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JEREMY A. GREENE ANETHNOGRAPHY OF NONADHERENCE: CULTURE, POVERTY, AND TUBERCULOSIS IN URBAN BOLIVIA ABSTRACT. The author conducted a focused descriptive ethnographic study of nonad- herence with tuberculosis (TB) therapy among Aymara-speaking residents of the city of La Paz, Bolivia. A cohort of patient–informants was identified from the District III TB Control Registry of La Paz as having been nonadherent with their TB medication protocol. From June to August 1998, ethnographic material was collected through participant-observation and repeated interviews and visits in homes, workplaces, clinics, and the community. Ethno- graphic analysis revealed structural barriers to be more important than cultural differences in the production of nonadherence. Though informants maintained a variety of beliefs and practices related to Aymara medicine, the majority of patients were comfortable with a biomedical model of tuberculosis and maintained belief in the efficacy of antituberculosis chemotherapy and desire to finish treatment. Patients overwhelmingly cited hidden costs of treatments, poor access to care, ethnic discrimination, and prior maltreatment by the health system as reasons for abandoning treatment. These data suggest that overemphasis of cultural difference without exploration of other social dimensions of health care delivery can obscure a more practical understanding of nonadherence in marginalized populations. KEY WORDS: anthropology, Aymara, Bolivia, ethnography, patient nonadherence, tuberculosis Sure, they tell you that the treatment for tuberculosis is free, but lamentably this is not so, you need a bit of money. And when somebody doesn’t have resources, they write him down as “nonadherent” and he in the end dies, and it’s just fine, nobody worries over his situation. —Norberto Flores, 28-year-old Aymara textile worker INTRODUCTION Though potent pharmacologic therapies for tuberculosis have been available for years, the production of these magic bullets has not been sufficient to eradicate what has long been considered a social disease. Treatment protocols are long in duration, require a complex schedule, and may cause side effects long after the initial symptoms of the disease have disappeared. Many patients never receive treatment; among those who do, many never complete therapy. Partially in response to this observation, over the past decade short-course directly observed therapy (DOTS) has emerged as the predominant control strategy for pan-susceptible tuberculosis control. DOTS is a treatment protocol of short duration with a simplified drug Culture, Medicine and Psychiatry 28: 401–425, 2004. C 2004 Springer Science+Business Media, Inc.

An Ethnography of Nonadherence: Culture, Poverty, and Tuberculosis in Urban Bolivia

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Page 1: An Ethnography of Nonadherence: Culture, Poverty, and Tuberculosis in Urban Bolivia

JEREMY A. GREENE

AN ETHNOGRAPHY OF NONADHERENCE: CULTURE, POVERTY,AND TUBERCULOSIS IN URBAN BOLIVIA

ABSTRACT. The author conducted a focused descriptive ethnographic study of nonad-herence with tuberculosis (TB) therapy among Aymara-speaking residents of the city of LaPaz, Bolivia. A cohort of patient–informants was identified from the District III TB ControlRegistry of La Paz as having been nonadherent with their TB medication protocol. FromJune to August 1998, ethnographic material was collected through participant-observationand repeated interviews and visits in homes, workplaces, clinics, and the community. Ethno-graphic analysis revealed structural barriers to be more important than cultural differencesin the production of nonadherence. Though informants maintained a variety of beliefs andpractices related to Aymara medicine, the majority of patients were comfortable with abiomedical model of tuberculosis and maintained belief in the efficacy of antituberculosischemotherapy and desire to finish treatment. Patients overwhelmingly cited hidden costsof treatments, poor access to care, ethnic discrimination, and prior maltreatment by thehealth system as reasons for abandoning treatment. These data suggest that overemphasisof cultural difference without exploration of other social dimensions of health care deliverycan obscure a more practical understanding of nonadherence in marginalized populations.

KEY WORDS: anthropology, Aymara, Bolivia, ethnography, patient nonadherence,tuberculosis

Sure, they tell you that the treatment for tuberculosis is free, butlamentably this is not so, you need a bit of money. And when somebodydoesn’t have resources, they write him down as “nonadherent” and hein the end dies, and it’s just fine, nobody worries over his situation.

—Norberto Flores, 28-year-old Aymara textile worker

INTRODUCTION

Though potent pharmacologic therapies for tuberculosis have been available foryears, the production of these magic bullets has not been sufficient to eradicate whathas long been considered a social disease. Treatment protocols are long in duration,require a complex schedule, and may cause side effects long after the initialsymptoms of the disease have disappeared. Many patients never receive treatment;among those who do, many never complete therapy. Partially in response to thisobservation, over the past decade short-course directly observed therapy (DOTS)has emerged as the predominant control strategy for pan-susceptible tuberculosiscontrol. DOTS is a treatment protocol of short duration with a simplified drug

Culture, Medicine and Psychiatry 28: 401–425, 2004.©C 2004 Springer Science+Business Media, Inc.

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regimen, consisting of a treatment of six–eight months’ duration with directlyobserved therapy in at least the initial part of the treatment period. Nonetheless,problems with the delivery and maintenance of antituberculosis therapy persist,allowing TB to remain the number one killer of adults in Latin America (WHO1998, 2003).

The prevalence of tuberculosis in Bolivia—recently estimated at 216 cases per100,000—has been among the highest in Latin America for over a decade (WHO1998, 2003). Within Bolivia, incidence rates among indigenous populations arefive to eight times higher than the national average (PAHO 1996, 2001). Giventhat the WHO reported an incidence rate of 78 new cases per 100,000 in 2000, theincidence among indigenous populations can be conservatively estimated at 390new cases per 100,000 per year. Even when such patients are entered into treatmentprograms—by 1998 the DOTS-detection rate in Bolivia was 77.5 percent–ratesof failure are high—some 38 percent of those entered in the national TB controlplan in 1998 were not successfully treated (WHO 1998, 2003)—with the lead-ing noncurative outcome of therapy being abandono, or treatment nonadherence(PNVCT 1997). The Bolivian National TB Control Program has identified thereduction of nonadherence as one of its top priorities in fighting the epidemic(Mollinedo 1998). This is reflective of policy on a global level; the WHO hasfrequently named nonadherence as the most important obstacle to the global man-agement of tuberculosis (WHO 1998). If this is true, it is important to understandthe factors that produce nonadherence and explain why problems of treatmentadherence are much more severe in certain ethnic subpopulations to develop moreeffective strategies for treatment and eradication.

Nonadherence (or the more authoritarian term “noncompliance”) describes thefailure of a potentially curative treatment that occurs when a patient does notfulfill the therapeutic regimen. In a detailed review of the social science andclinical literatures on TB treatment failure, Sumartojo (1993) delineates fourrecent developments in the epidemiology of TB that contribute to the emergentproblem of nonadherence, namely (1) the emergence of HIV/AIDS as an enhancerof TB; (2) the relationship between TB and adverse social circumstances; (3)the emergence of drug-resistant and multidrug-resistant strains attributed to pooradherence to treatment; and (4) the continued contagious threat and public healthhazard of insufficiently treated patients. In addition to this analysis, at least fivegeneral approaches to understanding nonadherence can be teased apart within themedical and social sciences literature. The first is a decontextualized blaming of thepatient—witness the degree to which the term “noncompliance” became a meansof positioning the responsibility for treatment failure on the patient instead of theprovider (Lerner 1997). This has partially given way to a second, only slightly lessjudgmental literature discussing the intrapersonal psychologic structures at workin those “types” who do not follow therapeutic regimens (e.g., Dubanoski 1988).

