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Ensnared by AIDS
Cultural Contexts of HIV and AIDS in Nepal
Second edition
David K. Beine
SIL International®
Dallas, Texas
SIL International®
Publications in Ethnography
42
Publications in Ethnography (formerly International Museum of Cultures Series) is a series published jointly by SIL International and the International Museum of Cultures. The series focuses on cultural studies of minority peoples of various parts of the world. While most volumes are authored by members of SIL International who have done ethnologic research in a minority language, suitable works by others will also occasionally form part of the series.
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Cover Photo
Courtesy of Ram Sarraf, The Himalayan Times
© 2014 by SIL International®
ISBN: 978-1-55671-381-1
ISSN: 0-0895-9897
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Contents
Background and theoretical underpinnings
Part One : Background and Theoretical Underpinnings
2.2 AIDS as social construction
3.1 The epidemiological “facts”
3.2 Nepali HIV and AIDS literature
3.3 National HIV and AIDS awareness and prevention programs
3.4 Emerging HIV and AIDS discourses and cultural models
4 : Cultural Models, Schema Theory, and Cognitive Methodologies
4.1 Cultural models—what are they?
4.2 Schema theory
4.3 Schemata—what are they?
4.4 Cultural models of illness and HIV and AIDS
4.5 The limitations of the cultural model concept
4.6 Cognitive methodologies
5.1 Background and methodology
5.2 Ideas about illness
5.3 Perceptions about HIV and AIDS
5.4 Conclusion
6 : HIV and Me—A Discourse Analysis of HIV and AIDS Narratives
6.1 Methodology
6.2 The findings
6.3 Chapter conclusions
7 : Nepali Cultural Models of HIV and AIDS and Underlying Illness Schemata
7.1 Nepali cultural models of HIV and AIDS
7.2 Underlying illness schemata
7.3 Implications of later research
8 : The Making of a Cultural Model
8.1 The role of NGOs
8.2 The role of doctors and policy makers
8.3 The role of the media
8.4 A comparison of cultural models—implications of underlying biological schemata
9 : Conclusions
9.1 Review of the findings
9.2 Implications of the research
9.3 Final issues
Part Four : In Their Own Words
10.1 Sita
10.2 Prabita
10.3 Raju
10.4 Indra
10.5 Akash
10.6 Gopal
10.7 Shoba
10.8 Thuli
10.9 Hari
10.10 Ramesh
Appendix: Focus Group Interview Questionnaire
Glossary of Nepali Terms
References
Preface to the Second Edition
Much has changed in the world of HIV and AIDS over the past ten years. From the medical side, treatments and preventative measures have emerged that have changed the face of the disease. And these changes have not been without effect upon Nepal. Having said that, history and culture, which were impacting the trajectory and form of the epidemic in Nepal ten years ago, continue to do so. In this second edition I update the medical changes worldwide and in Nepal; address the demographic, historical, cultural and political changes (or lack thereof) which continue to impact prevention and treatment programs; and present an update on the current epidemiological situation. And it will be obvious that culture, at least in the context of Nepal, still matters.
The astute reader will notice that the subtext of the book has changed slightly in this second edition. In the earlier edition the title combined the acronyms HIV and AIDS into a single unit (HIV/AIDS). This was convention at that time. Today these two terms are more often separated into two terms, HIV and AIDS, in order to purposively distinguish HIV, the virus that causes AIDS—from AIDS, the dreaded deadly disease caused by untreated HIV. This is often done to disassociate HIV (which is now treatable) from AIDS, which often carries a strong stigma, in part because of is fatal nature. This change in terminology is reflective of the changing cultural model of HIV and AIDS in the West where we have gone from “dying of AIDS” (the old cultural model) to “living with HIV” (the new cultural model). The title of this book, therefore, reflects this wider understanding of HIV and AIDS, even though this is still far from being a reality for many HIV sufferers in Nepal, as we will see later in this book. Likewise, I have attempted to change this convention wherever possible throughout the second edition, retaining the earlier convention only in the case of quotations or where using the latter convention might cause confusion.
