When speaking with American and Bolivian doctors, global health students, and public health advocates alike about the persistence of Chagas disease in Bolivia, I frequently hear statements like, “there’s just not enough education on the disease” and “people don’t know how to protect themselves from it.”

But, how do we know what people know, if we’ve never asked them?

In other words, why are we assuming that rural and indigenous peoples—whom Chagas primarily affects—are simply uneducated about the disease, when the root of its persistence lies in systemic neglect? While education initiatives are key, by continuing with the idea that marginalized peoples suffer from diseases of poverty because they are uneducated, we are only contributing to harmful victim-blaming, ignoring the root causes of Chagas, and perpetuating its title of a “neglected” tropical disease.

So, I took this question to Palacios, Santa Cruz, Bolivia, where I spoke with over 40 people with Chagas disease from 6 surrounding rural communities. Nearly everyone I spoke with understood that Chagas is transmitted via the vinchuca (triatomine) bugs. They learned this either from their parents while growing up, from educational seminars at the local clinic (Centro Medico Susan Hou), or upon being diagnosed later in life. Many mothers who were aware of their Chagas-positive status also knew the disease could be passed congenitally to their children. However, most of these mothers remained untreated, and their children largely untested. Among the people I spoke with, only one person had received treatment while accessing care in the city. No one else knew that Chagas disease was treatable.

If not diagnosed and treated early, Chagas causes chronic heart and digestive problems in 40% of cases, and can result in premature death. There are two medications—benznidazole and nifurtimox—that can have up to 100% effectiveness (particularly for children treated in a timely manner), yet only an estimated 1% of Chagas patients receive it. This isn’t because of the people’s “lack of education.” This is a case of structural violence.

The silver mines of Potosí once made Bolivia one of the richest places in the world. However, its natural wealth became exploited by the Spanish Empire between the 16th and 19th centuries at the expense of the country’s indigenous peoples who were brutally forced into labor regimes (mita) that not only drained Bolivia of its wealth, but left indigenous communities trapped in cycles of poverty that persist to this day. Poverty, in turn, creates the conditions for Chagas to thrive, as vinchucas—the insects that transmit the disease—live in mud walls and thatched roofs, common in the homes of impoverished rural communities. These communities, largely composed of indigenous peoples, face severely depleted healthcare infrastructure with few clinics, medical personnel, or resources to diagnose and treat Chagas—the direct results of colonial legacies that prioritized resource extraction and settler-colonial elites over indigenous peoples who were deemed as “non-human,” eventually leaving them not only more susceptible to Chagas, but actively and systematically excluded from the basic resources that are scientifically present to fight it. As Percy, a man I spoke with, said, “We knew that the vinchuca spread Chagas. My dad taught us to kill them when we were kids. But we were poor. We grew up in a house of mud and thatch. There was no other way to live. So now we have Chagas.”

But, these dehumanizing systems of oppression are not just relevant to the past, they continue to manifest today through the pharmaceutical sector, which has made clear that it does not have much interest in financing therapeutics against Chagas disease, funding new research for the development of improved diagnostics, etc. This stems back to who is deemed “human enough” to receive the benefits of modern medicine. Because Chagas disease primarily affects those who live in poverty, pharmaceutical companies expect little financial return on diagnostics and treatments created for Chagas. Thus, they are deemed “unprofitable,” are under produced and, with the lack of healthcare infrastructure, are under distributed.

Due to the lack of availability of Chagas treatments in many rural settings, patients are not offered it and are thus left to believe that they live with an incurable condition. But, many people whom I spoke with said that they feel “normal,” about having Chagas. “We all have it. It’s normal,” commented Elena. These sentiments create a sense of normalization of the disease within affected communities, compounded by the neglect it faces on the global health stage. In fact, from 2009-2018, Chagas disease research only received 0.67% of the global funding dedicated to neglected tropical diseases. In every sense, Chagas is one of the most “neglected” of the “neglected tropical diseases.” However, this is not a result of the “ignorance” or “lack of education” of those affected, but a direct consequence of systems of oppression and violence rooted in colonialism.

Author: Sara Habibipour is a Bachelor of Science candidate in Microbiology, Immunology, and Molecular Genetics at the University of California, Los Angeles (UCLA).

Competing interest: None

Handling Editor: Neha Faruqui