Castro M. The plague: the holocaust of leprosy. Exciting stories of isolation, death and life in Brazil's leprosy.
Chronic, infectious-contagious, whose etiologic agent is Mycobacterium leprae, Hansen's disease can generate neural lesions, disability, being related to poverty and stigma (1,2). Its magnitude is still high, remaining as a public health problem (1). According to World Health Organization (WHO), in 2016, more than 140 countries reported almost 215,000 new cases of Hansen's disease and, in Brazil, in the same year, just over 25,000 new cases were notified and, regarding case numbers, Brazil is in the second position among all countries (1).
The WHO Global Strategy for Leprosy 2016-2020, which Brazil is a signatory, is based on strengthening government control and partnership, combating Hansen'se disease and its complications, and addressing discrimination by the means of social inclusion promotion (1). Addressing prejudice and stigma as well as raising community awareness are also objectives of this WHO Strategy (1). In line with this Global Strategy, and as a first concrete step, brazilian actions included 'Innovative Approaches Project to intensify efforts for Brazil-free Hansen's disease', organized by the Brazilian Ministry of Health and the Panamerican Health Organization (PAHO) with support of Japan. The initiative seeks to reduce the burden of Hansen's disease in twenty cities with the highest number of Hansen's disease cases diagnosed in children under fifteen years old in the states of Sao Paulo, Maranhao, Mato Grosso, Para, Pernambuco, Piaui and Tocantins. The initiative was based on a previous project in Palmas, capital of Tocantins state. The aim of this project in Palmas was to capacitate primary care professionals, enabling them to diagnose and treat patients with Hansen's disease (3).
In order to inform and raise readers awarewness about the Hansen's disease, Manuela Castro's book "A Praga" is shown as a way to bring to the public the result of a previous research done by the author on the history of Hansen's disease in Brazil. According to the author herself, the documentary was produced, to expose such reality; however was not enough to exploit the wealth of information collected on the Hansen's disease theme. Thus, the book takes a multifocal approach to political, historical, social, and humanitarian aspects, with short chapters interspersed with images, making it a complete yet easy way to learn about the disease and its impact on the Brazilian history.
As for the chapters, they are, in all, twenty-four, whose titles do not hide the question of isolation and segregation. Examples are the strong and explicit titles of chapters II, V, XVI, and XXII respectively: "You can not even touch your baby"; 'Seven brothers condemned to isolation'; 'More ignored than the sick, only laws'; 'Leprous litter'. In the vocabulary used, one can also see an effective awareness-raising tool, as it can be seen, again, in the title of chapter X, "A Story that Shakes It All the Way".
Regarding the images, they were an efficient strategy not only to bring lightness to the reading but also to highlight the journalistic character of the work. Manuela Castro collects reports, which, so striking, seem almost to depart from reality; but the photos remind the reader of the reality of the suffering and help building a portray of how it was, mainly, the scenario during the time of the leprosariums. It is worth mentioning that a number of images are pictures taken by the journalist while conducting the interviews, which brings the reader closer to the research process.
The organization chosen by the author in presenting the data did occurred in a completely chronological way, which can be a challenge for some readers who are more interested in the temporal ordering of the facts: the narrative about public policy is interspersed with that of the protagonists of the reports, the Movement of Reintegration of People Affected by Leprosy (Morhan) as well as the history of the different colonies. However, at the end of the book, Castro retakes the subjects of the first chapters, which suggests care in choosing the order of the topics covered. The author, for example, brings a relatively recent narrative already in the second chapter; this contributes to bring empathy in the reader, and helps arising more interest on the subject, especially when it comes to topics such as laws, conferences and projects.
