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. (CD countries healthcare approach discovery andor or neglected activism initiatives 190 1987 Recife Brazil far continents nonprofit non profit objectives find heard patients professionals officials communities FINDECHAGAS 201 Americas Pacific encountered thrived grown matured partners nd Day 1 April surveillance 203 agenda 19 198 20 2

Chagas is a complex, multidimensional phenomenon in which political, economic, environmental, biomedical, epidemiological, psychological, and sociocultural factors intersect. Nonetheless, the hegemonic conceptualisation has long envisioned Chagas as primarily a biomedical question, while ignoring or downplaying the other dimensions, and this limited view has reinforced the disease’s long neglect. Integrating the multiple dimensions of the problem into a coherent approach adapted to field realities and needs represents an immense challenge, but the payoff is more effective and sustainable experiences, with higher social awareness, increased case detection and follow-up, improved adherence to care, and integrated participation of various actors from multiple action levels. Information, Education, and Communication (IEC) initiatives have great potential for impact in the implementation of multidimensional programs of prevention and control successfully customised to the diverse and complex contexts where Chagas disease persists. political economic environmental epidemiological psychological intersect Nonetheless question diseases s neglect challenge experiences awareness followup, followup follow up, up follow-up care levels Information Education IEC (IEC persists

BACKGROUND Chagas disease, caused by Trypanosoma cruzi, affects nearly six million people worldwide. Various serological tests have been developed for its diagnosis. OBJECTIVE Examine the performance of a set of commercial immunological assays in relation to the geographical origin of the patient sample comparing four states of Brazil: Amazonas (AM), Mato Grosso do Sul (MS), Minas Gerais (MG) and Piauí (PI). METHODS Seven immunoassays were employed to detect anti-T. cruzi IgG antibodies in 379 patient samples that had been previously diagnosed using the two-step protocol required by the Brazilian Ministry of Health. FINDINGS A significant variation in the percent reactive was calculated for the samples from AM and MS, while the PI and MG showed a significant variation in the percent non-reactive. The average reactivity index was significantly higher for samples from the states of PI and MG states than AM and MS. MAIN CONCLUSIONS All tests presented a satisfactory performance overall. Yet, variations were observed that were associated to the region of origin of the samples. Our analyses suggest that future evaluations of immunoassays should include a sampling of sera from regions where the test will be applied in addition to the available International Biological Reference Standards.

Visando a aumentar a precisão do diagnóstico, a Organização Mundial da Saúde recomenda executar dois ou mais testes imunoserológicos para o diagnóstico na fase crônica da doença de Chagas. O objetivo deste trabalho foi fazer uma revisão sistemática rápida sobre o desempenho de técnicas imunoserológicas e métodos moleculares na população em geral. Foram identificados 178 estudos dos quais se incluíram nove. Técnicas de ELISA mostraram a maior sensibilidade (82-98%) e especificidade (96-100%). Métodos rápidos apresentaram valores de sensibilidade e especificidade de 88-93% e 97-100%, respectivamente enquanto que os métodos moleculares (PCR) tinham níveis extremamente variáveis de sensibilidade (22-92%) e especificidade (70-100%). Estes resultados mostram que as técnicas de ELISA possuem sensibilidade e especificidade adequadas. A PCR, bem como os métodos rápidos, mostrou grande variabilidade nos resultados, principalmente devido à heterogeneidade das técnicas e profusão de métodos desenvolvidos de modo in house.

In order to increase diagnostic accuracy, the World Health Organization recommends performing two or more immunoserological tests for the diagnosis of Chagas disease in chronic stage. The aim of this work was to make a rapid systematic review of the performance of immunoserological techniques and molecular methods in the general population. A total of 178 studies were identified, nine ofwhich were included. ELISA techniques showed the highest sensitivity (82-98%) and specificity (96-100%). Rapid methods presented values of sensitivity between 88-93% and 97-100% of specificity, while the molecular methods (PCR) showed highly variable levels of sensitivity (22-92%) and specificity (70-100%). These results indicate that ELISA techniques have adequate sensitivity and specificity. PCR, as well as rapid methods, showed great variability in the results, mainly due to the heterogeneity of the techniques and abundance of “in-house” methods.