Along with great changes in the world over the past ten years, cultural models of HIV and AIDS have begun to shift slightly in Nepal, while at the same time many elements of the earlier model are perpetuated and reinforced. The danger of books is that they can lock our understanding of any phenomenon into the “ethnographic present.” In this second edition I will not only elucidate the earlier model of HIV and AIDS in Nepal, but I will also cursorily comment on the changes I have noticed, both in the national narratives (via media, INGOs, NGOs and doctors) and personal narratives of those living with HIV. It would require a whole volume based on careful research (another forthcoming book I am working on) to fully elucidate the changing cultural model and its constituent components. And finally, in this second edition, I reflect on the remaining problems in the “fight” (to employ a western illness schema) against HIV and AIDS in Nepal.
Preface to the First Edition
He deceived me. He persuaded me, promising to take me to a glittering town. He deceived me, promising to take me on a running motor car. He promised to employ me in the carpet industry and then told me to be happy with an income of one or two hundred rupees. I am a girl of the village and was easily deceived. I got entangled in the threads of the carpet looms. He told me he would take me into another profession. He said “Raxaul,” as it sounded but took me to Bombay. I learned that he had sold me for 12,000 rupees. He pushed me down into living hell.
That didi [sinful woman] uttered sweet words. With smiles she said that my stars would now shine bright, but when I refused, I was beat. Don’t ask me then through what hell I’ve been up till now! I spent nine years in that hell and my life was totally shattered. One day a cold caught me. I found myself with diarrhea and chest pains. One day a doctor came to give me a check-up, the didi gestured and I agreed.
She gave me 2,000 rupees and a train ticket and they sent me home with many incurable diseases. I was not cured and my ailments made me desperate. The blood exam revealed that I have the fatal AIDS.
Alas, my life is reaching an end, and it ends in nothing then. O straight-forward girls of the village, please look at me! Don’t get coaxed in the sweet words of those sinful souls. (Ramesh 1993)
I was once told, “If you want to know the depth of a Nepali’s emotion about a certain experience, ask them to write a song about it.”1 The quote above is a translated stanza from a song written by a Nepali woman about the depth of her experience with life, and ultimately with the disease called AIDS.2 I often found people matter-of-factly telling me their heart-wrenching life stories that broke my heart and left me in a state of emotional disarray and emptiness. It seems that personal emotions are not publicly displayed in Nepali society.
Perhaps, as I assert in the latter part of this book, the responses (mostly unemotional) to their tragic situation is due, at least in part, to their deeply held Vedic worldview of their own anticipated reincarnation. Or perhaps it is due to their underlying attitude of fatalism. Or perhaps, as has been suggested above, it is just their style. Whatever it is, it often perplexed me.
This book is about HIV and AIDS. More specifically, it is about cultural models, particularly the cultural models of HIV and AIDS currently being negotiated in Nepal. It is also about the cognitive illness schemata that underlie and inform these cultural models.3 The way that people make sense of illness is, in part, culturally determined. Existing beliefs and presuppositions shared by a community (cultural knowledge) regarding illness play a significant role in shaping an understanding of newly emerging illnesses in any given culture. This cultural knowledge is organized as cultural models, which are utilized to “make meaning” of new situations such as the HIV and AIDS epidemic. These cultural constructions (cultural models) of illness can also contribute to the spread of the epidemic. HIV and AIDS is a relatively new and rapidly growing problem in Nepal. Little is known about how the populace of Nepal understands the illness, locally known only as AIDS rog4, or about the process taking place to develop a cultural model of HIV and AIDS.
This research, utilizing a cognitive anthropological approach in tandem with a discourse analysis approach, focuses on the meaning of HIV and AIDS in Nepal. The results may have practical application for HIV and AIDS prevention programs in Nepal as well as theoretical implications by testing the cross-linguistic validity of the narrative analysis model. It may also be theoretically important for providing a better understanding of how people incorporate new ideas into their established cognitive systems.
