The Kiss of Death
Joseph William Bastien
Chagas’ disease has become one of the major public-health problems in Latin America. Current estimates are that sixteen to eighteen million people are infected. Caused by a flagellate protozoa carried to humans via the bite of the triatomine or vinchuca bug, it is locally referred to as the “kissing bug” because of its tendency to lodge on victims’ faces during sleep. The protozoa enters neuron tissues in the heart and other organs and causes death by irreversible cardiac and gastrointestinal lesions in thirty to forty percent of all cases, usually lying “dormant” until the debilitating chronic phase during the human host’s mid-life. Because of the long dormant phase, it has generally gone unrecognized, with chronic symptoms often attributed to other causes. Originally preying on forest animals, the vinchuca bug has infested the impoverished housing of displaced Andean migrants as forest lands and animals have been destroyed in South America. Although there is no cure for the chronic stage, the disease vectors can be controlled and possibly eliminated through improved hygiene and living conditions. No longer exclusive to Latin America, Chagas’ disease is spreading to North America and Europe with the migration of infected bugs, hosts, transfusions, and transplant organs.
The Kiss of Death is a thorough study of Chagas’ disease with analysis of research involving epidemiology, entomology, parasitology, pathology, and immunology. It emphasizes how humans have created environmental and social conditions for its spread; how Andeans have adapted culturally to the disease with changing conceptions of the body, adaptations to rituals, and herbal medicines; what factors are necessary to design a successful intervention project; and why understanding cultural belief systems is critical to prevention programs. The Kiss of Death also shows that traditional cultural forms can provide valuable strategies for dealing with disease prevention and treatment. This first book-length treatment in English reveals that an examination of Chagas’ disease is a warning of what happens as a result of environmental destruction and is an example of what might be done to prevent such tragedies in other parts of the world.
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Joseph William Bastien
THE KISS OF DEATH
Chagas’ Disease in the Americas
For my father
WILLIAM JOSEPH BASTIEN
1887-1964
who spent the twilight of his life crippled in bed with a chronic disease that is now curable.
He and those with Chagas’ disease are the inspiration of this book.
Acknowledgments
I am deeply indebted to the following people and institutions.
George Stewart of the University of Texas at Arlington taught me epidemiology, parasitology, and immunology. He contributed greatly to this book. Dorothy Ahlstrom, Linda Gregg, Lori Lee, Kathy Rowe, Jane Nicol, Brad Watson, and Sharon Young helped in the preparation of this manuscript. Librarians John Dillard and Trudy de Goede of the University of Texas at Arlington, Karen Harken of the University of Texas Southwestern Medical Center, and Regina Lee at the University of North Texas Health Science Center endlessly pursued articles and obscure references. The University of Texas at Arlington gave me sabbatical leave to prepare this manuscript and also provided funding through a research grant for summer research. The Wenner-Gren Fund also provided me with funding to do research in Bolivia. The Fulbright-Hayes Foundation provided me with support for three months in Bolivia as a scholar/researcher in residence.
Andy Arata and Robert J. Tonn of Vector Biology and Control Project in Arlington, Virginia, provided me with my first information about Chagas’ disease when I assisted them in planning the Bolivian Chagas Control Project. Joel Kuritsky of the Centers for Disease Control in Atlanta, Georgia, invited me to Bolivia to study Chagas’ disease and greatly assisted me. More than anyone, Kuritsky recognized the problem of Chagas’ disease in Bolivia and coordinated experts to help prevent the spread of this disease. These experts included Stephen Ault, Ralph Bryan, Fanor Balderrama, Hernan Bermudez, Jesse Hobbs, Robert Klein, and Rodrigo Zeledón. These scientists also helped me with information about vector control.
