and sustaining engagement towards the United Nations 2030 agenda.

[Rural endemic diseases, health and development: Emmanuel Dias and the construction of a network of allies against Chagas disease]. / Endemias rurais, saúde e desenvolvimento: Emmanuel Dias e a construção de uma rede de aliados contra a doença de Chagas.

The scope of this article is to analyze the trajectory of Emmanuel Dias (1908-1962), a researcher at the Oswaldo Cruz Institute (OCI) and director of the Center for Studies and Prophylaxis of Chagas Disease (OCI outpost established in 1943 in the city of Bambuí, Minas Gerais), as a key actor in the acknowledgement of Chagas disease as a public health problem in Brazil and the Americas. It seeks to show that the conquest of this acknowledgement, the cornerstone of which was the staging of the first campaign to combat the disease in Brazil in 1950, was made possible by the intense political mobilization of Dias together with the various social groups, such as physicians, politicians and residents of rural areas, public health officials, governments and international organizations. This mobilization occurred during the 1940s and 1950s in a historical context marked by intense debate about the relationship between health and development and helped to construct a network of alliances that was critical for the recognition of Chagas disease as a chronic cardiopathy, which threatened the productivity of rural workers and represented a medical and social problem that merited public health actions and programs geared to get it under control.

Endemias rurais, saúde e desenvolvimento: Emmanuel Dias e a construção de uma rede de aliados contra a doença de Chagas / Rural endemic diseases, health and development: Emmanuel Dias and the construction of a network of allies against Chagas disease

Resumo O objetivo deste artigo é analisar a atuação de Emmanuel Dias (1908-1962), pesquisador do Instituto Oswaldo Cruz (IOC) e diretor do Centro de Estudos e Profilaxia da Moléstia de Chagas (posto do IOC criado em 1943 na cidade de Bambuí, Minas Gerais), como ator decisivo no processo de reconhecimento da doença de Chagas como problema de saúde pública no Brasil e no continente americano. Busca-se evidenciar que a conquista deste reconhecimento, que teve como marco fundamental a realização da primeira campanha de combate à enfermidade no Brasil em 1950, foi viabilizada pela intensa mobilização política de Dias junto a diversos grupos sociais, como médicos, políticos e moradores das áreas rurais, profissionais dos serviços públicos de saúde, governos e associações internacionais. Tal mobilização, ao longo das décadas de 1940 e 1950, num contexto histórico marcado por intensos debates sobre as relações entre saúde e desenvolvimento, levou à construção de uma rede de apoios decisiva para que a doença, caracterizada como cardiopatia crônica a ameaçar a produtividade do trabalhador rural, fosse considerada um problema médico-social a merecer ações e programas de saúde pública voltados para seu controle.

Abstract The scope of this article is to analyze the trajectory of Emmanuel Dias (1908-1962), a researcher at the Oswaldo Cruz Institute (OCI) and director of the Center for Studies and Prophylaxis of Chagas Disease (OCI outpost established in 1943 in the city of Bambuí, Minas Gerais), as a key actor in the acknowledgement of Chagas disease as a public health problem in Brazil and the Americas. It seeks to show that the conquest of this acknowledgement, the cornerstone of which was the staging of the first campaign to combat the disease in Brazil in 1950, was made possible by the intense political mobilization of Dias together with the various social groups, such as physicians, politicians and residents of rural areas, public health officials, governments and international organizations. This mobilization occurred during the 1940s and 1950s in a historical context marked by intense debate about the relationship between health and development and helped to construct a network of alliances that was critical for the recognition of Chagas disease as a chronic cardiopathy, which threatened the productivity of rural workers and represented a medical and social problem that merited public health actions and programs geared to get it under control.

Um cientista em ação: Emmanuel Dias e a mobilização social em torno da Doença de Chagas no Brasil (décadas de 1940 e 1950) / A scientist in action: Emmanuel Dias and social mobilization around Chagas disease in Brazil (1940s and 1950s)

O objetivo deste texto é analisar a atuação de um grupo de pesquisadores do Instituto Oswaldo Cruz (IOC) envolvido com o estudo e o combate da tripanossomíase americana (mais conhecida como Doença de Chagas) nas décadas de 1940 e 1950, sob a liderança de Emmanuel Dias, discípulo de Carlos Chagas, que descreveu a doença em 1909. (AU)

