{"id":40037,"date":"2025-02-06T06:30:26","date_gmt":"2025-02-06T06:30:26","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmjgh\/?p=40037"},"modified":"2025-02-06T06:30:26","modified_gmt":"2025-02-06T06:30:26","slug":"confronting-the-neglect-and-normalization-of-chagas-disease-in-bolivia","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmjgh\/2025\/02\/06\/confronting-the-neglect-and-normalization-of-chagas-disease-in-bolivia\/","title":{"rendered":"Confronting the Neglect and Normalization of Chagas Disease in Bolivia"},"content":{"rendered":"

 <\/p>\n

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, \u201cthere\u2019s just not enough education on the disease\u201d and \u201cpeople don\u2019t know how to protect themselves from it.\u201d<\/p>\n

But, how do we know what people know, if we\u2019ve never asked them?<\/p>\n

In other words, why are we assuming that rural and indigenous peoples\u2014whom Chagas primarily affects\u2014are 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<\/em> are uneducated, we are only contributing to harmful victim-blaming, ignoring the root causes of Chagas, and perpetuating its title of a \u201cneglected\u201d tropical disease.<\/p>\n

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<\/em> (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.<\/p>\n

If not diagnosed and treated early, Chagas causes chronic heart and digestive problems in 40% <\/a>of cases, and can result in premature death. There are two medications\u2014benznidazole and nifurtimox\u2014that can have up to 100%<\/a> effectiveness (particularly for children treated in a timely manner), yet only an estimated 1%<\/a> of Chagas patients receive it. This isn\u2019t because of the people\u2019s \u201clack of education.\u201d This is a case of structural violence.<\/p>\n

The silver mines of Potos\u00ed 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<\/a> at the expense of the country\u2019s indigenous peoples who were brutally forced into labor regimes (mita<\/em><\/a>)<\/em> that not only drained Bolivia of its wealth, but left indigenous communities trapped in cycles of poverty<\/a> that persist to this day. Poverty, in turn, creates the conditions for Chagas to thrive, as vinchucas<\/em>\u2014the insects that transmit the disease\u2014live 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\u2014the direct results of colonial legacies that prioritized resource extraction and settler-colonial elites over indigenous peoples who were deemed as \u201cnon-human,\u201d 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, \u201cWe knew that the vinchuca<\/em> 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.\u201d<\/p>\n

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<\/a> 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 \u201chuman enough\u201d 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 \u201cunprofitable,\u201d are under produced and, with the lack of healthcare infrastructure, are under distributed.<\/p>\n

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 \u201cnormal,\u201d about having Chagas. \u201cWe all have it. It\u2019s normal,\u201d 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%<\/a> of the global funding dedicated to neglected tropical diseases. In every sense, Chagas is one of the most \u201cneglected\u201d of the \u201cneglected tropical diseases.\u201d However, this is not a result of the \u201cignorance\u201d or \u201clack of education\u201d of those affected, but a direct consequence of systems of oppression and violence rooted in colonialism.<\/p>\n

 <\/p>\n

Author:<\/strong> Sara Habibipour is a Bachelor of Science candidate in Microbiology, Immunology, and Molecular Genetics at the University of California, Los Angeles (UCLA).<\/p>\n

Competing interest:<\/strong> None<\/p>\n

Handling Editor:<\/strong> Neha Faruqui<\/p>\n","protected":false},"excerpt":{"rendered":"

  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, \u201cthere\u2019s just not enough education on the disease\u201d and \u201cpeople don\u2019t know how to protect themselves from it.\u201d But, how do we know what people know, […]<\/p>\n

Read More…<\/a><\/p>\n","protected":false},"author":402,"featured_media":39969,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[398],"tags":[441],"class_list":["post-40037","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-infectious-diseases","tag-chagas-disease"],"yoast_head":"\nConfronting the Neglect and Normalization of Chagas Disease in Bolivia - BMJ Global Health blog<\/title>\n<meta name=\"description\" content=\"This blog discusses the complex and structural causes of Chagas disease in Bolivia which lead to inequities\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/blogs.bmj.com\/bmjgh\/2025\/02\/06\/confronting-the-neglect-and-normalization-of-chagas-disease-in-bolivia\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Confronting the Neglect and Normalization of Chagas Disease in Bolivia - 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