I am especially grateful to Ruth Sensano, director of the Cardenal Maurer (CM) project in Sucre. Sensano shared with me the planning and design of her successful Chagas’ control project in the Department of Chuquisaca. She also invited me to accompany Abraham Jemio Alarico and Ariel Sempertegui on an evaluation study of communities where Proyecto Britanico Cardenal Maurer (PBCM) had constructed houses. Alarico, an epidemiologist from the Ministerio de Prevision Socialy Salud Pública (MPSSP), and Sempertegui, a health worker from the Programa de Coordinación de Supervivencia Infantil Organizaciones Privadas Voluntarias (PROCOSI), an organization of nongovernmental projects that receives money from USAID and contributes to PBCM, instructed me about vinchucas, Chagas’ control, insecticides, and peasant behavior. Sempertegui also gave me a copy of his organization’s evaluation study. Dr. Mario Torres assisted me with his vast clinical knowledge of chronic Chagas’ colonopathy.
Fanor Balderrama and Hernan Bermúdez directed the Bolivian Secretariat of Health/Community and Child Health Project (SOH/CCH) Chagas’ control projects in the Cochabamba Valley of Bolivia. They assisted me by providing literature and allowing me to visit the community of Aramasi. Simon Delgadillo and Feliciano Rodriguez, community leaders of Aramasi, assisted me in this evaluation. In the Department of Tarija, Dr. Roberto Márquez showed me the results of a Chagas’ control project that he had directed under the Bolivian Secretariat of Health. Dr. Ciro Figaroa provided me with his research findings on the parasite and vector. Robert Tonn and Buzz McHenry allowed me to visit Las Lajas, where SOH/CCH was sponsoring a housing project.
The French/Bolivian Institute for High Altitude Biology (IBBA) conducts parasitological studies concerning Chagas’ disease. I spent many days talking with them and am indebted to the following scientists for increasing my knowledge of Trypanosoma cruzi and Triatoma infestans: S.F. Breniere, C. Camacho, R. Carrasco, M. Tibayrenc, P. Braquemond, H. Miguez, L. Echalar, S. Revollo, T. Ampuero, and J.P. Dedet.
Dr. Gerardo Antezana, director of Chagas’ Research Institute in Sucre, shared with me his research on chronic chagasic cardiopathology. Staff of the Gastroinstestinal Institute in Sucre also shared hospital records with me concerning cases of chronic esophageal and colon Chagas.
José Beltrán informed me about and allowed me to participate in the Tarija Chagas’ control project. He also illustrated how education about Chagas’ disease should be done. Community health workers Edwin Ayala and Lourdes Elizabeth Anyazgo instructed me about their work in Chagas’ control. Ronald Gutiérrez informed me about the political economy of Chagas’ control.
Jaime Zalles provided me with names of medicinal plants and natural remedies used in the treatment of Chagas’ disease. Oscar Velasco, M.D., contributed significantly to Chapter 10 and also instructed me concerning the integration of ethnomedicine and biomedicine. Dr. Oscar Velasco also shared with me his knowledge of Chagas’ disease among patients of the Department of Potosi, and he introduced me to the cultural context model of health projects discussed in this book. Dr. Evaristo Mayda explained to me how Quechua curanderos deal with Chagas’ disease, and he let me observe a system of integrating biomedicine and ethnomedicine in the treatment of this disease in the valley of Cochabamba. Dr. Mayda also contributed to the design of a culture context model for health care. Antonio Prieto provided economic solutions to productivity problems in rural Bolivia. Dr. Coco Velasco assisted me throughout with his insights and encouragement. David Ratermann provided me with information about economic and social problems in Bolivia. Roberto Melegrano presented alternative housing designs. Javier Al
bo, Jose Juan Alva, and Silverio Gonzales assisted in the anthropological and social analysis.
Paul Regalsky of CENDA and Kevin Healey of the Interamerican Foundation provided me with assistance for two summers. Wenner-Gren, Fulbright-Hayes, the National Institute of Health, Texas Christian University, the University of Texas, the United States Agency for International Development, and the Interamerican Foundation provided me with funding for this research.
Dr. Pedro Jáuregui Tapia allowed me to visit his patients with chronic Chagas’ disease and explained to me their medical histories. Dr. Johnny Mendez instructed me about megacolon symptoms of Chagas’ disease and how it can be treated; he also provided epidemiological information for the Department of Chuquisaca. Dr. Ben Termini, cardiologist in Arlington, Texas, provided me with information about heart disease, and he sponsored a research assistant for this project. Manfred Reinecke, chemist at Texas Christian University, Bill Mahler, botanist at Southern Methodist University, and William Richardson, pathologist at the University of California at Riverside, assisted in the molecular analyses of plants being used to treat Chagas’ disease; and, through a collaborative research grant with them, I was able to conduct fieldwork in Bolivia for five consecutive summers.