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This literature seeks to understand the role of factors such as self-esteem, desireto be cured, and self-control in predicting problems with treatment adherence.

A third approach seeks to predict nonadherence on the basis of the demo-graphic factors of age (Bell and Yach 1988), sex (Henderson 1984), and income(Barnhoon and Adriaanse 1992). However, as Sumartojo (1993) argues, demo-graphic variables are unreliable predictors of patient adherence. First, these vari-ables are never directly causal of the outcome. For example, while women in aparticular population may be found to have increased rates of nonadherence, thereis not likely anything specific to the XX genotype that directly causes the patientnot to adhere to therapy; rather some intermediate factor (e.g., lower literacy ratesin women within a population) can often be found as a more proximate determi-nant. Direct socioeconomic measures such as income and socioeconomic status(SES) are necessarily limited in their ability to depict the complex interactions ofpoverty and disease.

Fourth, a substantial base of literature has developed targeting cultural differ-ence as the chief determinant of nonadherence in ethnic subpopulations (Bastien1992, 1995). Language barriers, insensitivity to indigenous health beliefs, values,and practices, and the failure to adequately translate the rationale of Western dis-ease categories and treatment regimens across cultural boundaries have all beencited as cultural bases for the failure of treatment programs. Weise (1974), focus-ing on the health beliefs of the rural population of southern Haiti as a major barrierto effective TB management, cites “lack of knowledge about the local culture andconsequent failure to operate within it” as the primary reason for failure of TBcontrol. Other studies, including those of Mata (1985), and De Villiers (1991), inHonduras and South Africa, respectively, further describe culture-specific barriersto treatment adherence. Such studies end with a call for culturally sensitive ed-ucational materials and an increased emphasis on understanding of ethnic healthpractices.

The recognition of cultural and linguistic barriers to TB control is crucial to thedevelopment of effective interventions. However, a fifth approach to nonadher-ence argues that many scholars of the cultural determinants of treatment failureare guilty of what Farmer (1997, 2001) calls “immodest claims of causality”: justbecause a culture-specific barrier might affect adherence to tuberculosis therapydoes not mean it is the determining factor behind nonadherence. Culture-specificarguments can ignore the positioning of an individual or population with respect totranscultural institutions such as poverty, discrimination, and systemic injustice.Farmer (1997, 2001) offers a rereading of the above studies in terms of “structuralviolence,” indicating that poor adherence within an ethnically marginal group isoften better explained by economic or political constraints than by folk-culturalconstraints. In rural Haiti, Farmer et al. (1991) found patients’ access to finan-cial resources to be more influential than their understanding of TB etiology in

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predicting treatment failure. A limited number of other studies, such as that ofBarnhoon and Adriaanse (1992) in India, have examined TB nonadherence as aninterplay of structural variables such as geographic and temporal availability ofhealth care, hidden costs of treatment, and quality of available care. Furthermore,such studies point out, poverty and discrimination can affect literacy and educationand can alter prioritization of needs and ability to maintain a steady schedule, allof which can affect the individual’s ability to adhere to treatment.

In Bolivia, as in most of Latin America, the strong association of indigenousethnicity and poverty further problematizes the separation of cultural and structuralcauses of nonadherence (Wood and Patrinos 1994). Though literature examiningthe social problems of TB control in Bolivia is slight, there is official intereston the part of the Bolivian National TB Control Program in understanding thedisproportionately poor outcomes in urban indigenous populations such as theAymara of La Paz (Mollinedo 1998).

Ethnographic analyses of illness management in the Aymara stretch back toLangley’s description of the Callahuaya herbalists (Langley 1917), and includethe works of Buechler and Buechler (1971, 1996), Crandon-Malamud (1983, 1991)and Bastien (1992, 1995). Recently, focused ethnographic work in collaborationwith the World Health Organization (WHO) has led to an assessment of respi-ratory disease classification, schematization, and care-seeking behavior amongurban Aymara (Hudelson et al. 1995), with the goal of alleviating cultural barriersbetween formal health care providers and the local population. Bolivian physiciansfrequently cite cultural differences in health beliefs and practices as barriers to theeffective distribution of health care to urban Aymara patients (Abos-Hernandezand Olle-Goig 2002). On the other hand, urban Aymara also suffer from dis-proportionately high rates of unemployment and poverty. In spite of remarkableprivate (Barragan 1998) and public efforts (Cuellar 1988) to identify and reducesocioeconomic barriers to health care in La Paz, wide disparities persist in accessto health care between Aymara and criolla (Spanish descent) populations (PAHO1996).

This study began as a collaboration with the Fundacion San Gabriel, a not-for-profit health care system that services a growing set of neighborhoods andshantytowns on the eastern side of La Paz. The study uses the methodology ofapplied ethnography (Trotter 1991) to tease apart the relevance of culture-specificand structural barriers to care in the illness experience of urban Aymara patientsclassified as nonadherent by the Bolivian National TB Control Program. Thoughthis approach necessitates a limited sample size, what is lost in generalizability isgained in the sensitivity and richness with which ethnographic methodology candepict the street-level experience of illness management, a view not available withmore quantitatively based demographic or epidemiologic approaches (Kleinman1988).

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METHODOLOGY

Study Setting

Fieldwork was conducted from June to August of 1998 in the communities thatmake up the Ladera Este of La Paz, Bolivia (literally, the “Eastern Slope” of thegorge in which the city lies). The Ladera Este, also designated La Paz Public HealthDistrict-III, covers an area of 22 square kilometers, with a population that hasincreased at an annual growth rate of 4.2 percent, reaching 120,000 inhabitants in1996 (Barragan 1998). The nine neighborhoods of Ladera Este comprise a largelybilingual population, in which Aymara is the most frequently spoken languageother than Spanish.

Great parts of the hillside population of the Ladera Este have only recentlybeen incorporated into urban life (Barragan 1998). The periurban neighborhoodsof the Ladera Este are perched between rural Aymara and urban criolla society.As members of these communities construct identities using elements of bothcultures, their health-related decisions are drawn from a pluralistic system thatincludes Western biomedicine, Aymara ethnomedicine, and an assortment of othermedical practices. The Pan-American Health Organization (PAHO 1996, 2001)divides the health services available to the population into three categories: formal(on the basis of “scientific medical approach”), traditional (rooted in “culturallydetermined views of health”), and informal (essentially, “strategies for survival”or home remedies). More than 30 percent of Bolivian Aymara treat themselveswith over-the-counter or home remedies, and 10–30 percent rely on traditionalAymara medicine. The people of the Ladera Este access formal health care chieflythrough the Fundacion San Gabriel Health System (which assumes public healthresponsibilities for the district), but many other private venues for biomedicalhealth care exist.