The title for this book, Ensnared by AIDS, comes from the mouths of many of the informants. The Nepali word phasnu, used by many to describe their condition, carries with it the meaning of being ensnared like a bird in a hunting net. For instance, Prabita, lamenting the discovery of her HIV status, told me, “Now I, a free and innocent girl, am ensnared.” Rajina, regretting how she was tricked into marriage and sold into prostitution by a deceitful man, claimed, “He ensnared me, showing me many hollow things.” And Hari, saddened by his fatal condition, said, “I just know that I am ensnared and will probably die.”
Because the research was conducted using the Nepali language, I use Nepali words extensively throughout this book. Since these words may be new to many readers, I provide a glossary of the Nepali terms used. I also include the English meanings in single quotes next to the Nepali word the first time the word is used in each new chapter, as a reminder.
The conclusions of chapter six (a narrative discourse analysis) are drawn from thousands of pages of translated materials. My original notes include (1) a transcription of each of the thirty stories (in the Nepali Devanagri script), (2) a word-for-word English translation below each Nepali sentence, and (3) a free translation rendering it more understandable to mother tongue English speakers. Because the database for this project was so extensive, I have included only the English free translations for each text. Although including these texts in this book necessitates many extra pages, I feel that it is important to hear the voices of those struggling with AIDS in Nepal. After all, this book is ultimately about them and for them.
This book is about AIDS in Nepal. In the end, however, it is really about people. There are many faces of the AIDS epidemic in Nepal, but behind these faces are real people. Many of the storytellers in this book will be dead by the time these words are finally read. Many of them are men and women like you and me, who over the course of this research became good friends. It is my hope that this book will honor them and that it will, in some way, contribute to a lessening of the future personal tragedies of others in the tiny Himalayan nation of Nepal.
Background
Although the current reported number of HIV cases in Nepal is relatively small (just under 21,000) it is widely accepted that a much larger problem lies hidden under these official statistics. Traditionally researchers have focused upon the structural epidemiology of the illness (Mann 1992; Sabatier 1988; Sabatier 1989; Shannon et al. 1991) tracing the spread of AIDS worldwide along trucking routes and through high-risk communities such as commercial sex workers. Researchers once predicted that many of these same structural factors would become major determinants in the development of AIDS in Nepal (Seddon 1995; Suvedi et al. 1994). And in fact, structural factors have played a significant role in the spread of HIV, particularly among high-risk communities in Nepal.
Recently, scholars have begun to focus more attention on the social epidemiology of AIDS (Farmer 1992, Feldman and Johnson 1990; Fleming et al. 1988; Herdt and Lindenbaum 1992; Muir 1991; Schoepf 1990). Several authors (Brown 1993; Green 1992; Taylor 1990) have pushed us beyond the structural epidemiological explanations by adequately demonstrating that cultural beliefs can also be a critical factor in the spread of AIDS. People’s perceptions about AIDS have been found to be crucial factors associated with its spread (Caprara 1993; Shah 1991). These perceptions of the illness, or the “meaning” of AIDS, are socially constructed (Herzlich 1989; Sontag 1988; Treichler 1992) by members of a society and are then developed into a cultural model (Farmer 1994), which is subsequently reinforced by society.
Although some work has been done on HIV and AIDS in Nepal, no one has examined the cultural models and underlying illness schemata that are being used to make sense of HIV and AIDS. This book brings together the results of two major studies designed to identify shared perceptions regarding HIV and AIDS as well as underlying illness schemata that inform these cultural models.
