If asked about the start of my path in the field of epidemiology, I would not be able to specify an exact date. What I do know is that more than 12 years ago, I became curious to understand how diseases behave in populations, how they are distributed, why some people get sick and others don’t, and what decisions are (or are not) made based on that information.
It was not a planned path, far from it. I came to the world of public health and epidemiology driven by the desire to do something with real, tangible impact. I’ve always liked working in the field, but I was also attracted by that less visible part: data. What the data says, what it hides, what it allows us to anticipate.
During my first years in the National Ministry of Health, where I trained as an epidemiologist, I covered different topics, worked with different teams and learned a lot about surveillance systems. It was there that I began to see and understand more deeply the burden of under-reporting. Not only in Chagas disease, but also in other diseases or events. What is not recorded does not exist in the eyes of the system. And that invisibility can have consequences for planning, care and, above all, for people.
Later, when I was already working at Mundo Sano Foundation, the Chagas issue and, especially, congenital Chagas, took on a new dimension. I had the opportunity to see that there were mothers who did not know they had Chagas, with babies who did not receive a timely diagnosis, and with records that, again, were not reflecting what was really happening in the field.
To give a specific number, according to the last Boletín Epidemiológico Nacional sobre Chagas (1) [National Epidemiological Bulletin about Chagas], the loss to follow-up of suspected cases of congenital Chagas disease remains a significant problem, with approximately 75% of the cases not having completed follow-up in the last years. Behind every incomplete piece of data or every unreported case, there are postponed decisions and, consequently, violated rights.
I learned from epidemiological surveillance not to look the other way. I learned to search for missing data, to ask –sometimes awkward– questions, to review what appears to be “closed”, but is actually incomplete. I also learned that information systems are not neutral: they respond to priorities, resources, political decisions. And that our task is not only to record what happens, but also to make visible what is not being seen.
Working on Chagas disease is a great challenge. It is a silent disease, often stigmatized and marked by inequalities. There is a lot of ignorance, even within the health system. And that translates into a debt to the affected people. However, there is also progress. If a case is detected early, if a pregnant woman receives a diagnosis, if a child has access to appropriate treatment, some part of that machinery starts to work. It means that the record is no longer an isolated number but that has become concrete action.
Recording what happens so it can be changed. In some way, recording is also caring: no health policy is possible without reliable information. Because what is not recorded does not exist. And what does not exist, is not cared for, is not prevented or amended.
(1) Ministerio de Salud de la República Argentina, Dirección de Epidemiologia. (2025). Boletín Epidemiológico Nacional N°743, SE 6.