Con el objetivo de incrementar la precisión diagnóstica, la Organización Mundial de la Salud recomienda la realización de dos o más pruebas inmunoserológicas para el diagnóstico de la enfermedad de Chagas en etapa crónica. El objetivo de este trabajo fue realizar una revisión sistemática rápida acerca del desempeño de las técnicas inmunoserológicas y métodos moleculares en la población general. Se identificaron 178 estudios de los cuales fueron incluidos nueve. Las técnicas de ELISA mostraron la mayor sensibilidad (82-98%) y especificidad (96-100%). Los métodos rápidos mostraron valores de sensibilidad entre 88-93% y especificidad 97- 100%, mientras que los métodos moleculares (PCR) presentaron niveles muy variables de sensibilidad (22-92%) y especificidad (70-100%). Estos resultados muestran que las técnicas de ELISA cuentan con una sensibilidad y especificidad adecuadas. La PCR, al igual que los métodos rápidos, mostró una gran variabilidad en los resultados, debido principalmente a la heterogeneidad de la técnicas y profusión de métodos elaborados de manera in house.

O artigo apresenta um estudo internacional realizado entre outubro de 2011 e janeiro de 2012, no qual se baseou o desenho e elaboração de um vídeo (spot) que tinha como objetivo a sensibilização e promoção da visibilidade da problemática vinculada à doença de Chagas. A pesquisa, de caráter qualitativo, analisou a informação recolhida por meio de 38 questionários respondidos por pessoas afetadas e especialistas sobre a doença. A informação, para cada um dos dois grupos, foi classificada de acordo com os aspectos que as pessoas associavam com a palavra Chagas, e as dificuldades, adversidades, desafios e conquistas vinculadas com a doença. Para cada um dos referidos aspectos, apresenta-se uma análise das respostas, relatos e anedotas. As conclusões reforçam a necessidade de se conhecer e divulgar as dificuldades vividas pelas pessoas afetadas pela doença de Chagas, tendo em mente que se trata de uma realidade que se manifesta de forma diversa dependendo do contexto.

This paper presents an international study that was conducted between October 2011 and January 2012, in which a video (spot) to boost awareness and raise the profile of Chagas disease issues was designed and developed. This study was of qualitative nature and analyzed information that was gathered from 38 questionnaires that had been answered by individuals affected by the disease and by specialists on this disease. The information from each group was classified according to factors that they associated with the word Chagas, along with the difficulties, adversities, challenges, objectives and achievements relating to the disease. The responses, reports and anecdotes relating to each of these factors were analyzed. The conclusions emphasize the need to know and make known the difficulties that people affected by Chagas disease experience, bearing in mind that the realities are manifested differently depending on the context.

El artículo da cuenta de un estudio internacional realizado entre octubre de 2011 y enero de 2012, como fundamento para el diseño y elaboración de un material audiovisual (spot) con el objeto de sensibilizar y visibilizar la problemática del Chagas. La investigación, de carácter cualitativo, recogió los datos de 38 encuestas, respondidas por personas afectadas y especialistas en la temática. La información para cada grupo se ordenó según aspectos que las personas asociaban con la palabra Chagas, y dificultades, retos, desafíos y logros vinculados. Para cada punto se presenta un análisis de las respuestas, relatos y anécdotas relacionadas. Las conclusiones refuerzan la necesidad de conocer y dar a conocer las dificultades que viven las personas afectadas por el Chagas, considerando que se trata de una realidad que tiene diversas manifestaciones dependiendo del contexto.

