I next studied Kallawaya herbalists to learn about their uses of medicinal plants and how these could be used with biomedicine. Kallawayas employ about a thousand medicinal plants and are renowned throughout Argentina, Bolivia, Peru, and Chile as very skilled herbalists. This research resulted in Healers of the Andes: Kallawaya Herbalists and Their Medicinal Plants (Bastien 1987). I published an herbal manual in Spanish for peasants that was used for training community health workers in the Department of Oruro, Bolivia (Bastien 1983). I returned to Bolivia almost every year to do research.[1]
By 1980, I again felt the missionary’s impulse, not to evangelize but to argue for the inclusion of Andean traditional medicine, especially herbal medicines, rituals, and curanderos, into national and international health programs. I became an advisor to the National Secretariat of Health and the United States Agency of International Development on the integration of ethnomedicine and community health workers into primary health care programs.[2]
A more recent endeavor to integrate both types of medicine has been my collaborative research with chemists and pathologists in the testing of Kallawaya-Bolivian medicinal plants for curing AIDS, cancer, Chagas’ disease, and tuberculosis. The results are significant, with certain plants being protease inhibitors for AIDS, and others curing cancer and tuberculosis (Bastien et al. 1990, 1994, 1996). Kallawaya plant medicines also show promise as cures for Chagas’ disease. Scientists at the University of Antofagasta, Chile, are examining these plants.
Bolivian and international health personnel are beginning to integrate ethnomedicine and biomedicine in Bolivia, as I discuss in Drum and Stethoscope: Integrating Ethnomedicine and Biomedicine in Bolivia (Bastien 1992). Doctors, nurses, and project workers work with shamans, midwives, and community health workers in joint clinics. Associations of community health workers, midwives, and herbalists negotiate with doctors and nurses. The National Secretariat of Health coordinates both types of medicine, including providing staffed positions in ethnomedicine. State-run pharmacies stock and sell herbal medicines. This recognition and respect of Andean traditional medicine is encouraging; however, the current hegemony of biomedical medicine, propelled by pharmaceutical and insurance companies, medical associations, and privatization, essentially pits capitalist entrepreneurs against ethnic curanderos and shamans in what becomes for the latter a losing battle.
Kiss of Death’s call for activism is unusual in a scholarly text, but I feel it is appropriate if it helps lead to the creation of prevention programs. Western medical ethics has come to address the manner of distributing resources that affect the maintenance or restoration of health as a moral problem (see Lieban 1990:227). The pattern of allocating resources basic to health and survival raises serious ethical issues in light of the principle of distributive justice, defined as “the justified distribution of benefits and burdens in society” (Beauchamp and Childress 1983:184). Does distribution of resources for combatting Chagas’ disease involve a conflict between the perceived higher valuation of certain communities over others, males over females, adults over children, and wealthier countries over poorer countries?
Because Chagas’ control projects are expensive and involve only a small percentage of communities in Bolivia, an evaluation of their effectiveness as pilot projects is important. For this reason, I concentrate on two pilot projects in the Departments of Chuquisaca and Tarija. The Proyecto Británico-Cardenal Mauer (PBCM) project in the Department of Chuquisaca was considered a successful Chagas’ control project in 1991 by the National Chagas’ Control Committee, which recommended it as a model for other projects throughout Bolivia. It provided a primary health care infrastructure into which Chagas’ control was included. Ruth Sensano organized this infrastructure. The Tarija project stands out for its education of the local populace about Chagas’ disease. José Beltran is the leading educator in this project. Sensano and Beltran are highlighted in these projects because they illustrate what individual Bolivians are doing. These projects serve to help create an improved model that reaches more people more economically and within the cultural context of the community.
I observed other projects, which were heavily funded, hastily done, and had limited effect on Chagas’ control. These projects concentrated on new houses and insecticides, measures that are not affordable and sustainable over time. Insecticides have become too expensive for most communities without government subsidies, which have been discontinued. The pilot nature of these projects failed because they never presented a model to follow. This book assesses the justice of the allocation of health resources in regard to Chagas’ disease. Moreover, it suggests alternative solutions to the problem of providing more people with the means to prevent Chagas’ disease.