In a more technical view, it is interesting to understand the methods used by Castro: the interview and the analysis of documents. As explained, the research carried out approached different perspectives of Hansen's disease, including statistical aspects and the use of indicators, especially in chapter XX --'Twelve thousand requirements of Hansen's disease victims'. However, one can not rule out the main qualitative character of her scientificity: the author systematizes her work with a strong focus on the individual or in his community bringing, from them, the dimension of the disease. This focus is a virtue since the book shows clearly a strong relationship with the Social Sciences, bringing a deep view in each aspect. The book, therefore, refers to the work of Maria Cecilia Minayo, 2010, that emphasized that, in the Social Sciences there is an identity between the subject that conducts the research and its object, having a common substratum of identity with the researcher (4). The book is still in tune with an idea launched more than 30 years ago by the philosopher Mcluhan: that the mass media are, in fact, windows that show the reality to the world (5).
A striking feature of the book is the author's engagement, probably a natural process after contact with so many stories. The deepening of chapter XXII, already quoted here--'Litter of Lepers'--is reflected in the following: "Compensation takes time, delay takes time, justice takes time ... There are so many years of effort and so many requests of effort that one can not miss this target". This example shows the feeling of someone who has mobilized herself and who nurtures hope in the achievements of the old inner patients in the so-called leprosariums.
The book is truly relevant, given the dimension of the issue. The policy of compulsory isolation has involved a vast number of patients and their families, with more than twelve thousand inmates who have applied for compensation. Therefore, there the transcendence for the sphere of families was of immense magnitude. Another reason for the relevance of this book is that it addresses an unexplored issue when compared to other state-backed violence in the past, such as slavery. Thus, the author refers to the violence of separations, in which children were separated from their parents, families were socially condemned, patients were subjected to obligatory, often ineffective and painful, treatments. The compulsory isolation of Hansen's diseased and how it was done were made clear. In this way, this book is intended for all those interested in the subject, and could be easily adopted by teachers from infectious diseases and epidemiological surveillance areas, bringing to the young scholars a comprehensive book, augmenting the desire to learn more about the subject.
Finally, to preserve the historical memory (what could be done by changing old leprosariums into museums, according to the author), on reparations (for children of inmates, for example), much has to be done. Also, pain and sequelae could be avoided if early diagnoses increase: more than three million cases of Hansen's disease go unnoticed in the world. That is, the book not only tells a story of suffering but also warns for the need, comprehensive and resolute government policies. This book is a work that speaks of the past, drawing attention to the future.
(1.) Brasil. Ministerio da Saude (MS). Secretaria de Vigilancia em Saude. Hanseniase. Boletim Epidemiologico. Vol. 49 (4). 2018. 12 p. [acessado 2018 Maio 20] Disponivel em: http://portalarquivos2.saude.gov.br/images/pdf/2018/ janeiro/31/2018-004-Hanseniase-publicacao.pdf
(2.) Souza EA, Ferreira AAF, Boigny RN, Alencar CH, Heukelbach J, Martins-Melo FR, Barbosa JC, Ramos Junior AN. Hanseniase e genero no Brasil: tendencias em area endemica da regiao Nordeste, 2001-2014. Rev Saude Publica 2018; 52(20):1-12
(3.) Organizacao Panamericama de Saude (OPAS), Organizacao Mundial de Saude (OMS). OPAS/OMS apresenta estrategia global e projeto para livrar Brasil da hanseniase. [acessado 2018 Maio 27]: cerca de 2 p. Disponivel em: https://www.paho.org/bra/index.php?option=com_content&view=article&id=5531:opas-oms-apresenta-es- trategia-global-e-projeto-para-livrar-brasil-da-hanseniase&Itemid=812
(4.) Minayo MCS. Pesquisa Social: teoria, metodo e criatividade. 29a ed. Petropolis: Vozes; 2010.
(5.) Mclunhan, M. Os meios de comunicacao como extensao do homem (undestanding media). Rio de Janeiro: Editora Vozes Ltda; 1993.
Isabela Colem Castelo Borges
Carla Jorge Machado
 Universidade Federal de Sao Joao Del Rey. Sao Joao Del Rey MG Brasil.
 Faculdade de Medicina, Universidade Federal de Minas Gerais. Belo Horizonte MG Brasil.
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|Author:||Borges, Isabela Colem Castelo; Machado, Carla Jorge|
|Publication:||Ciencia & Saude Coletiva|
|Article Type:||Resena de libro|
|Date:||Apr 1, 2019|
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