O artigo apresenta um estudo internacional realizado entre outubro de 2011 e janeiro de 2012, no qual se baseou o desenho e elaboração de um vídeo (spot) que tinha como objetivo a sensibilização e promoção da visibilidade da problemática vinculada à doença de Chagas. A pesquisa, de caráter qualitativo, analisou a informação recolhida por meio de 38 questionários respondidos por pessoas afetadas e especialistas sobre a doença. A informação, para cada um dos dois grupos, foi classificada de acordo com os aspectos que as pessoas associavam com a palavra Chagas, e as dificuldades, adversidades, desafios e conquistas vinculadas com a doença. Para cada um dos referidos aspectos, apresenta-se uma análise das respostas, relatos e anedotas. As conclusões reforçam a necessidade de se conhecer e divulgar as dificuldades vividas pelas pessoas afetadas pela doença de Chagas, tendo em mente que se trata de uma realidade que se manifesta de forma diversa dependendo do contexto.

This paper presents an international study that was conducted between October 2011 and January 2012, in which a video (spot) to boost awareness and raise the profile of Chagas disease issues was designed and developed. This study was of qualitative nature and analyzed information that was gathered from 38 questionnaires that had been answered by individuals affected by the disease and by specialists on this disease. The information from each group was classified according to factors that they associated with the word Chagas, along with the difficulties, adversities, challenges, objectives and achievements relating to the disease. The responses, reports and anecdotes relating to each of these factors were analyzed. The conclusions emphasize the need to know and make known the difficulties that people affected by Chagas disease experience, bearing in mind that the realities are manifested differently depending on the context.

El artículo da cuenta de un estudio internacional realizado entre octubre de 2011 y enero de 2012, como fundamento para el diseño y elaboración de un material audiovisual (spot) con el objeto de sensibilizar y visibilizar la problemática del Chagas. La investigación, de carácter cualitativo, recogió los datos de 38 encuestas, respondidas por personas afectadas y especialistas en la temática. La información para cada grupo se ordenó según aspectos que las personas asociaban con la palabra Chagas, y dificultades, retos, desafíos y logros vinculados. Para cada punto se presenta un análisis de las respuestas, relatos y anécdotas relacionadas. Las conclusiones refuerzan la necesidad de conocer y dar a conocer las dificultades que viven las personas afectadas por el Chagas, considerando que se trata de una realidad que tiene diversas manifestaciones dependiendo del contexto.

The etiological treatment of Chagas disease is recommended for all patients with acute or recent chronic infection, but controversies remain regarding the benefit of chemotherapy and interpretations of the parasitological cure after etiological treatment. This study compares the laboratory and clinical evaluations of Chagas disease patients who were diagnosed 13 years earlier. Fifty-eight Chagas disease patients (29 treated with benznidazole and 29 untreated) were matched at the time of treatment based on several variables. Conventional serology revealed the absence of seroconversion in all patients. However, lower serological titres were verified in the treated group, primarily among patients who had the indeterminate form of the disease. Haemoculture performed 13 years after the intervention was positive for 6.9% and 27.6% of the treated and untreated patients, respectively. Polymerase chain reaction tests were positive for 44.8% and 13.8% of the treated and untreated patients, respectively. Patients who presented with the indeterminate form of the disease at the beginning of the study exhibited less clinical progression (17.4%) compared with the untreated group (56.5%). Therefore, this global analysis revealed that etiological treatment with benznidazole may benefit patients with respect to the clinical progression of Chagas disease and the prognosis, particularly when administered to patients with the indeterminate form of the disease.

INTRODUÇÃO: O objetivo foi desenvolver um método sorológico in-house de alta especificidade e sensibilidade para diagnosticar e monitorar a morbidade da doença de Chagas. MÉTODOS: Para tal, a reatividade sorológica de IgG e subclasses foi testada em soros de pacientes chagásicos de Berilo, Vale do Jequitinhonha/MG/Brasil. A reatividade sorológica foi também avaliada em amostras de pacientes com outras doenças infecto-contagiosas relevantes, incluindo o HIV, vírus da hepatite C (VHC), sífilis (SYP), leishmaniose visceral (LV), leishmaniose tegumentar americana (LTA) e controles não infectados (NI) para verificar o desempenho do método. Outras análises foram feitas para avaliar a aplicabilidade desta metodologia no monitoramento da morbidade da doença de Chagas. Com este propósito os pacientes com doença de Chagas foram anteriormente classificados em três grupos: indeterminados (IND), cardíacos (CARD) e digestivos/mistos (DIG/Mis) conforme seu estado clínico. RESULTADOS: A análise da reatividade sorológica de IgG total na diluição 1:40 mostrou ser uma abordagem importante no diagnóstico da doença de Chagas (100% de sensibilidade e especificidade e ausência de reação cruzada com as demais infecções). A análise das subclasses de IgG mostrou reação cruzada principalmente com NI, LV e LTA em todas as diluições. O grupo IND apresentou a maior reatividade para IgG3 e o grupo DIG/Mis apresentou nível mais elevado de IgG se comparados aos grupos IND e CARD. CONCLUSÕES: Estes achados demonstram que o método de ELISA in-house apresenta uma promissora aplicabilidade no diagnóstico diferencial e na avaliação da morbidade da doença de Chagas.