Personal Awareness of Chagas’ Disease
Chagas’ disease first became a major health concern in Bolivia in 1991. Until then, it had been a “silent killer” of millions of Bolivians. After twenty years of fieldwork, I first learned about the disease in 1984 when a doctor/epidemiologist and I were visiting Cocapata, a Quechua community, located between snow-crested mountains to the west and the Amazon to the east. We lodged in a peasant’s hut of adobe and thatch and slept on llama skins covering the dirt floor. Even though insects bit me, I slept through the night. As the sun came through the tiny window, I arose and asked my companion how he slept.
“I didn’t sleep at all,” he replied. When I asked why, he continued. “I refused to sleep. I chased vinchucas from my body. I didn’t want them to bite me!” When I asked what vinchucas were, he told me that they cause Chagas’ disease. He was not afraid of malaria and syphilis, but he dreaded Chagas’ disease. He explained what this disease was, and, for the first time in my life, I questioned the potential price of a good night’s sleep. Having lived years in peasants’ huts, I realized that I had long been at risk and wondered why no one had advised me about Chagas’ disease. Even today, Chagas’ disease remains unknown to many educated people and doctors throughout the world. Tropical diseases in impoverished countries receive little recognition and research, primarily because biomedical technology and pharmaceutical companies concentrate on wealthier clientele in temperate zones of industrial countries. The doctor’s final comments were, “Chagas’ disease is a poverty-driven disease.”
Once I began looking for Chagas’ disease, I found it throughout Bolivia. When I was researching Kallawaya herbalists outside of Charazani, Bolivia, they reported increased mal de corazon (heart problems) and muerto subito (sudden death) among their peasants, which seemed strange to them. Andeans living at high altitudes are noted for their strong hearts as well as increased lung capacity. Acute respiratory diseases are major diseases in higher altitudes. Peasants complained of fatigue, somewhat unusual for people accustomed to working above 9,750 feet (3,000 m.). I suspected that Kallawayas were dying of Chagas’ disease, and, not surprisingly, as I later learned, the Kallawaya region is an endemic area of Chagas’ disease.
When I interviewed Kallawaya herbalists about local diseases and plant uses, I found no direct references to Chagas’ disease. This is not unusual, however, because the symptoms of Chagas’ disease are varied and diffuse. I suspected that they were treating the disease’s symptoms, such as fevers, intestinal disorders, and heart problems. One local herbalist, Florentino Alvarez, taught me herbal curing (see Bastien 1987a:9-10). When I met him in 1979 he was paralyzed from a stroke and hardly able to walk and talk. I massaged his legs, gave him vitamins, and helped him along with crutches. As he slowly recovered, he showed me some plants and explained how they were used. Florentino Alvarez died in 1981, of unknown causes, perhaps from Chagas’ disease.
The full impact of Chagas’ disease struck me in November 1990 when I attended a planning session for Chagas’ control in Bolivia. Earlier that year, Paul Hartenberger of the United States Agency for International Development (USAID) and Joel Kuritsky of the Centers for Disease Control (CDC) asked Robert Gelbard, U.S. ambassador to Bolivia, to request monies from President G
eorge Bush for prevention of Chagas’ disease in Bolivia. Although the Ministry of Health in Bolivia had been granted $20 million for a child survival program from 1989 to 1994, no monies had been allocated for Chagas’ control. Gelbard asked the newly inaugurated president of Bolivia, Jaime Paz Zamora, to request monies from President Bush when he visited the White House later that year. Bush granted one million dollars to immediately begin a Chagas’ campaign in Bolivia. Later, several million more dollars were added to fund the SOH/CCH Chagas’ control pilot projects.
