Health, Migration, and NTDs: An Anthropological View

Introduction

Health, migration, and NTDs: an anthropological view

Also called American trypanosomiasis, Chagas disease was first discovered by the clinician and scientist Carlos Justiniano Ribeiro Chagas in 1909 in Brazil, who identified a new species of flagellated microorganism that was to be found in the intestines of hematophagous insects, in the blood of various domestic animals, and in the blood of people. The parasite was called Trypanosoma cruzi, in honor of Professor Oswaldo Cruz (Araujo-Jorge et al. 2017). One hundred and eleven years later, on April 14, 2020, World Chagas Day was officially recognized and celebrated for the first time. The objective was to give visibility in the global health agenda to the challenges faced by people affected by Chagas disease. In the midst of the COVID-19 pandemic, the celebration of a neglected tropical disease was obviously obscured by more imminent concerns. This is the nature of neglected tropical diseases (NTDs); also referred to as silenced diseases.

“When we say that Chagas disease is a silent disease we are simply stating a fact: in most cases it is a disease that presents no suspicious signs or symptoms for several years […] until a heart or digestive dysfunction develops in its chronic stage. However, when we say that Chagas disease is a silenced disease we want to stress that there are those who wish to silence it” (Medecins Sans Frontier 2005, my emphasis).

Chagas disease is silenced because it is (or was once) a disease of poverty, and affects people who are not the main target of pharmaceutical research. It is also a disease prevalent in rural areas and often among indigenous communities, where silence is tied to a legacy of colonial domination, expropriation, and exclusion of indigenous people from national projects across Latin America. As Parker and Allen argue (2014:224) “it is mostly neglected people who are infected with neglected diseases.” The silence that engulfs Chagas as a neglected disease extends beyond its endemic context and affects people in non-endemic countries through migration. In non-endemic countries, the lack of knowledge of the disease by the medical profession, the precarious status of migrants, and the complexities of vertically transmitted Chagas shroud the disease with additional complications.

The World Health Organization recognizes that infectious diseases of poverty (another way to refer to NTDs) are intrinsically connected to structural violence (Farmer 2004). The terminology “Neglected Tropical Disease” is a legacy of colonialism, as these were associated with tropical colonies, exotic, remote, and not concerning Europeans. Renaming the infectious diseases of poverty aims to focus on the fact that these diseases are often a result of poverty and are not necessarily connected to a specific geographic location. However, the term “neglected tropical disease” is the more prevalent one, and its abbreviation NTD is widely used among researchers and public and private organizations dedicated to “end the neglect.”¹ The fact that the terminology “infectious diseases of poverty” did not gain traction within the various disciplines and organizations that deal with these diseases is a question worth pondering. It is a weighty (and still very much unresolved) colonial legacy that permeates all disciplines dealing with NTDs. The hierarchy of knowledge (with biomedicine at the apex and social sciences at the base), the structure and geographic location of donor and beneficiary organizations, the interactions between the development and implementation of research programs and strategies designed in international spheres and applied in remote local settings are some of the indications of the ongoing coloniality of NTDs. These are merely presented here as provocative thoughts that contextualize the broader field of NTD research and implementation.

In this collection, the term NTDs prevails over that of infectious diseases of poverty. However, the context within which these are studied reveals the critical perspectives presented by this volume (the contribution by Levin, Kreimer, and Jensen develops this point further). The focus on Chagas disease (as a neglected tropical disease) in non-endemic contexts within the Global North, and the centrality of (undocumented or precarious) migrant health in this issue bring to the fore the aim to problematize the legacy of intellectual as well as economic and political colonialism embedded in NTD research.

NTDs affect over one billion people globally and are responsible for significant morbidity, mortality, poverty, and social stigmatization. They affect predominantly those in disadvantaged situations: low-income countries, inadequate housing, and lack of access to clean water and sanitation. NTDs reproduce poverty and reduce economic productivity (Sun and Amon 2018). However, neglected tropical diseases are increasingly more prominent in the Global North, given the widening social gap. The main NTDs identified by WHO, zoonotic, or vector-born, are dengue, rabies, chikungunya, trachoma, Buruli ulcer, endemic treponematoses, leprosy, Chagas disease, African sleeping sickness, leishmaniasis, cysticercosis, dracunculiasis, echinococcosis, foodborne trematode infections, lymphatic filariasis, onchocerciasis, schistosomiasis, and soil-transmitted helminthiasis (WHO 2017).