Poverty is an important factor in daily life for most Aymara of the Ladera Este.The overall poverty rate in urban Bolivia has been estimated at 52.6 percent,and the incidence of extreme poverty is 50 percent greater among Bolivians whospeak an indigenous language. A recent survey indicated that on an average,indigenous peoples in Bolivia live on a per capita monthly income of less than100 Boliviano (roughly $18), a figure that is less that two-thirds the income ofnonindigenous peoples (greater than 150B, or roughly $30, monthly per capitaincome) (Wood and Patrinos 1994). Ethnic discrimination and overt racism arereportedly commonplace in many public institutions (Albo 1991).

Recent demographic studies estimate that 19 percent of the population of theLadera Este can be considered indigent. A further 60 percent of the population,though able to cover food needs, lacks sufficient income to pay for educational,health care, and housing needs. Only 21 percent can cover all needs in an acceptableway. The average family size is 5.17 members, with an average family income

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of $93.26 per month, yielding a per capita income of only $18.03 per month forthe area (Barragan 1998). In recent years, increased inflow of migrants from ruralareas into these periurban neighborhoods has hurt the unskilled labor market, andunemployment rates have been elevating significantly (Albo 1991).

Definition of Study Sample

Using official registries of the Bolivian National TB Control Program and thehelp of doctors, nurses, and health care workers in the District III health system,a list was compiled of TB patients in the Ladera Este who had not completedtreatment, had experienced difficulties completing treatment, or whose outcomewas unknown. With the help of community health workers, I visited the houses ofthese patients to identify a population of nonadherent Aymara- speaking patients.Following the operative definition of nonadherence practiced by doctors of thehealth system, a patient was considered nonadherent who had missed at least onecontinuous week of their medication schedule. From an initial list of roughly 25nonadherent cases, we were able to locate six individuals who were still present inthe community, five of whom agreed to participate in the study. Informed consentwas obtained in Spanish from all informants prior to interviewing. The participantsof the study group consisted of three women and two men, ranging in age from18 to 33.

Interviews and Data Collection

Interviews were recorded in the houses of patients, at their workplaces, in theclinics and hospital, or around the neighborhood. The majority of interviews wereconducted in Spanish without an interpreter. I was assisted in certain interviewsby Dolores Charlay, an Aymara ethnographer, who helped translate questionsand answers on the occasion that conversations lapsed into Aymara, and assistedin the transcription of interviews that contained Aymara phrases. Much of thedata presented in this paper comes from observation of cases in clinics, work-places, neighborhoods, and homes; this included the five central case studies and asurrounding web of family members, employers, health care providers, and com-munity members. One informant’s household included a yatiri (shaman) withinthe extended family, and I was able to observe and participate in a number ofhealing ceremonies that the yatiri conducted for the treatment of the informant’sillness and those of other community members. Similarly, the doctors of the Dis-trict III health system allowed me to participate in general rounds at the hospitaland observe patient visits and procedures in the hospital and in neighborhoodclinics. Focus groups with physicians, health workers, and community memberswere held at the beginning and the end of the study.

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RESULTS

Aymara Identity, Health Beliefs, and Practices

Given the situation of cultural flux that characterizes these Aymara shantytowncommunities, it is not surprising that the informants of this investigation displayeda range of attitudes towards Aymara medical practices. Attitudes and practicesregarding Aymara medicine varied from wholesale acceptance or rejection to se-lective utilization. One important point that emerges is that most of the informantsused at least one form of Aymara medicine at some point in the management oftheir tuberculosis.

Following an extensive tradition in Andean medical anthropology (Bastien1992; Buechler and Buechler 1971, 1996; Crandon-Malamud 1991; Hudelsonet al. 1995; Langley 1917), PAHO (1996) has divided the broad field of Aymaramedicine into three main institutions: yatiris or curanderos (shamans), naturistas(herbalists) and remedios caseros (home remedies). Yatiris are powerful individu-als who communicate with spiritual forces to intervene on behalf of their patientsand improve their health, and use physical manipulation such as venupressureand abdominal friction for both diagnostic and therapeutic effect. Naturistas areAymara herbalists who diagnose illnesses and prescribe natural medications froma repertoire of over a thousand plants. Like many home remedies found elsewhere,Aymara remedios caseros include foods believed to provide strength to the sickperson, infusion drinks with medicinal qualities (mates), and body rubs, amongother practices.

Dona Claudina and Edgar Quispe.1 Although the traditions of yatiris andnaturistas are both based in a common Aymara cosmology, they represent quitedifferent approaches to the practice of healing. Patients and their families candiffer in their acceptance and use of the two institutions; this is well illustrated inthe family of Edgar Quispe. At the time of this study, Edgar was a 20-year-oldconstruction worker who completed five months of treatment before dropping outof the TB control program. He lived in Villa San Antonio Bajo with his brotherand his mother, Dona Claudina, who was ill with tuberculosis before him. DonaClaudina describes the interaction of several medical systems in the managementof her own illness:

[When I had tuberculosis] I first went to the yatiris; they gave me cures to take for thecough. They made me take donkey milk, a lot of garlic. I took a lot of things, I don’t knowexactly what they were, for the tuberculosis. But they didn’t help me much; I was coughinga year and a half. Also [the naturistas gave me] herbs . . . [b]ut they didn’t do anythingfor me. . . . But then I went to the General Hospital, and I was hospitalized there. I enteredthere totally pale, unable to eat, tired all the time. I only weighed 38 kilos when I washospitalized. Now I have completed all of my treatment and I am cured.

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Dona Claudina used naturistas, yatiris, home remedies, and biomedical therapeu-tics in the management of her illness, though in her narrative only the latter helpedto cure the tuberculosis. In response to his mother’s story, Edgar stated emphati-cally that he did not believe in curanderos. When he developed tuberculosis, hismother wanted him to visit both yatiris and naturistas, but he rejected them infavor of a strictly biomedical approach. As a young man who had adopted Westerndress and lived his entire life in the city of La Paz, his cultural identity differedsignificantly from that of his mother, a woman of an older generation, de pollera(traditional dress), and rural origin. It is not surprising that they would differ intheir use of Aymara medicine.

Norberto Flores. The decision to believe in one medical practice over anothercan involve both pragmatic empiricism and religious affiliation. Norberto Flores,a 28-year-old man, completed four months of treatment before dropping out of theTB control program. Norberto worked in a textile factory and lived in the houseof his grandparents with his parents, brothers, sisters, and their families. Over thecourse of his illness, Norberto used certain naturalistic home remedies, but didnot visit a yatiri or a naturista. Within his family, there was disagreement over thelegitimacy of the various healers:

Norberto’s Father: No, we never go to yatiris, we only go to see doctors, whohave studied. I don’t have faith in the yatiris.

Norberto’s Mother: We don’t believe in yatiris, but in some cases we can be-lieve in Aymara medicine, which is different. . . . Naturistas are not the sameas yatiris; the difference is that [naturistas] have, just like the doctors, theirmedicines. . . . Yatiris, it depends on the situation, you know? They can readyour fortune, many things, but they sometimes hurt people.

Norberto’s Father: How can I say this? How can I explain? . . . I don’t have faith inthem any more. Closed. I don’t believe in naturistas, I don’t believe in brujeria(witchcraft), these seem, how can I say? . . . The customs of our culture. But Idon’t have faith. I have faith in science. . . .