John Donahue and Chris Greenway reviewed the manuscript and provided excellent suggestions to improve it. I am especially grateful to Jeffrey Grathwohl, director of The University of Utah Press. Finally, John V. Murra, Leighton Hazzlehurst, Frank Young, and David Davidson, my professors at Cornell University during graduate studies, instructed me in research.
I thank you.
Introduction
Trypanosoma cruzi is as potentially destructive to human beings as is a nuclear bomb, yet it is so minuscule that it largely goes unnoticed. Trypanosoma cruzi (T. cruzi) causes what is known as American trypanosomiasis, or Chagas’ disease. The first time that I saw T. cruzi was June 6, 1991, in Cochabamba, Bolivia. I recorded the following notes:
Yesterday, I saw T. cruzi under the electronic microscope. They clustered together, like strands of tangled wool, and were wiggling violently, like so many minuscule hydra monsters, trying to break free with their tentacles and attack you. One broke free and swam toward me…
Hernan Bermudez, laboratory technician, then looked into the microscope and exclaimed “El Asesino!” [“The Assassin!”]. I felt thrilled to be face to face with the parasite that was infecting millions of people in Latin America, that has spread so rapidly throughout Latin America, and that can multiply to millions of offspring in the human body.
The sighting of T. cruzi did not generate hatred but awe and respect. It began a lasting relationship.
T. cruzi infects 18 million people in Latin America and is the major public health problem for development in Latin America, because it debilitates and kills adults during their prime of life (World Health Organization 1985, 1991, 1994, 1996). The Pan American Health Organization has identified Chagas’ disease as the most important parasitic disease in Latin America and the major cause of myocardial illness (PAHO 1984). This flagellate protozoan parasite travels to humans through the bite of triatomine bugs—a particular order of sucking insects—entering neuron tissues of the heart and other organs and causing irreversible cardiac and gastrointestinal tract lesions in 30 to 40 percent of the cases. T. cruzi migrates by means of infected bugs, animals, humans, blood transfusions, and organ transplants. Currently, there is no cure for the chronic stage of Chagas’ disease, but T. cruzi can be controlled through improved housing and hygiene. Named after Carlos Chagas, who discovered T. cruzi in Brazil in 1909, Chagas’ disease has spread throughout Latin America and the Southwestern United States (see Figure 1).
Figure 1.
Geographic distribution of Chagas’ disease in Latin America. Although it is still difficult to form an accurate picture of the geographic distribution and prevalence of Chagas’ disease, among an estimated total population in the endemic countries of 360 million people (excluding Mexico and Nicaragua, for which adequate data are not available), at least 90 million persons (25 percent) are at risk of infection, and from 16 to 18 million people are infected. (World Health Organization 1991:27). (See Appendices 6 and 7.)
This book concerns Chagas’ disease in Bolivia, where infection rates are higher than in any other Latin American country (SOH/CCH 1994). It shows how human beings have created environmental and social contexts for the spread of Chagas’ disease and addresses such questions as these: Can humans be as effective in eliminating such diseases as they are in promulgating them? What are successful prevention projects and what are not? What factors are necessary to design a successful intervention project? Further, it shows how Andeans have culturally adapted to the spread of the disease and illustrates why understanding cultural belief systems is critical to the success of prevention programs.
Surprisingly, many Bolivians are unaware of Chagas’ disease and rarely suspect it as the cause of death. They attribute its symptoms to other causes such as heart disease, volvulus, improper foods, and fatigue. While it is unnecessary that most individuals understand Chagas’ disease from a biomedical perspective, health educators need to translate scientific information about the disease into culturally appropriate categories that are sensitive to indigenous values, traditions, and motivations. To do this, health educators need to integrate the biomedical knowledge of Chagas’ disease with the ethnomedical practices of Andeans.