In May 2014, the World Health Assembly called for NTDs to be incorporated into primary health-care services. NTDs were included in the Sustainable Development Goals to be eliminated by 2030. The World Health Organization recognizes that NTDs must be considered from an interdisciplinary perspective, with a strong focus on social and political determinants of health (WHO 2012). However, the majority of public health programs address vector control and the disease from an epidemiological perspective. In the context of migration, where the vector is not present, social factors become more prominent.

Chagas is no longer (if it ever was) the sole concern of the Global South. Public health systems must deal with the chronic consequences and vertical transmission of Chagas in the United States, Australia, Switzerland, Italy, and Spain, to name a few (Angheben et al. 2011; Gómez i Prat et al. 2019; Jackson et al. 2010; Posada et al. 2011).

Chagas in academic literature

The academic literature on Chagas disease is strongly dominated by biomedical approaches, focusing on vector control, diagnosis, and treatment (Alpern et al. 2017; Andrade et al. 2014; Gaspe et al. 2018; Pennington et al. 2017). In PLoS Neglected Tropical Diseases, Chagas disease is mostly addressed from a biomedical and biological perspective, focusing on treatment, symptomatology, and diagnosis. Even those articles with a focus on social concerns are shaped by research methodologies or writing styles akin to the natural sciences. This highlights the importance of this contribution, as an anthropological analysis of Chagas as a disease, but also as a social and political issue.

Additionally, literature on public health focuses on programs of vector control, diagnosis, and treatment analyzing the effectiveness of applied research (Alonso-Vega et al. 2013; De Urioste-Stone et al. 2014; Manne et al. 2013). These programs are often developed following medical or public health guidelines, which demand replicability, measurement of impact and accountability, and they do not always contemplate the political complexities of undocumented migrant communities.

Therefore, even within anthropological approaches, anthropologists of neglected tropical diseases find themselves contending with a strong biomedical influence in academic journals that publish on NTDs, and a lack of interests on NTDs in journals with a stronger social science profile. Bardosh (2014) and Bardosh (2018) argue that social science research on NTDs has itself a “neglected” status. An even less explored issue is that of NTDs generally, and Chagas particularly, in migratory contexts within non-endemic countries. The scarce (and precious) social science research conducted on this issue is scattered erratically in cross-disciplinary journals (Aguilar Lorenzana 2015; Blasco-Hernández et al. 2016; Di Girolamo et al. 2016; Ventura-Garcia et al. 2013), and contributes key insights into how Chagas complicates health concerns in migrant contexts, and vice versa, and how the precarious experiences of migration reduce people’s ability to focus on preventative health practices.

Chagas, precarity, and migration

This special edition aims to address people’s experiences with Chagas in migratory contexts. These experiences gain an additional layer of complexity to the problematic of Chagas in endemic countries, given the precarity of migrants. The importance of this special edition is the contribution of an anthropological lens on the experience of Chagas in migratory contexts in the Global North. Through an anthropological analysis, the authors aim to highlight the structural and political complexities of Chagas disease in non-endemic locations, which often include but exceed those of their endemic contexts. Additionally, these contributions analyze the experience of Chagas as more than an illness, as it is related to people’s socio-economic circumstances (past and present). These analyses focus predominantly on women’s experiences, given the nature of the Latin American migrant cohort, mostly seeking domestic employment.

This collection aims to address the neglected status of social science research on NTDs, in order to generate a discussion about the relation between Chagas and the precarious nature of the migratory experience in the Global North. The aim is to bring to the fore of anthropological debate key issues surrounding Chagas disease (also relevant for other NTD research): Chagas beyond endemic contexts, political barriers of access to health, migrant health, stigma, and discrimination of migrants as harbingers of disease, complex supply chains of hard-to-access medication, and health perceptions in precarious contexts. This special edition aims to unpack a cluster of interconnected concepts – precarity in migratory contexts, stigmas around disease, access barriers to health, neglected tropical diseases of poverty – that become entangled and complicate the efforts of institutions, governments, and individuals trying to develop programs to target NTDs in non-endemic contexts.

The authors raise questions pertaining to medical anthropology, migration, and public health, and the creation of scientific knowledge around Chagas: how is Chagas perceived in different migratory contexts? How does precarity impact on people’s health priorities around Chagas (as a chronic health condition and as a neglected tropical disease)? How do different host societies deal with their lack of understanding of Chagas as a neglected tropical disease? How is global scientific production about Chagas constructed? The issues raised by this special edition are not only pertinent to the study of Chagas disease, they concern neglected tropical disease more broadly and are fundamental to understanding the complexities of health perceptions and health-seeking behavior in migratory contexts more generally.