Norberto’s mother continued to document the efficacy of various naturistamedicines with family anecdotes. Meanwhile, her husband continued to proclaimthat “science” was the only way to approach health and disease. This argumentreflects the differences in criteria by which individuals choose health care in apluralistic society; the empiricism Norberto’s mother exhibits towards naturistasis countered by the almost dogmatic faith with which Norberto’s father regardsbiomedical science and technology.

Dolores Arpasi and Linda Mamani Sanchez. In these communities of culturalflux, health attitudes and practices can change as individuals transition from onelifestyle, occupation, or religious group to another (e.g., see Crandon-Malamud

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1991). Dolores Arpasi, a 31-year-old woman, discontinued treatment after the firstmonth of her antituberculosis regimen. Dolores lived in her mother’s householdhigh in the neighborhood of Villa San Antonio with her husband, children, sister,and nieces. She was born in Mina Ch’oqui, a rural community a few hours drivefrom La Paz. Like the majority of Aymara families, Dolores’ family was nominallyCatholic when they moved to the city. After moving to La Paz, however, her familywas converted by testigos (Jehovah’s Witnesses), who evangelized door-to-doorin the hillside neighborhoods.This change of religious alignment brought with itchanges in health beliefs and practices, which Dolores described:

Before, yes . . . I believed in yatiris, in reading the coca, maldicion (throwing curses), thesethings. But now that I have studied [with the testigos], I don’t believe any more in theyatiris, curanderos, or naturistas. I have not seen a naturista. Whenever I am sick, I alwaysthink I should go see a doctor. This is my belief: a doctor. Whatever the doctor says, Ibelieve. And I don’t drink the mates (infusions) or herbs, or home remedies. Because youdon’t know what they will do, what will happen, when you take herbs. . . . Before, when wewere little, our mother was a believer. She believed in ajayus (a part of the soul that canbe lost), she believed in the coca, in the yatiris. But afterwards, no more. Now she doesn’tbelieve. If a yatiri were to tell her something was going to happen tomorrow, she wouldn’tbelieve him. She has changed a lot.

The experience of Dolores and her mother succinctly describes the importance ofreligious membership in the geographical and cultural transition that accompaniesmigration from rural to urban life.

And yet religion was never simply an all-or-nothing determinant of healthdecision-making. Linda Mamani Sanchez was an 18-year-old woman dressed devestido (in Western dress) who recently graduated from high school and was tryingto obtain a scholarship to attend university. She lived in her parents’ house with herbrothers, sisters, nieces, and nephews, and completed three months of treatmentbefore dropping out of the TB control program. Her family related a strong Aymaraself-identification; her mother dressed in traditional Aymara garb and everyonein the family could speak some Aymara. Like Dolores’ family, Linda’s family’smembership in a Protestant church partly shaped the selection of traditions whichthey used in defining their identity:

Linda’s father: The naturistas are people who generally come from the country,and they know the cures from before. Because before there weren’t any doctors.Before, there weren’t hospitals. . . . They know perfectly which are the herbs thatcan cure the illnesses one has . . . They learned them from their ancestors, whichherbs would cure this disease or that disease. Well, I myself know a few herbsto take for a small cough, like eucalyptus mate with lemon. And for stomachpain you can take mate de coca, or parsley mate with lemon. . . . I believe in theherbs. . . .

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[But] the yatiris, I ignore this part and I don’t believe in it either. I don’t believe init. Yes, I will see a naturista, to get some herbal medicine, yes. But the yatirisare brujos (witches), they really have a pact with the devil. As a follower ofChrist I can’t accept any aspect of this situation.

Linda’s mother, however, exhibited a somewhat more empirical approach, notopenly contradicting her husband but privately revealing to me that, in her experi-ence, yatiris had been highly effective in treating family cases of susto (a form ofsoul loss common to many local nosologies in Latin America) in Linda’s sisters.Linda herself, at the beginning of her illness (later diagnosed as tuberculosis), wastaken to a yatiri because she was showing the symptoms of soul loss. She demon-strated a facile agency in assessing the usefulness of Aymara health practices forher own health management:

Linda: I was sick, I had susto. The yatiri cured me of my susto. . . . But I don’tbelieve in the suerte de coca (divination from coca leaves). I don’t believe inthis at all, . . . you can’t change your destiny, so the yatiris can’t help you withthis. But with susto . . . they can help, they can change things.

Well, they tell us in the church, in my religion, that the yatiris have a pact with thedevil. But I don’t believe that either.

Though Linda recognized the conflict between her church and her faith in yatiris,she did not see a need to address the issue in all-or-nothing terms. Rather, shetook a line-item approach in her assessment of shamanistic practices, shunningcoca-reading because it interfered with her religious cosmology of destiny whileallowing for the efficacy of yatiris in curing susto, based on her own experience.

It is clear from these narratives that there was no monolithic edifice of Aymaramedicine dictating the behavior of these informants, but rather a spectrum of beliefsand practices tightly interwoven with the varied and changing surface of urbanAymara identity. As a broad set of techniques to be implemented or discardedon an individual basis, “Aymara medicine” was evidently many things to manypeople.

Aymara Medicine and Biomedicine in the Management of Tuberculosis

From the point of view of the informants, there were no necessary conflicts betweenAymara medicine and biomedicine in the management of tuberculosis. Amongthe patients who visited yatiris and naturistas, there was a general agreementthat though some diseases, such as maldicion, were better treated by yatiris andnaturistas, in the case of TB the forms of medicine were generally agreed to becomplementary. For example, two of the informants, Linda and Rosaria Condori

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(described below), were both diagnosed with susto at some point during theirexperience as TB patients. Although susto is a nonbiomedical diagnosis thatexplains some of the clinical manifestations of tuberculosis (loss of appetite, lossof weight, difficulty sleeping, night sweats, fever) the diagnosis of susto did notreplace or compete with Linda or Rosaria’s diagnosis of TB. According to bothpatients, the yatiri treated the susto, and the medical doctor treated the TB; noconflict was perceived.

Rosaria Condori. In the case of Rosaria Condori—an 18-year-old woman devestido (in Western dress)who lived at home with parents and extended family—the yatiri was her grandmother, Dona Asunta, while the doctor was Dr. Calderon,the director of the local TB control program; I was able to witness both treatmentsin their respective spheres. Rosaria had returned to her TB therapy after a weeklonglapse in treatment. She worked selling saltenas (meat pastries) downtown. DonaAsunta and Rosaria’s mother, Dona Torivia, both wore traditional Aymara dress.During a pause in an ajayu ceremony to cure Rosaria of her susto, her motherand aunt spoke of the importance of both traditions in managing her health. Theymaintained that Dr. Calderon had helped in her recovery just as much as the Aymaramedicines. A disease such as tuberculosis, “not meant for Aymara medicine,” wasthe realm of the physician; Aymara medications could only be used for palliativeeffect. Susto, on the other hand, represented a symmetrical reversal, “not meantfor the doctor but for Aymara medicine”—the doctor’s medicines could treat thesymptoms but not the underlying cause of soul loss.

