From rural negligence to the hope of the Goiás Association of Chagas Disease Carriers (AGPDC).
Those who are from the center know that there is a dichotomy in this introduction, because those who are from the center don’t experience the illnesses of the periphery, of the remote areas, of the jungle, of the countryside, of the areas where all we can do is keep praying to the last saints and caboclos we have left. I started this introduction because I’m from the countryside, I was born and spent my childhood and youth in a ranch on the edge of the ground and in a house made of adobe, using a toilet and always near the chicken coop, places where the barber, the vector that transmits Chagas’ disease, would find a home. The only thing missing was to finish the sentence – from the center-west – the countryside or, as my father used to say, mata-brava.
Until I was very young, I lived in this context, working with a hoe in the fields, only having what was planted on the table, thanks to Mother Earth. It’s natural to say that reading the world was part of my life, and it kept me away from reading the school desks, the abstract world of sums, decreases and, truth be told, divides I learned, because those of us who lived in the district were seen as animals, different animals, because those who went to school were different, distinguished pairs.
The Impact of Chagas Disease in Rural Areas
It’s worth remembering that the expanded concept of health promotion includes not only the absence of disease, but also living conditions, well-being, access to education, food, housing and a dignified life as a citizen, all of which was not available to me and which many people do not enjoy today.
My own condition was favorable to meeting the barber and being infected with Chagas Disease, a situation that has been passed down from generation to generation for over a hundred years.
We explain this context of a disease in which the state I was born in is endemic. There is a lived experience and the result of this digression is data that can give sustainability to my speeches and, with a lot of struggle and reflection, from a critical reference and with a little understanding of the historical, social, cultural and historical processes of health and other citizenship rights. In 2020, under the aegis and encouragement of specialist doctors from the Hospital das Clínicas, we began to format the Goiás Association of Chagas Disease Patients, AGPDC, but covid 19 interrupted and we resumed the project in 2023. After learning a little more about Chagas disease, I have to confess that I don’t like the term “carrier”, as I didn’t ask to carry anything, let alone a wound. The word “Chagas” doesn’t sound very good to people, to my neighbor and friends, it’s pejorative. After many challenges, struggles and incredible people who joined the project, on October 31, 2024, it was a historic day for the State of Goiás and for all people affected by Chagas Disease, because, on this special date, we officially inaugurated the AGPDC – Associação Goiana dos Portadores de Doença de Chagas, based in this District, in Goiás. Among the various prerogatives of this institution, the primary objective is to seek solutions so that all people affected by Chagas’ disease in the state of Goiás have access to diagnosis, treatment and a dignified quality of life, and this is written into the 1988 constitution.
AGPDC is born: Hope for those affected
AGPDC, already registered with a notary and in the final stages of acquiring a CNPJ, and with a curriculum of actions and participation in events, recently joined Socialsistems, an information management tool and cutting-edge technology for analyzing and correlating data. Socialsistems provides reports and suggestions that allow a broad and in-depth understanding of the demographic, social, economic, health, family and violence characteristics that affect the people affected in their respective territories.
We don’t just want diagnosis and treatment, we want much more. Many infected people live without housing, education, financial support and social justice.
In rare cases like my experience with Chagas disease, I was able to study, become a teacher, a writer, have information, treatment and enjoy the quality of life I had so long dreamed of.
The municipality of Alexânia has already institutionalized Law No. 1546, of June 23, 2021, which establishes the Day of Awareness and Coping with Chagas disease, but it has not come to fruition and the municipality has no agenda for Chagas disease, only here 4 people have died in 4 years and without access to treatment, on October 31, 5 more people tested positive.
Law No. 23,031 of October 14, 2024, which establishes the State Day of Awareness and Coping with Chagas Disease, was passed. We hope that our managers will be sensitized and put Chagas Disease on the agenda of their administrations.
Challenges and hopes for the future
In view of the above, AGPDC’s mission is to fight for the implementation of public policies, actions, diagnosis and access to treatment.
to adhere to the use of a data collection system in order to get to know and present our closest reality, to encourage a space for speech, from the point of view of those affected by the disease, with a free but serious and honest translation of the problems we experience and which do not cross borders. We knew that, from the outset, the challenge was to organize the group, to supply our thoughts with data translated by subjectivity and not the mere qualitative and quantitative condition of numbers.
Technology at the Service of Health: The Importance ofa Platform
Socialsistems is a system for registering and analyzing data in a dynamic format, which has offered a new perspective on the context of Chagas Disease and is a hope for resolving a historical problem, the negligence of the state and also of us, because, in a way, we have become accustomed to it and live in silence.
The AGPDC is already using a high-level technological mechanism that will be able to collaborate concretely in the implementation of public policies and programs to give visibility to the diseases and change this sad scenario.