The studies, utilizing traditional ethnoscience methods in tandem with discourse analysis methods, were conducted over a sixteen-month period between January 1998 and May 1999. The primary research sites were the small rural village of Saano Dumre in Gorkha District, and various non-governmental organizations (NGOs) in and around the capital city of Kathmandu. More specific details about the sites, the people interviewed, and the research contexts will be discussed in the following chapters. The use of multiple methods provides a more complete picture of the cultural model of AIDS in Nepal, accurately reflecting the cognitive categories arrived at through cognitive anthropological methods, while better reflecting the multivocalic diversity present in any culturally constructed meaning.
The studies will reveal that there are, indeed, cultural models of HIV and AIDS in Nepal. We will see several cultural models being expressed by various communities in Nepal, but we will also see the emergence of a dominant cultural model of AIDS formed through the weaving together of Western models and schemata with traditional Nepali cultural models of illness and traditional illness schemata. An understanding of these models is crucial as it is these cultural models that people are employing to make sense of AIDS and it is these same cultural models that people use to determine appropriate behavior to exhibit toward those who have HIV and AIDS. And a cursory re-examination of some of these same factors ten years after the first edition of this book was published will reveal that some elements of the cultural model are slowly shifting while others remain the same.
The purpose of this book is to examine the HIV and AIDS situation in Nepal in depth. Although a thorough coverage of the subject necessitates an investigation of the structural factors contributing to the spread of the disease, I will focus primarily on the social side of AIDS in Nepal—in particular, upon the newly emerging cultural models of AIDS and their underlying illness schemata.
Format of the book
This book is divided into four main parts: (1) “Background and theoretical underpinnings,” (2) “The projects,” (3) “The findings,” and (4) “In their own words.” These parts are described below.
Background and theoretical underpinnings
The purpose of part one is to (1) introduce the reader to Nepal (the context in which this study takes place), (2) explore in general the concept of AIDS as both fact and social construction, (3) examine in particular the current AIDS situation in Nepal, (4) introduce the theoretical concepts of cultural models and illness schemata, and (5) introduce the cognitive methodology on which the findings of this book are based.
In chapter one, I briefly introduce the country of Nepal. Many of the facts about her history, economy, educational system and religion have played an important part in fostering the current AIDS situation. Many of these same cultural features have also been influential in the production of cultural models that I will discuss at length in subsequent chapters.
In chapter two, I look at AIDS in particular. AIDS is a biomedical fact. It is also a socially constructed disease. In addition, other factors are making it a socioeconomic disease. The result of the mixing of biomedical fact and social construction is that different meanings are attributed to AIDS from culture to culture. The resultant cultural models are also malleable as the nature of the disease (the biomedical facts) itself changes, or as our socially determined understanding of the disease changes.
In chapter three, I discuss the current AIDS “crisis” in Nepal in particular, including the statistics and prognosis for impact upon the tiny country, and examine the various types of research that have been conducted in Nepal in respect to AIDS. I also introduce the major discourses on AIDS that have been presented by NGOs, the media and others, as well as discuss the various approaches being taken by international aid agencies and local authorities to help with the growing problem. Finally, I introduce the major components of a newly emerging cultural model of HIV and AIDS.
In chapter four, I examine the theoretical frameworks upon which this research is based. I introduce the “cultural model” concept and examine cultural models as both product of and producer of culture. I also introduce the idea of schema theory, examining the various kinds of schemata, discussing what they are and how they are proposed to work, and I introduce recent modifications to the schema concept that inform this research. I also examine the cognitive methodologies employed in two different studies, focusing attention on the value of combining multiple methods in this type of social research.
The background information provided in part one will facilitate a better understanding of the findings (and the implications) of the projects presented in part two.
The projects
In part two, I present the findings of two different studies, which were conducted in tandem, in order to discover the different meanings attributed to HIV and AIDS by various groups in Nepal. The goal of these studies was to discover if there are any widely shared meanings (dominant cultural model) associated with HIV and AIDS as well as to discover underlying illness schemata associated with HIV and AIDS.