From the Beginnings: debates on the history of science in Brazil

This article analyzes the ways in which the book Beginnings of Brazilian Science: Oswaldo Cruz, Medical Research and Policy, 1890–1920, published by Nancy Leys Stepan in 1976, has been received in the debates on science and the history of science in Brazil. Our purpose is to show how the discussions prompted by Stepan's book have been directly linked to the emergence of a new historiography of science in that country since the early 1980s, as a professionalized and institutionalized scholarly field. This process has been associated, in turn, with a broader policy debate in Brazil and Spanish America on the particular features of science, and of the history of science, in the so-called developing countries. We also seek to show the extent to which some of the questions posed in The Beginnings of Brazilian Science are still richly relevant to academic and political consideration of the complexity and specificity of the historical and social process of institutionalization of science. Rather than attempt an exhaustive analysis of the readings of Stepan's work, we will focus on the main areas of historiographic debate, based on the more representative works and authors, especially in the 1980s and 1990s. (AU)

A descoberta da doença dos sertões: ciência e saúde nos trópicos brasileiros no início do século XX / The discovery of the backwoods disease: science and health in the Brazilian tropics in the early twentieth century

O objetivo do presente texto é analisar os significados que a descoberta da doença de Chagas assumiu no processo de legitimação social da ciência brasileira nas primeiras décadas do século XX e na formulação da ideia de que o atraso do país era resultado das más condições de saúde e vida de seu interior - concepção esta que a partir de meados da década de 1910 seria amplificada pelo chamado movimento sanitarista, que preconizava o saneamento dos sertões como condição fundamental para o progresso da nação. Tendo sido viabilizada e emoldurada a partir de determinados recursos cognitivos, sociais e institucionais, a descoberta constituiu um marco fundamental de sentido para o próprio desenho da nova enfermidade, que, por sua vez, viria a se constituir como moldura para um novo olhar sobre a nação, seus problemas e o papel social da ciência como caminho para enfrentá-los.(AU)

Bocio, mal de Chagas e identidad nacional. Enfermedades y polémicas en Argentina y Brasil (1910-1940) / Goiter, Chagas disease and national identity. Diseases and controversies in Argentina and Brasil (1910-1940)

Este artículo realiza un análisis de la construcción de las patologías nacionales en Brasil y Argentina entre la primera y la cuarta década del siglo XX. Se considera el debate científico, social y político sobre el mal de Chagas y el bocio, así como las relaciones entre ese debate y la producción colectiva de la nacionalidad brasileña y argentina. En tal sentido, el «descubrimiento » de las patologías del interior significó en Brasil la generación de un proyecto sanitarista de proyección nacional, mientras que en Argentina tal situación se dio moderadamente, en la medida que la preocupación central estaba en las enfermedades consideradas producto de la «civilización», como responsabilidad de la inmigración extranjera. (AU)

The discovery of Trypanosoma cruzi and Chagas disease (1908-1909): tropical medicine in Brazil.

This article analyzes the discovery of Chagas disease and the parasite that causes it (Trypanosoma cruzi) by Carlos Chagas in 1908/1909, with a special focus on the scientific and social context in which this occurred. Its inclusion in the international debate on European tropical medicine--especially with researchers from the German school of protozoology--and its connection with discussions on the modernization of the recently established Brazilian Republic are also examined. The discovery of Chagas disease became a decisive aspect in the scientific project that Oswaldo Cruz sought to establish at the institute that bears his name. It was extolled as a symbol of Brazil's scientific ability t produce knowledge in line with the international scientific agenda, while simultaneously being attuned to the specific problems of the country.

[Carlos Chagas and the debates and controversies surrounding the disease of Brazil (1909-1923)]. / Carlos Chagas e os debates e controvérsias sobre a doença do Brasil. (1909-1923).

The article explores the relation between the debate on Chagas' disease, discovered in 1909, and Brazil's 1916-1920 rural sanitation campaign. It argues that the political planks of the sanitary movement were intimately bound up with the definition and legitimization of this illness as a scientific fact and social issue. Presented as emblematic of rural endemic disease, this 'new tropical ailment' was characterized as 'the disease of Brazil', symbol of a 'sickly country'. The sanitary campaign was in turn a decisive element of the 1919-1923 polemic surrounding the disease. This is an exemplary case of how Brazilian scientists used theories from European tropical medicine to produce original knowledge in the field, basing themselves on meanings specific to the national context of their day.