All informants utilizing Aymara medical modalities in the course of their tu-berculosis treatment employed them either as palliative agents or as specific curesfor complementary diagnoses distinct from tuberculosis. The Aymara gloss fortuberculosis, t’uqa usu, is a neologism in Aymara. The word usu means “cough”in Aymara, and t’uqa usu can be considered an intractable cough, a cough thatis not getting better. Aymara medications and home remedies for t’uqa usu aimfor symptomatic and palliative effect, and do not necessarily conflict with thedemands of a tuberculosis control program; they include the ingestion of don-key’s milk and black beer/liver drinks (for strength), grains and vegetables (togain weight), eucalyptus infusions and syrups (to treat the cough), and others. Asone informant noted, “Aymara medicine does not say that we shouldn’t take Dr.Calderon’s medications.” Norberto Flores clarified:

The medicine of the naturistas the Aymara medicine, it is—how do I explain—it issomething that has its pros and its cons. Many times there are plants or perhaps naturalmedications that cure people, but they only cure momentarily. . . .

There are medicines that work, for example, for respiratory afflictions, like what hap-pened to me, the tuberculosis, there is a plant, wira wira, which you boil and then drink thewater. This mate, it takes away the cough. It helps. So I took this, and there’s another leaf,a palm leaf, called lampazo, which you put on your back for the night, over your lungs, andin the morning it is dry, they say that it is like a sponge. . . . So there are plants that help, but

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they don’t cure. . . . The things that I took, the plants, in no way cured me. They gave meat least a better feeling. Of course, for things like the flu, they are enough. They work. But[with tuberculosis] it’s not the same.

This is not to say that urban Aymara health practices and beliefs do not come intoconflict with biomedicine. Bastien has detailed several areas of conflict betweenethnomedicine and biomedicine in La Paz (Bastien 1992), and the informants inthis study could name several therapeutic decisions in which the two systems didcome into conflict. However, tuberculosis was described as a disease for whichpractitioners of Aymara medicine promised no cure, only palliative processes.Therefore, in this limited sample, no conflict was perceived between the twosystems—all informants agreed that the illness should be treated by pharmaceuticalagents in accordance with the biomedical model of tuberculosis.

Understanding of Tuberculosis Natural History and TB Drug Regimens

All of the informants could explain the etiology and pathophysiology of tuberculo-sis and the logic of tuberculosis therapy in ways that approximated the biomedicalmodel. This is significant in that it suggests that the decision to leave treatmentby these patients was not based on a lack of understanding of the significanceof treatment. Although their symptoms had disappeared after the initial month oftreatment, none of the noncompliant patients believed that they had been curedof their disease. No informant believed that one could be cured of disease beforethe seven months of treatment were over, and they became visibly agitated as theyexplained that they were still in danger. Edgar Quispe’s narrative is illustrative:

Beginning with the bugs . . . when you get the sickness from someone, someone in yourfamily, they pass the bugs to you. When you have an X-ray taken, they can see them, andthey tell you to take the medications. And when you start the medications, you get better.They say that when you stop taking the medications, there are areas where the bugs aresleeping, and they can get worse, and they attack you. Then they begin to eat your lungs,and this is how people die.

[The medications] kill them. In the first few days with the medications, they begin tokill the bugs one by one. One by one, and when you finish all the medications for sevenmonths, you have to take another X-ray to see if you are completely cured, or if a few ofthem still remain. If you stop in the middle of treatment, that is when they say the bugs areborn that will return and be difficult to treat. These return with more force, you see. Andthen a worse sickness develops.

A clinician might point out that an X-ray enables one to see tuberculous lesions,not the bacillus or “bug” that causes them. However, it is clear that Edgar’snarrative demonstrates familiarity with the essential logic of tuberculosis etiology,pathophysiology, and therapy, as outlined in Table I.

This narrative in and of itself does not prove that Edgar Quispe believes in thebiomedical model of tuberculosis or the efficacy of tuberculosis treatment. It is

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TABLE 1Narratives of Tuberculosis Etiology and Pathogenesis

Infectious etiology “They pass the bugs to you.”Pulmonary pathogenesis with lethal potential “Then they begin to eat your lungs, and this is

how people die.“Diagnosis requires biomedical attention “The bugs can only be seen by X-ray.”Best addressed with specific chemotherapy “In the first few days with the medications,

they kill the bugs one by one.”Therapy complicated by dormant phase “There are areas where the bugs are sleeping.”Long-term adherence is essential to therapy “When you take the medications for seven

months, you have to take another X-ray tosee if you are completely cured, or if a fewof them still remain.”

Poor adherence with treatment generates riskof relapse with antibiotic-resistant strains

“If you stop in the middle of treatment, that iswhen they say the bugs are born that willreturn and be difficult to treat. These returnwith more force, you see. And then a worsesickness develops.”

possible that he is just repeating what he has heard said to him by doctors andnurses, not what he believes is true. But Edgar’s ability to explicate the logic of theTB control program does demonstrate that he has a familiarity with the concepts,and that his failure to adhere to the treatment program may not be due to a lackof knowledge about TB and TB treatment. Edgar’s sincerity is further supportedby his evident concern and agitation when he discusses his fears of the diseasereemerging:

That the disease might return, that it might come back, this is what I am scared of. BecauseI haven’t finished the treatments, maybe one of these days, it will come again. And I don’twant to suffer again like I did before. It is very ugly, this disease.

Right now I am feeling good. But I ’m not certain, since I never finished the treatments,that maybe later I might get the disease again.

I only want to know if I can finish the treatment somehow, so that I can feel free. I wantto work, but my job involves heavy things, hard work. The work of a construction workeris heavy. . . . And now that I have not finished the treatment, I have this fear. . . . If I finishtreatment I can work with a calmer mind, more confidence. I still have this fear that thesickness will return.

Edgar demonstrates both a deep-seated fear of being revisited by his uncureddisease and a sincere desire to finish the treatment program. This narrative wasreflected in various permutations by all informants, and the same themes resonatedin all of these: understanding of the infectious nature of TB, placement of TB treat-ment within the domain of biomedical institutions, the importance of adherence tothe full course of treatment, the fear of reemergent resistant strains, and the desireto finish treatment.

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Dolores Arpasi, who just finished her seven-month treatment after an initiallapse, explicated the disease in a similar fashion. Dolores spoke of tuberculosisas a disease of “Koch’s bacilli,” which enter the lungs and eat the lungs “untilyou cough up blood and die.” The disease is worse in miners, and in those whodon’t have enough to eat. Medications eliminate the bacilli from the body, but“the bacillus is very strong, it doesn’t die easily,” not until you complete all themedications. Dolores described persisting with treatments that made her feel sickbecause “after one month, two months, three months, you aren’t healthy yet.”Until you finish treatments, “this bug will keep pestering you until you die; theyare very resistant, these bacilli.”

Again, there are aspects of Dolores’ narrative that do not conform precisely tothe biomedical perspective; the role of coal dust and malnutrition in the etiologyof tuberculosis might be contested by some specialists. But like Edgar, Doloreswas able to demonstrate a clear understanding of the goals of tuberculosis therapyin relation to the microbial basis of the disease and the importance of completingthe antimicrobial regimen.

The one informant who did not fully accept the microbial basis of tuberculosisand the efficacy of antituberculosis treatments was Linda Mamani. Though able toarticulate the logic of TB control as well as Edgar and Dolores, Linda manifesteda hesitancy in belief; she was not sure which aspects of disease and therapy toaccept and which to reject:

I believe that the injections treated my tuberculosis, but the pills, no. For me, I took all myinjections, I needed to get better. And I got better, I had an appetite. But the pills, no . . . theymade me so sick. . . .