The use of multiple methods of analysis in ethnomedical research has been suggested as a way to increase the validity of such research (Browner et al.1988; Stone and Campbell 1984; Viney 1991; Van Gelder 1996). Hence, the methodology followed during this research, approaching the meaning of AIDS in Nepal, included both a cognitive ethnomedical approach as well as a discourse analysis approach. Two major studies, using the two different approaches, were conducted in order to study the emergence of various cultural models of AIDS in Nepal and their constituent elements.
In chapter five, I present the findings of an ethnosemantic study designed to elicit the conceptions regarding HIV and AIDS among a rural Nepali community. The investigation of rural conceptions of AIDS took place within the larger context of a study on conceptions of illness in a Nepali village. I present the full study here as elements of wider illness schemata are identified, which transfer to HIV and AIDS as well. Through this study we can see how traditional concepts have influenced understanding of the new illness known as “AIDS rog.” This study, using primarily an ethnomedical cognitive approach, ultimately sought to determine whether a salient cultural model of HIV and AIDS still exists among the people of a rural Nepali village. The village of Saano Dumre in Gorkha District was selected as the study site. Besides illuminating cultural models of HIV and AIDS, this study also examines the apparent changes that have taken place in regard to health beliefs over the past twenty-five years. Using the methods of cognitive anthropology, I explore several health-related topics including categories of illness, treatment-seeking order, factors influencing health, perceived causes of illness (including factors which facilitate a greater susceptibility to illness), ideas about transmission of illness, villagers’ perceptions about what has changed over the past twenty-five years, and ideas regarding the efficacy of traditional and Western medicines.
Chapter six presents the findings of a narrative discourse analysis project conducted among HIV-positive persons in Nepal. Thirty texts were collected from HIV-positive persons in both urban and rural settings. Besides illuminating elements of the dominant cultural model that have emerged as a result of the various governmental prevention campaigns, these narratives also express common themes of shared meanings of HIV and AIDS not held by members of the wider culture. Furthermore, the texts demonstrate that a slightly different understanding of HIV and AIDS is held between rural and urban dwellers regarding the disease and between urban males and females. These common themes, as well as the illness schemata that underlie these narratives, are the focus of the chapter.
In chapter seven, I examine the emerging cultural models intimated by the two studies. We will see several sub-group cultural models being expressed by various communities in Nepal, but we will also see the emergence of a dominant cultural model of HIV and AIDS. I will also further examine the underlying illness schemata that are made evident through the findings of both studies. An understanding of the various cultural models (and their constituent schemata) is essential because it is these cultural models that people employ to make sense of AIDS and it is these same cultural models that people use to determine appropriate behavior to exhibit toward those who have HIV and AIDS.
The findings
In chapter eight, I examine the making of the dominant cultural model of HIV and AIDS in Nepal. I will focus mainly on the creation of this model, since it is being disseminated widely and seems to be having the greatest impact in shaping people’s understandings of HIV and AIDS, and I expect this cultural model will continue to do so in the coming years. We will see the strong influence of Western cultural models (and schemata) upon the dominant cultural model. However, we will discover that cultural models are also influenced by biology. I will examine the role of NGOs, doctors, policy makers and the media, as well as underlying biologically based schemata in the making of a dominant cognitive model of HIV and AIDS in Nepal. We will see that the resultant dominant cultural model of HIV and AIDS in Nepal is a type of hybrid based on the combination of the traditional and the new (especially when traditional ideas reinforce the new ideas) as well as a product of universal biology.
Chapter nine will conclude the analytical portion of this book by summarizing the findings, examining the implications of the findings, and introducing a few remaining issues that intrigue me. In particular, I will address the issue of the negative impact of current foreign aid projects, make some recommendations for future prevention efforts and discuss why I encountered less depression than expected among AIDS sufferers.
In their own words
I reserve the last chapter of this book, chapter ten, for those struggling with AIDS in Nepal to tell their own stories. Quite often in this type of social research the voices of the research participants are never heard. Their stories are real. And they are tragic. These people’s stories often left me empty and saddened at the hard circumstances of their lives. It is my hope that these stories from their own mouths will compel readers to consider what part they can play in helping to curb the growing HIV and AIDS pandemic. These stories represent only thirty struggling voices. There are thousands more like them in Nepal alone. And millions more like them around the world.
