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.

Que no tengan miedo de nosotros:el Chagas según los propios protagonistas / Não tenham medo de nós: a doença de Chagas segundo os protagonistas / Do not be afraid of us: Chagas disease as explained by people affected by it

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...