The doctor says bugs, they eat your lungs bit by bit. And when you take the medications,these bugs will die, he told me. The medications kill the bugs. This is what I’ve been told,but I ’m not sure. It seems uncertain to me. Because the pills didn’t help me. . . .

I am afraid, though, because the doctor told me . . . when you begin taking the injections,you’re going to think that you are cured, but you won’t be. You won’t be cured unless youfinish the treatment, you will think that you are cured because you are feeling good, but atthe same time you need to finish all the months. If you stop after the first month, we willnever be able to cure you, the doctor told me. And yes, I have a fear that it would returnand he wouldn’t be able to cure me.

Linda had recently graduated from high school and was planning to apply tothe university to study medicine and become a doctor, or if she could not findfinancial resources for medical school, to train to become a nurse. She is notcritical of biomedicine as a whole. Rather, Linda differentiated between injectionsand pills on an empirical basis, just as she differentially selected between yatiritraditions of susto and suerte de coca, based on her declarative experience.

She maintained that TB is a disease that should be treated by a doctor, notby yatiri or naturista or home remedies. However, Linda is not certain that sheaccepts the microbial nature of TB; she has not been convinced. Her belief in the

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efficacy of the first phase of treatment (the injections), which visibly improved herwell-being, did not lead her to accept the efficacy of the second phase of treatment(the pills), with which she experienced strong negative side effects. Though shequestions the efficacy of the pills, she is still concerned that she is not cured, andexpresses a strong fear of the disease returning in a resistant form:

I think that I feel healthy, my lungs are good, but I have a bit of fear that the sicknesscould return and be worse and then I wouldn’t be cured. As I told you, I want to go get anX-ray to see if my lungs are well, and return to treatment. But as I told you, I don’t want totake these pills, because they make me sick, they hurt me. I don’t know if there is anothertreatment? . . . As I said before, I prefer the injections.

Linda displayed a willingness to trust the efficacy of biomedical therapeuticscoupled with an empirical skepticism based on her own symptomatic experience.She approached her doctor with her concerns but was not adequately reassured;he did not adequately address the side effects that she was experiencing. Con-sequently, she began to reject the pills on the basis of her own experience: thatthese medications were making her symptoms worse, and not better. The empiricalbasis of this rejection suggests that it has less to do with her cultural beliefs as anAymara woman; the origin of her nonadherence is likely to lie in more structuralfactors.

Mistrust of the Medical System

The social structure of La Paz is charged with ethnic discrimination, and thebiomedical health care system is no exception. All but one of the informants inthis study could recount episodes of maltreatment at the hands of health careprofessionals; many of the incidents were within the management of their currenttuberculosis. Not only can maltreatment directly lead to nonadherence, it can alsofoster a long-term mistrust of the health care system and personnel, which in turndetrimentally affects treatment outcomes.

Edgar Quispe mentioned that one thing preventing him from returning to thehospital was a fear that his doctor would blame him and scold him for leavinghis treatment program. Several other patients mentioned scolding and blame asbarriers in a similar way. In particular, Linda Mamani Sanchez singled out blameas one of the reasons she stopped treatment in the first place. Linda worked withher father at the National Institute for the Blind; her father had been blindedabout five years prior and needed her assistance when his work with the Instituterequired him to travel. One of these business trips was scheduled on the day shewas supposed to see her physician to receive the next week’s supply of pills.

I stopped treatment because I had to travel with my father, and I had an appointment thatweek which I missed. But I didn’t go to the hospital because I was in Sucre. I returned, but

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then I had to go to Cochabamba. And I didn’t want to go to the doctor because he frightenedme. . . . I felt that the doctor would blame me for not taking my treatments.

I’ve seen many doctors, and I like them, the ones I’ve seen . . . [but] not all of them, Idon’t particularly like [the doctor who treated my TB]. He’s too serious, and gives me ahard time. He gets mad easily, it seems like he gets mad at me a lot. . . .

I had an appointment on Tuesday, but I was on a trip with my father until Wednesday.And I arrived here Wednesday, from the trip, and I was afraid to go to the doctor, I thoughthe would scold me because I missed treatment for a day. For this reason, I didn’t go backto get more pills. I was afraid. . . . So this is why I didn’t go back to the doctor.

After following patients in their attempts to access care, the material basis ofthis fear became more evident. In hospitals and clinics, the initial destination forsomeone with limited income like Linda was always the office of the social worker,who would provide discounts on consultation fees if the patient could prove his orher income was below a certain threshold. The same social worker also kept thelocal records for the TB control program, and was in charge of dispensing free TBmedications.

On Linda’s first visit to the hospital after her treatment lapse, she was askeda series of questions about her household income, after which the social workernoticed that Linda had been without TB medications for a month. At this point,the social worker launched a tirade of accusative questions at Linda, raising hervoice as she denounced her actions. When Linda attempted to explain what herproblems had been, she was shouted down by the social worker: “There is noexcuse! This is your health! Do you like killing yourself? Do you like endangeringyour family?” This continued for about 15 minutes, in spite of my attempts tointervene; at the end the social worker strode out past a trembling, tearful Linda.Afterwards, between sobs, Linda furiously denounced the abuse that she had justreceived, and repeated that this was the reason she hated coming to the hospital toget her treatments.

Whether this episode demonstrates systematic paternalism or ethnic discrimi-nation or just a callous attitude towards all patients alike on the part of one socialworker is impossible to document here. Certainly the social worker thought thatshe was doing what was best for the patient; privately she told me that it is im-portant to “put some fear into people” to motivate them to take their medicine. Inany case, for Linda the outcomes appeared exactly opposite. The receipt of abusefrom an obligatory contact in the system of medication distribution helped to driveher away from treatment and subsequently became an effective barrier to futuretreatments.

Nonadherence and Structural Barriers to Care

In an initial focus group with health workers, local physicians expressed doubtsthat socioeconomic factors could affect their patients’ decision to abandon

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antimicrobial therapy, since the treatments were provided free of charge by theNational TB Program. However, this study revealed many ways in which lack ofresources affected the way informants managed their illnesses. These hidden costsof treatment and logistical barriers to access proved very important in determiningthe nonadherence of all of the informants.

Norberto Flores was entered into the National TB Control Program in Mayof 1998 when his parents brought him to the National Institute of the Thoraxwith a positive AFB smear and signs of fluid in his left lung on the chest X-ray.The Bolivian National TB Program is structured such that all entered patientsreceive free medications through the DOTS program. DOTS, short for DirectlyObserved Therapy: Short course, is a global WHO intervention designed to re-duce nonadherence with TB medications by requiring patient medication to beobserved by authorized personnel for a significant portion of treatment. There is,however, some room for interpretation in the implementation of DOTS. In somelocations, community health care workers will visit the homes of patients to watchthe pills being taken. In La Paz during the course of this study, however, theexpansion of the DOTS program had meant that patients were required to cometo the hospital every day for the first month to receive their medicines (isoniazid,rifampin, streptomycin, and pyrazinimide) for the day and to be observed takingthem. After the first month, patients were required to visit the hospital once aweek to pick up a week’s supply of medicines (rifampin and isoniazid) for sixmonths (MDHSNS 1996). Toward the end of the study period, the Bolivian TBControl Program began to shift from this one month daily observation policyto a two-month daily observation policy, extended the total time of the DOTStherapy from seven to eight months, and also shifted its drug regimen to includeisoniazid, rifampin, ethambutol, and pyrazinimide in the initial period (Mollinedo1998).