Chagas’ disease has received little attention and funding of research, treatment, and prevention measures, perhaps because of who gets itpoor, illiterate, indigenous Andean peasants. This lack of attention is also a result of the disease’s latent periods in the human body (see Figure 8). Frequently, T. cruzi lies dormant for years until manifesting itself in the critically debilitating chronic state. Peasants seldom connect bites from vinchuca bugs to heart disease, so the disease spread by the bite goes undetected at early, treatable stages.
Chagas’ latent states and mobility relate it to other slow-acting killersother epidemics and diseases that cross boundaries. Infected insects, humans, and animals allow T. cruzi to travel swiftly and to enter homes unannounced to its hosts. In this, Chagas’ disease shares certain features with other diseases, such as AIDS. It is environmentally driven, as is AIDS. Similar “new” diseases have emerged from the savannas of eastern Bolivia (Hemorrhagic Fever), the rainforests of northern Zaire (Ebola virus), a Navajo reservation in the Four Corners region of the western United States (Hantavirus), and the urban poverty of the south Bronx (see Garret 1994). Yet, Chagas’ disease is ancient. In this case, it is a parasitic disease encouraged by environmental changes that bring T. cruzi, vinchucas, and humans into close contact. Humans destroy natural animal hosts for this parasite and habitats for its vector bug. As a result, parasite and vector have moved to humans. Parallels also can be found with Lyme disease. Suburban housing developments encroach on forest areas where humans come into contact with rodents, especially white-footed deer mice. These rodents host Ixodid ticks, vectors of Borrelia burgdorferi, a spirochete that causes Lyme disease (see Spielman et al. 1985; Burgdorfer et al. 1985).
Our awakening to these disease agents is a challenge of the coming millennium. To catch a glimpse of diseases to come, this book details an epidemic battle in Bolivia, a seemingly remote country, and shows how to win it. It provides suggestions for community members, health workers, and social scientists on how to stop Chagas’ disease. It is also important to examine factors of the disease’s spread in Bolivia to prevent this from happening elsewhere.
Andeans have excellent ways of dealing with native diseases, but they also need anthropologists with cultural sensitivity and doctors with biomedical expertise to help them adapt to potential epidemics. These epidemics are in part phenomena of the late twentieth century. They are aided by overpopulation, massive migrations, urbanization, widespread impoverishment, destruction of the rainforests, and erosion of valuable soil, among other factors. Curtailing Chagas’ disease calls for publ
ic policy changes to stop the above practices, to increase research and international assistance, and to recognize and utilize indigenous medical systems in its control.
To what extent does a personal agenda interfere with objective research? It is difficult for medical anthropologists to espouse scientific positivism when they are studying traditional medical systems based on premises other than positivism, such as divination, spirits, balances, social relationships, and cultural continuity. Often there are no ways to prove why things work in a culture; the fact can only be noted that they do. Consequently, analyses and interpretations of medical anthropologists are personal and to some degree subjective.
What gives credibility to anthropologists’ interpretations is their fieldwork and their data. The following explains some of the reasons why I argue throughout this book for an understanding of Andean ethnomedicine and a culturally sensitive approach to Chagas’ control in Bolivia. This book results from thirty-four years of experience, research, and fieldwork in Bolivia, beginning in 1963 when I first arrived as a Maryknoll priest and worked for six years among the Aymaras of the Altiplano (a plateau 12,500 feet high). I learned the Aymara and Spanish languages. After certain misgivings about missionization, I left the priesthood in 1969 and studied anthropology and the Quechua language at Cornell University to learn about Andean culture. In 1971 I married Judy Wagner and we returned to Bolivia to live with the Kallawaya people, only this time to participate in their rituals and to study how Andean religion has enabled these people to adapt to sickness. Their rituals were symbolic and spiritual processes of dealing with Western diseases (typhoid fever, septicemia, and heart disease) and cultural illnesses (chullpa usu, liquichado, cólico miserere), to name a few. This resulted in my first book, Mountain of the Condor: Metaphor and Ritual in an Andean Ayllu (Bastien 1978). I had become aware of the importance of Andean rituals in the society’s health maintenance and that the biology of disease is perceived differently by these people.
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