Kuritsky convened world experts on Chagas’ disease to meet in La Paz, Bolivia, in November 1990 to design a Chagas’ program. He invited me to assist in regard to cultural and social aspects of Chagas’ disease and prevention. After five days of participation in these meetings, I learned about the disease’s epidemic proportions, problems in prevention, and complex nature. Philip Marsden shared with me details of how he had stopped its spread in parts of Brazil. Andy Arata and Bob Tonn of Vector Biology and Control Project (VBC) convinced me that vector control of Chagas’ disease is possible with insecticides and the improvement of houses. Hartenberger, Kuritsky, and Charles Lewellyn led a group of Bolivian epidemiologists, public health workers, and social scientists into accepting the challenge to eradicate Chagas’ disease in Bolivia. War had been declared against the disease, and control of Chagas’ disease was made an important component of the USAID Child Survival Program in Bolivia (CCH), which had a joint program with Secretariat Nacional de Salud (SNS) (see SOH/CCH 1994).[3] We left the workshop with T-shirts and buttons emblazoned with the crossed-circle stamping out an ugly vinchuca bug.
I returned to Bolivia during the summers of 1992, 1994, 1995, and 1997 to observe projects of SOH/CCH that included building new houses and improving hygiene as ways to prevent Chagas’ disease. Their success was limited to the degree that they used education, community participation, cultural sensitivity, and employment of native economic systems. More than 3,000 houses were built by project monies and peasant labor. I observed, however, that building new houses was not economically feasible for the majority of Bolivians, and that people generally were not practicing housing hygiene. As one example, in Aramasi, Department of Cochabamba, peasants resisted improving their houses because they thought that once the houses were improved they would be taken from them. This problem could be confronted by the education and preparation of community members. Another concern was that it is easier to kill bugs with insecticides (the technological quick fix) than to get peasants to maintain their houses and practice housing hygiene. This problem required being culturally and socially sensitive towards peasants, educating them to participate wholeheartedly in Chagas’ control, and assisting them in the maintenance of this control. Pro-Habitat of Bolivia designed posters and videos towards these ends. This book presents some of these successful strategies to prevent Chagas’ disease.
Review of the Literature
This book contributes to scholarly research by being the only text in English that covers Chagas’ disease in a comprehensive manner. Other monographs concentrate on specific issues; for example, Control of Chagas’ Disease, published in 1991 by the World Health Organization, contains information on epidemiology and vector control. An evaluation study, Chagas Disease in Bolivia: The Work of the SOH/CCH Chagas Control Pilot Program, 1994, describes the results of housing improvement by the national control program in Bolivia.
A landmark study in Spanish, La Casa Enferma: Sociología de la Enfermedad de Chagas by Roberto Briceño-León, 1990, centers upon understanding social processes and human behavior that bring into contact humans, triatomine vectors, T. cruzi, and Chagas’ disease. Briceño’s book provides an analysis of a housing improvement project in Venezuela that served as a guide for the Bolivian control project.
Chagas’ Disease and the Nervous System, published by the Pan American Health Organization in 1994, covers the pathogenesis of Chagas’ disease and supports the theory that morbidity in Chagas’ disease results from misdirected effects of the humoral and cellular immune responses in infected patients, induced by a breakdown of self-tolerance. The involvement of autoimmune mechanisms in the pathogenesis of Chagas’ disease compares it in some ways with AIDS; hopefully, more research on the role of the immune system in both diseases will provide some solutions.
Kiss of Death incorporates findings from these books into an interdisciplinary study that looks at the broader picture of the relationship of Bolivians to this disease. It highlights how they culturally adapt to the disease. As one illustration, when I questioned herbalists about Chagas’ disease, many had not heard about it. They complained about vinchucas biting them at night but had no idea that these trumpet-nosed blood-sucking bugs were bearers of a deadly parasite. However, some herbalists recommended burning eucalyptus leaves to drive out vinchucas. This and other ways that natives have adapted to disease constitute important knowledge. Kiss of Death provides this information.