INTRODUCTION: The goal was to develop an in-house serological method with high specificity and sensitivity for diagnosis and monitoring of Chagas disease morbidity. METHODS: With this purpose, the reactivities of anti-T. cruzi IgG and subclasses were tested in successive serum dilutions of patients from Berilo municipality, Jequitinhonha Valley, Minas Gerais, Brazil. The performance of the in-house ELISA was also evaluated in samples from other relevant infectious diseases, including HIV, hepatitis C (HCV), syphilis (SYP), visceral leishmaniasis (VL), and American tegumentary leishmaniasis (ATL), and noninfected controls (NI). Further analysis was performed to evaluate the applicability of this in-house methodology for monitoring Chagas disease morbidity into three groups of patients: indeterminate (IND), cardiac (CARD), and digestive/mixed (DIG/Mix), based on their clinical status. RESULTS: The analysis of total IgG reactivity at serum dilution 1:40 was an excellent approach to Chagas disease diagnosis (100% sensitivity and specificity). The analysis of IgG subclasses showed cross-reactivity, mainly with NI, VL, and ATL, at all selected serum dilutions. Based on the data analysis, the IND group displayed higher IgG3 levels and the DIG/Mix group presented higher levels of total IgG as compared with the IND and CARD groups. CONCLUSIONS: These findings demonstrated that methodology presents promising applicability in the analysis of anti-T. cruzi IgG reactivity for the differential diagnosis and evaluation of Chagas disease morbidity.

Twenty-eight Chagas disease patients (CD), 22 with the indeterminate clinical form (IND) and six with the cardiac or digestive form (CARD/DIG), were treated with benznidazole and underwent clinical and laboratorial analysis before (IND and CARD/DIG) and nine years after [patients after treatment (CDt), patients with the indeterminate clinical form at treatment onset (INDt) and with the cardiac or digestive form at treatment onset (CARD/DIGt)] treatment. The data demonstrate that 82.1% of CDt patients (23/28) remained clinically stable and 95.4% of the INDt (21/22) and 33.3% of the CARD/DIGt (2/6) patients showed unaltered physical and laboratorial examinations. The clinical evolution rate was 2%/year and was especially low in INDt patients (0.5%/year) relative to CARD/DIGt patients (7.4%/year). Positive haemoculture in treated patients was observed in 7.1% of the cases. None of the INDt (0/21) and 33.3% of the CARD/DIGt (2/6) patients displayed positive cultures. The PCR presented a positive rate significantly higher (85.2%, 23/27) than haemoculture and two samples from the same patient revealed the same result 57.7% of the patients. Conventional serology-ELISA on 16 paired samples remained positive in all individuals. Semi-quantitative ELISA highlighted significant decreases in reactivity, particularly in INDt relative to IND. Non-conventional serology-FC-ALTA-IgG, after treatment, showed positive results in all sera and 22 paired samples examined at seven and nine years after treatment, demonstrated significantly lower reactivity, particularly in INDt patients. This study was retrospective in nature, had a low number of samples and lacked an intrinsic control group, but the data corroborate other results found in the literature. The data also demonstrate that, even though a cure has not been detected in the none-treated patients, the benefits for clinical evolution were selectively observed in the group of INDt patients and did not occur for CARD/DIGt patients.