Transportation costs are the first of several hidden costs associated with TBmedication. There are numerous micros (minivan transports), which for 25 centswill take a person from Norberto’s neighborhood in Alto San Antonio to theInstitute of the Thorax in Bajo Miraflores. The walk, on the other hand, is two hourssteeply downhill and two hours steeply uphill. Since Norberto was unemployedwhen he was diagnosed, he could not afford the micro fare. Instead, every morning,at the height of his symptoms, he would leave his house at 8:00 a.m. and walkdownhill, arriving at the hospital at 10:00 in the morning. Staying at the hospitalwas not an option for Norberto, because that would have been even more expensive.But he did walk to the hospital every day for a month, Saturdays and Sundaysincluded, to complete the first phase of treatment. Edgar Quispe found himselfin a similar circumstance for the first month of treatment when, unable to affordhospitalization or transportation, he walked over an hour to and from the hospitalevery day to receive treatment.

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In addition to transportation costs, the demands of the DOTS program requiredpatients to pay out-of-pocket costs for regular hospital visits with physicians anddiagnostic tests such as X-rays. For Norberto Flores, economic difficulties beganto set in after the first month of treatment. Each X-ray cost 120B (at that timeroughly $22—a steep fee for a population with a per capita monthly income of$18), monthly sputum smears had to be read by a physician at 15B ($3) per consult.Because he was unemployed and needed to support his wife and three children,Norberto could not easily meet these expenses. “I stopped medication because,unfortunately, I couldn’t deal with the expenses,” he explained, “You see, it’s abit strange: they say it’s free, but unfortunately you have to pay for it—you haveto have a bit of money to cover these other costs, no?” Norberto Flores stoppedtaking his TB medications precisely because of economic barriers:

It’s a bit difficult because, as I told you, the radiography and the control smear cost morethan 100B ($18); the consult costs 15B ($3) . . . it will cost me almost 150B ($27) to starttreatment again. At this moment, I don’t even have the money for the trip to the hospital.So this situation, I didn’t choose to stop treatment, you have to understand the situation. Itried to find the money, but since I have three children that I need to support . . . this worriedme more.

Further hidden costs, crucial to the economics of the periurban Aymara popula-tion, stem from the excess time spent traveling to receive medications. “The resultof the disease,” Norberto noted, “was that I could not find work.” In addition tothe doctor’s orders not to work because of the danger of contagion, the scheduleof the DOTS program made it more difficult for him to find a job. “Every day Ihad to go to the doctor,” he noted, “and unfortunately, where I was waiting therewas always a mountain of patients and I would lose the whole morning waiting.”Furthermore, to get the pills, there were a large number of forms that needed tobe filled out every day, which added to the time demands. Norberto’s economicsituation, already tenuous, was worsened not only by the disease, but also by thetime demands of the treatment program.

After the first month of treatment, patients must return to the hospital every sevendays to pick up medications for the next week. After two weeks on this schedule,Norberto found that he could not continue supporting the costs of treatment, andhe could not find a job if he spent so much time at the hospital. Though afraid ofthe long-term repercussions of leaving treatment early, Norberto was more afraidof the immediate repercussions of his economic situation. Or, as he phrased it,though finishing the seven months of treatment was important to maintaining hishealth, putting food on his family’s plates was even more important.

Norberto was fortunate to find employment; his mother had been working forseveral years in good standing at a textile factory on the other side of La Paz,and she was able to prevail upon the foreman to give Norberto a job working themachines that knit alpaca sweaters. Norberto had been working at this job for one

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week at the beginning of the study, and he was happy to be employed. However,the job had very long hours, from 8:00 in the morning until 8:00 at night—in short,during all the hours when the TB physicians at the hospitals would see patients.He had been told repeatedly that he could not obtain permission to take time offwork to go to the hospital. New employees were not allowed to take days off forany reason; on top of that, the factory was currently forcing all workers to workextra hours because July and August were peak production months. Lunchtimewas not an option for a medical visit—lunch at the factory was a half-hour breakduring which all workers had to eat inside the factory compound. When Norbertoreturned home from work at night, the clinics were all closed. Even with myconnections to the local hospital it was difficult to offer help to Norberto:

I would really like to accept the help you are offering me, and go with you to the hospital,because it is my health, I need to be careful about my health. But unfortunately with thejob that I’ve recently found it is a bit difficult [to go to the hospital]. . . . This is the problemwith work. If I didn’t have a job, I wouldn’t be able to feed myself; and there would bea greater chance that the disease would return. I need to work to support myself; to eatbreakfast, lunch, and dinner . . . because the tuberculosis, is much worse with malnutrition.Eating is more important than continuing the medicines. . . .

Norberto occupies a paradoxical position illustrative of the structural barriersthat constrain the interactions many Aymara have with the National TB ControlProgram. Though he stopped treatment because he couldn’t afford the X-rays,consults, and other hidden costs associated with the TB control program, hisefforts to surmount these economic barriers placed him in a situation in which hisaccess to care was even poorer. Norberto found himself in a double bind commonto many Aymara men and women of working age in these hillside neighborhoods.The increased flow of rural migrants into shantytown populations without a parallelincrease in employment opportunities has left the population of unskilled Aymaralaborers in a tenuous situation. Very few jobs are available, so economic resourcesare scarce for most. Furthermore, as there are “ten people in line for each job” andlittle legal protection for workers, those fortunate enough to find work are oftenseen by their employers as cheap, expendable, and replaceable.

In Norberto’s own words, the problem of TB control in these hillside neighbor-hoods of La Paz is a broad socioeconomic problem:

Unfortunately, to do this kind of treatment, it is long, and you can’t work, and then there isno source of income for the family. . . . You can see that life here is a bit difficult. . . . Andmost people here have situations very similar to mine. It’s very lucky if someone can holda job for five or six years. So it’s full of pressures, the life we live here. Because the hillsideneighborhoods here keep growing, and as they grow with more people from the country,there are very few sources of work, and we can’t go back to how it was before.

All of the informants interviewed were from middle-low income families, andall expressed a difficulty paying for the X-rays and regular consults. Edgar Quispe,

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for example, lived in a rented one-room house with his mother and brother. Theyhad lived there since they were kicked out of their last home by Edgar’s unclefollowing the disappearance of Edgar’s father. For this reason, since the age of 10,Edgar has had to work as a construction worker to support his family; he is now20 and has worked in construction for half of his life.

Although Edgar worked full time and his mother worked doing laundry forcriolla women downtown, they had very little money. Furthermore, his job oftensent him to construction projects outside of La Paz, often with little notice. Hedescribed a situation similar to Norberto Flores—when out of work, he couldn’tafford the additional costs of treatment, but when on a job, he found it extraordi-narily difficult to meet the DOTS schedule of going to the hospital once a week toreceive medications. Edgar completed five months of treatment before the situationbecame unmanageable:

I have to go to Dr. Calderon to get the pills, each week. I told him before that I had to workin Cochabamba, but he didn’t want to give me the extra pills. So, for this reason, I waswithout medication for two weeks, and I was afraid to go back to Dr. Calderon because Ihad stopped the treatment. . . . I am afraid he will blame me for stopping the treatment. . . .