Carlos Chagas e os debates e controvérsias sobre a doença do Brasil (1909-1923) / Carlos Chagas and the debates and controversies surrounding the disease of Brazil (1909-1923)

Analisa o debate sobre a doença de Chagas, descoberta em 1909, em sua relação com a campanha pelo saneamento rural do Brasil (1916-1920). Argumenta que as bandeiras desse movimento estiveram diretamente referidas à definição e à legitimação dessa enfermidade como fato científico e problema social. A 'nova moléstia tropical', apresentada como emblema das endemia rurais, foi caracterizada como 'doença do Brasil', símbolo de um 'país doente'. A campanha sanitarista foi, por sua vez, elemento decisivo da polêmica em torno da doença de 1919 a 1923. Trata-se, portanto, de um caso exemplar de como as teorias da medicina tropical europeia foram utilizadas pelos cientistas brasileiros para produzir conhecimentos originais nesse campo, a partir de sentidos específicos ao contexto nacional do período.

The article explores the relation between the debate on Chagas' disease, discovered in 1909, and Brazil's 1916-1920 rural sanitation campaign. It argues that the political planks of the sanitary movement were intimately bound up with the definition and legitimization of this illness as a scientific fact and social issue. Presented as emblematic of rural endemic disease, this 'new tropical ailment' was characterized as 'the disease of Brazil', symbol of a 'sickly country'. The sanitary campaign was in turn a decisive element of the 1919-1923 polemic surrounding the disease. This is an exemplary case of how Brazilian scientists used theories from European tropical medicine to produce original knowledge in the field, basing themselves on meanings specific to the national context of their day.

The discovery of Trypanosoma cruzi and Chagas disease (1908-1909): tropical medicine in Brazil / A descoberta do Trypanosoma cruzi e da doença de Chagas (1908-1909): medicina tropical no Brasil

This article analyzes the discovery of Chagas disease and the parasite that causes it (Trypanosoma cruzi) by Carlos Chagas in 1908/1909, with a special focus on the scientific and social context in which this occurred. Its inclusion in the international debate on European tropical medicine - especially with researchers from the German school of protozoology - and its connection with discussions on the modernization of the recently established Brazilian Republic are also examined. The discovery of Chagas disease became a decisive aspect in the scientific project that Oswaldo Cruz sought to establish at the institute that bears his name. It was extolled as a symbol of Brazil's scientific ability to produce knowledge in line with the international scientific agenda, while simultaneously being attuned to the specific problems of the country.

Analisa o contexto científico e social da descoberta, por Carlos Chagas, em 1908/1909, da doença que leva seu nome, bem como do Trypanosoma cruzi, parasito que causa esta enfermidade. Examina sua inserção no debate internacional da medicina tropical - especialmente com pesquisadores da escola alemã de protozoologia - e nas discussões sobre a modernização brasileira. A descoberta foi decisiva ao projeto de ciência que Oswaldo Cruz pretendida erigir no Instituto de Manguinhos. Foi enaltecida como símbolo da capacidade da ciência nacional em produzir conhecimentos afinados com a agenda científica internacional e, ao mesmo tempo, relacionados aos problemas específicos do Brasil.

The discovery of Trypanosoma cruzi and Chagas disease (1908-1909): tropical medicine in Brazil

This article analyzes the discovery of Chagas disease and the parasite that causes it (Trypanosoma cruzi) by Carlos Chagas in 1908/1909, with a special focus on the scientific and social context in which this occurred. Its inclusion in the international debate on European tropical medicine - especially with researchers from the German school of protozoology - and its connection with discussions on the modernization of the recently established Brazilian Republic are also examined. The discovery of Chagas disease became a decisive aspect in the scientific project that Oswaldo Cruz sought to establish at the institute that bears his name. It was extolled as a symbol of Brazil's scientific ability to produce knowledge in line with the international scientific agenda, while simultaneously being attuned to the specific problems of the country.(AU)

Carlos Chagas e os debates e controvérsias sobre a doença do Brasil (1909-1923) / Carlos Chagas and the debates and controversies surrounding the disease of Brazil (1909-1923)

Analisa o debate sobre a doença de Chagas, descoberta em 1909, em sua relação com a campanha pelo saneamento rural do Brasil (1916-1920). Argumenta que as bandeiras desse movimento estiveram diretamente referidas à definição e à legitimação dessa enfermidade como fato científico e problema social. A 'nova moléstia tropical', apresentada como emblema das endemia rurais, foi caracterizada como 'doença do Brasil', símbolo de um 'país doente'. A campanha sanitarista foi, por sua vez, elemento decisivo da polêmica em torno da doença de 1919 a 1923. Trata-se, portanto, de um caso exemplar de como as teorias da medicina tropical europeia foram utilizadas pelos cientistas brasileiros para produzir conhecimentos originais nesse campo, a partir de sentidos específicos ao contexto nacional do período.(AU)