As an anthropologist, I have learned to deal with the unusual and threatening in a way that is understandable; this is my perspective throughout the book, one that tries to make the scientific knowledge understandable and the human suffering bearable and redeemable. One premise of this book is that it is necessary to relate the microbiology of Chagas’ disease to environmental, economic, political, social, and cultural factors in order to prevent Chagas’ disease. There is no quick fix, such as spraying with insecticides or employing vaccinations. The challenge of Chagas’ disease requires an interdisciplinary approach, discussed in the concluding chapter.
Frequently, I have been told by doctors that the disease is not a problem in the United States because it does not appear in clinical records. It may well be, however, that Chagas’ disease is more prevalent in America than clinical records show, because doctors are not looking for it. “If you are in America and hear hoof beats, you don’t look for zebras,” one doctor told me. However, parasites and bugs are able to travel from one continent to the other much faster than zebras. Also, diagnostic tests for Chagas’ disease are rarely called for in the United States, if they are available at all, although ELISA tests are used to detect Chagas’ antibodies throughout Bolivia.
The first indigenous case of Chagas’ disease reported in the United States was a ten-month-old white female child from Corpus Christi, Texas, on July 28, 1954 (Woody and Woody 1955). The disease had spread through triatomine bugs and opossums. This case shows that Trypanosoma cruzi, naturally occurring in animals and triatomine bugs in this area, are infective for humans, and it implies that unrecognized cases are probably present in the area. Since the mid-1970s, large numbers of immigrants have entered the United States from regions in Latin America where Chagas’ disease is common (Ciesielski et al. 1993, Kirchhoff et al. 1987). Epidemiological evidence suggests that many of these people are infected with Chagas’ disease (Kirchhoff 1993). Because Chagas’ heart disease is frequently overlooked, Hagar and Rahimtoola (1991) studied the records of forty-two patients with Chagas’ heart disease seen at one southern California institution since 1974. Eighteen out of twenty-five patients treated for presumed coronary artery disease or dilated cardiomyopathy had gone for as long as 108 months before the diagnosis of Chagas’ disease was considered. Chagas’ heart disease is not rare in the United States among persons from endemic areas but still may be underdiagnosed. Chagas’ disease has also spread to the United States through blood transfusions from Latin American donors with this disease (Kirchhoff 1989; Schmufiis 1985, 1991, 1994).
The medical profession is slowly becoming aware of Chagas’ disease, but, as it first did for AIDS, sees it as restricted to certain social groups and areas. At a recent national conference for tropical medicine in New Orleans, experts were warned of the increase of Chagas’ disease in the United States and provided with a course on the disease to review for their certification exams. This book contributes to this growing awareness by providing a unique holistic perspective of Chagas’ disease and by calling attention to t
he seriousness of the Chagas’ epidemic in Bolivia and Latin America. The perspective is structural and views the elements of Chagas’ disease within a contextual relationship rather than exclusively focusing on some aspect. However, there are focused perspectives within the chapters. Accounts of a number of interesting individuals tell something important about Chagas’ disease. The disease is viewed from their perspective—how they experience, interpret, prevent, and treat it. This book interrelates microbiology and medicine with social, economic, and environmental factors to show how Chagas’ disease can be prevented.
This book also views Chagas’ disease as related to the political economy. This interdisciplinary view relates economics to biology, culture, community ecology, and politics. It is essential to adopt a broad perspective that includes many factors before attempting preventative actions.
Another focus is upon housing, where parasites, insects, and humans interrelate. Houses are centers of peasants’ land, livestock, and base economy. Negative factors affecting the household are migration, abandonment, and loss of land. Houses are cultural institutions, symbols and refuges from the outside. Houses also are containers of parasites, insects, animals, and people. This book concerns the anthropology of the house.
Even though this book deals with houses infested with parasites and insects, one cannot help but think of the homes of the “homeless”—shacks, bridges, cars, tents, and streets—which shelter the mass of generally shifting populations in Bosnia, Ruwanda, the United States, Latin America, and elsewhere. It is hoped that readers of this book will become more active in support of building homes for the homeless and in protecting the wild homes of animals, insects, and plants while supporting the treatment of people sick with Chagas’ disease.
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