Like most of the informants, Edgar has struggled to receive TB medications in theface of economic difficulties, an unpredictable work schedule, and a centralizedbureaucratic structure that is not designed to deliver care effectively to someone ofhis occupational and socioeconomic position. The blame that he feels for having“abandoned” treatment has further complicated his ability to return to the TBcontrol program.

DISCUSSION

The nonadherent informants followed in this study participated in many culturallydetermined health beliefs and practices that could be superficially associated withnonadherence. For example, several of the informants visited traditional Aymarapractitioners at the beginning of their symptomatic pulmonary tuberculosis. Twoof the patients accepted a diagnosis of susto as an explanation of early symptomspotentially indicative of pulmonary tuberculosis. A superficial analysis of this datacould suggest that such culture-specific health beliefs and practices are factorsencouraging nonadherence with the TB treatment program.

Upon further analysis, however, the evidence from observation and patient nar-ratives does not support this hypothesis. All informants who utilized the services oftraditional practitioners also indicated that they preferred biomedical approachesfor treatment of tuberculosis. Patients who accepted the diagnosis of susto and theyatiris who diagnosed them maintained that susto was an overlapping conditionwhich did not conflict with the concurrent diagnosis and treatment of tuberculosis.

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Furthermore, patients and yatiris agreed that tuberculosis was a disease best treatedby biomedically trained physicians and pharmacologic agents.

In addition, patients overwhelmingly displayed a familiarity with the micro-bial basis of pulmonary tuberculosis. All of the informants in the study appearedcomfortable with the biomedical model of the disease and the logic behind thetreatment regimen. Furthermore, all of the patients in the study who had not yetcompleted the seven-month regimen expressed a desire to return to treatment anda visible concern that the disease might return in a significantly more dangerousform because they had not adhered to the treatment program. None of these datasupport the hypothesis that nonadherence in this population resulted from cultur-ally determined barriers to treatment or culturally inappropriate communicationbetween doctors and patients.

All informants, however, could provide clear explanations of how underlyingstructural barriers to treatment had influenced their ability to adhere to treatmentregimens. These factors ranged from perceived discrimination and maltreatment byhealth professionals to prohibitively expensive hidden costs of treatment. Patientscould provide direct accounts of how their tenuous position within the laboreconomics of La Paz directly constrained their access to care through limitationsof time and money, and illustrated other means by which conditions of povertyand racism indirectly affected the outcomes of their TB treatment.

The ethnographic data presented here do not support the hypothesis that cul-turally determined factors are the central cause of treatment failure in urbanAymara populations. On the contrary, it suggests the importance of poverty, eth-nic discrimination, access to care, and other structural forces in the productionof nonadherence. In rural Bolivian populations, where linguistic and traditionaldifferences appear to be more significant (Bastien 1992; Hudelson et al. 1995),culturally sensitive education materials may be quite helpful to TB control. How-ever, if the urban Aymara population understands the disease process but is notin a position to access treatment, the dissemination of additional educational ma-terial is not likely to help patients overcome the barriers they face to treatmentadherence. As this study demonstrates, an overemphasis on cultural differencewithout proper exploration of other barriers to health care can obscure the de-terminants of nonadherence in ethnic subpopulations. Or, alternately, it suggeststhat an exclusive focus on an “authentic” culture of difference—typically reducedto “folk beliefs”—overlooks the broader cultures of poverty and discriminationwhich many urban Aymara share with other urban migrant populations around theworld.

There are, of course, several limitations to this study. The explicit alignment ofthe ethnographer under the auspices of the local public health authority has obviousimplications for positionality, which necessarily colored the participants’ accounts.Furthermore, although a rigorous selection protocol was applied, the ethnographic

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materials presented here were drawn from only five participants. Consequently, thispaper should be considered an exploratory ethnographic analysis. Confirmatoryresearch with a larger sample, over a longer time duration, would allow for moredetailed analysis of variation in gender, age, and generation, as well as providemore confidence in the generalizability of results. Nevertheless, even though thedata set gathered here is small in absolute number of participants, it represents arich experience-near account of treatment nonadherence as it is experienced bya culturally and economically marginalized urban community. As such, certaintentative generalizations can be drawn.

One distressing trend in Bolivian TB control has been the attitude in favorof centralization that has informed the implementation of the DOTS program,despite the existence of other possible DOTS models. The current implementationof DOTS requires patients to come to the hospital every day to be observed takingtheir medications for the first phase of treatment. While this may help to solveproblems with nonadherence for those who come to the hospital, the experiencesof informants in this study indicate that mandatory daily visits incur increasedtime and transportation costs for patients with limited means, which can lead toincreased attrition rates from the TB control program. In a population apparentlywell-educated as to the importance of treatment adherence, such a centralizedprogram may be producing more noncompliance than it prevents.

The Bolivian National TB Control Program has made a great step toward low-ering the economic barriers to treatment by providing free medications to thoseenrolled in the program. If the other hidden costs of transportation, consults, andradiography could be reduced for needy populations, perhaps future patients likeEdgar Quispe would be able to finish their course of medications. In spite of thecentralized implementation of DOTS in Bolivia, there is currently some move-ment toward decentralization in the delivery of TB treatments. Antituberculosismedications, previously only available through the central hospital, are now beingprovided to some community clinics to provide more flexibility in delivering careto populations who face logistical barriers to going to the hospital. Communityhealth workers visit the homes of patients and often have a more grassroots under-standing of the difficulties individual patients encounter with treatment regimens.Hopefully, the increasing use of community health workers to deliver and ob-serve adherence with TB medications for patients in the community will provide amore effective means of improving tuberculosis treatment in these urban Aymarapopulations.

ACKNOWLEDGMENTS

Research for this paper was supported by grants and structural support from theDavid Rockefeller Center for Latin American Studies and the Department of So-cial Medicine at Harvard Medical School. In addition, this study would not have

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been possible without the generosity of many individuals, most notably the in-formants, who were gracious enough to open their homes and lives to the author.The active collaboration of the Fundacion San Gabriel, in particular Dr. LieselotteBarragan, Dr. Marcel Loayza, Dr. Carmen Berrios, Dr. Edgar Calderon, and thedistrict community health workers, was crucial to the execution of the researchproject. Dolores Charlay, an Aymara ethnographer based in El Alto, provided in-valuable assistance with fieldwork in La Paz. Project conception and design wasaided greatly by the collaboration of Dr. Guillermo Herrera, Dr. Paul Farmer, andDr. Arthur Kleinman at Harvard Medical School. Thanks also to Dr. Joyce Millen,Elizabeth Dorosh Greene, Kate McGurn, Jeremy Mumford, and the two anony-mous reviewers for Culture Medicine and Psychiatry for their helpful commentsand suggestions throughout.

NOTES

1. All informant names have been changed to protect confidentiality.

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Department of Social MedicineHarvard Medical School641 Huntington AvenueBoston, MA 02115USAE-mail: [email protected]