This special edition covers research concerning three Global North locations where there is a presence of Latin American migrants with Chagas disease, and where public health institutions have aimed to address its diagnosis and treatment: Spain, Switzerland, and the United States. These three federal countries relegate health organization and provision to the commune/canton/state. This means that the implementation of nation-wide screening programs, for example, gains an additional complication, as was the case in Switzerland. These three contexts present particular barriers for migrants and their health-seeking behavior. The articles by Colin Forsyth, Salvador Hernandez, Carmen Flores, Mario Roman, Maribel Nieto, Grecia Marquez, Juan Sequeira, Harry Sequeira, and Sheba Meymandi, and Alba Valdez Tah both illustrate the strong antagonism against Mexican migrants in the US and their often-undocumented status as well as the highly privatized health-care system, generate additional barriers and stigmas around Chagas disease and other health concerns of migrants. The presence of Chagas in the US is often framed as an imported disease brought by migrants; therefore, the contribution by Bernardo Moreno Peniche deals with a crucial theoretical issue about the political implications of categorizing a disease as endemic or non-endemic. This again goes to the core of the coloniality implied in NTDs and the resistance in global northern locations to consider the possibility of endemic transmissions, such as vertical transmission or blood donation. Elise Rapp’s article is also relevant in this respect, as it deals with the importance of addressing vertical transmission in non-endemic locations. It demonstrates how Switzerland is also a hostile country for migrants generally, and undocumented ones particularly. The language barrier (French in Geneva but German, Italian, and Romansch as other national languages) and the private nature of health care make access to health almost impossible for people who are unable to pay a private health insurance. Despite certain canton-specific safety networks, such as NGOs and cantonal health support in Geneva, many undocumented migrants do not know how to navigate the complex health-care scenario. Additionally, among health-care professionals, there is a lack of knowledge of Chagas disease making it difficult for people to receive the medical follow-ups necessary to manage the heart and digestive complications brought about by Chagas. Conversely, the article by Laia Ventura-Garcia, Joan Muela-Ribera and Àngel Martínez-Hernáez illustrates how the colonial relationship between Spain seems to have (arguably) positive implications for Latin American migrants (common language, a sense of visibility, and shared family connections between Spaniards and Latin Americans given multiple waves of migrations in both direction). Despite universal access to health, there are still barriers in Spain for undocumented Latin American migrants who have not received the sanitary card that is necessary to access the public health system. As a way of conclusion to the collection, and invitation for further thought on the epistemological context of Chagas knowledge, the contribution by Luciano G. Levin, Pablo R. Kreimer, and Pablo Jensen considered the production of scientific work on Chagas disease in different global contexts, tracing the epistemological trends on Chagas disease from a medical and epidemiological issue and shifting to a public health concern through programs that increasingly require attention to social contexts. The bibliometric analysis conducted by this paper gives the reader a critical and extensive analysis of the literature on Chagas disease in different global contexts, opening up the discussions presented throughout the collection and inviting further contemplation on the role of scientific knowledge on Chagas in endemic and non-endemic contexts.

These scenarios, described in detail by the contributors to this edition, are the backdrop to what is already a complex issue – health, migration, and neglected tropical diseases. We aim to break the silence in multiple ways: talk about Chagas within migrant groups, talk about Chagas in non-endemic contexts of the global north and talk about Chagas within anthropology, making a statement about the social and political elements of Chagas disease, and the importance of the role of social science in the analysis of health and migration.

Acknowledgements

I would like to thank all the contributors to this volume for showing interest in the topic and working hard to complete it.

Additional information

Notes on contributors

Marina Gold

Marina Gold is a researcher at the Mundo Sano Foundation, based in Argentina and Spain. The aim of the foundation is to generate field data on neglected tropical diseases in order to support the development of public health strategies to combat them. She has conducted research on Chagas in undocumented Latin American migrants in Geneva, Switzerland as well as in the role of midwives to address Chagas in Comapa, Guatemala. She is also an associated researcher at the Ethnology Institute at the University of Zurich.

Notes

1. One of many examples is the call by Uniting to Combat NTDs to end the neglect as a campaign slogan (https://endtheneglect.com/).