Acknowledgements
I would be remiss if I did not thank the many that helped me bring this book to completion. First of all I would like to thank Mr. Dwarika Shrestha for his friendship and hard work on this project. Without his able assistance during the research phase, this project would not have been remotely possible. Next, I would like to thank Dr. Ganesh Gurung and the Department of Anthropology at Tribhuvan University for their sponsorship of this project. I would also like to thank Dr. Nirmal Man Tuladhar and the Center for Nepali and Asian Studies for their most gracious help in many areas. I would also like to thank the entire membership at Prerana for their most gracious cooperation. Further, I would like to thank Rajendra Shrestha at Freedom Center; Mrs. Amina Lama at Maiti Nepal; Mrs. Shanta Sapkota at Peace Rehabilitation Center [the entire staff at ABC Nepal; Dr. Bhadra at B. P. Memorial; Dr. Bal K. Suvedi and Dr. Bhoj Raj Joshi of the Nepal Medical Council; Shiba Hari Maharjan of LALS; Dr. Vijaya Lal Gurubacharya and Dr. B. B. Karki of the National Center; Sally Smith of the United Mission to Nepal; Ms. Prakriti K. C. and Dr. Mark Zimmerman at Patan Hospital; all the staff at Amp Pipal Hospital, Gorkha District and all of the residents of Saano Dumre, Gorkha District. I am indebted to the above individuals for their assistance. Without their help many of the goals of this project could never have been realized.
I would also like to thank the members of my doctoral committee, Dr. Linda Stone, Dr. Barry Hewlett, and Dr. John Bodley for their help in improving this manuscript. I would also like to thank my wife and children for supporting me through the long grueling process.
Finally, I wish to thank those men and women who shared with me their stories. May the details of their lives that make up this book bring about a solution to the looming problem of HIV and AIDS in Nepal.
Abbreviations
AIDS Acquired Immunodeficiency Syndrome
ART Antiretroviral Therapy
CDC Center for Disease Control
CMA Critical Medical Anthropology
FHI Family Health International
FSW Female Sex Worker
HIV Human Immunodeficiency Viruses
HSCB HIV and AIDS and STI Control Board
IDU Injecting Drug User
INGO International Non-governmental Organization
IOM Institute of Medicine
IS Idiosyncratic Schemata
KAB Knowledge And Behavior
KAP Knowledge And Practices
MARP Most At Risk Population
MCP Multiple Concurrent Partners
MDP Millenium Development Goal
NAC National AIDS Council
NACC National AIDS Coordination Committee
NAP National Action Plan
NCASC National Center for AIDS and STD Control
NSP National Strategic Plan
PEMA Political Economy Medical Anthropology
PEPFAR President’s Emergency Plan for AIDS Relief
PIMS Primitive Innate Mental Schemas, or universal schemata
PLHIV People Living with HIV
PWA Person with AIDS
PLWHA People living with HIV and AIDS
SAE Semi-autonomous Entity
STD Sexually Transmitted Disease
STI Sexually Transmitted Infection
USAID United States Agency for International Development
VDRL Venereal Disease Research Lab
Part One : Background and Theoretical Underpinnings
1 : Nepal
MAP Figure 1.1 Map of Nepal, map no. 4304, January 2007 (United Nations Publications Board, used by permission).
Many aspects of history have played a part in formulating and fostering the current AIDS situation in Nepal, including population demographics, economy, geography, the educational system, medical systems, and overriding religious philosophy, as well as the current political structure. Because of the relationship of these factors to the current AIDS situation, they are introduced in this chapter.5 Nepal is a small, landlocked nation sandwiched between Chinese-controlled Tibet and India (fig. 1.1). With a population of 26.6 million (Central Bureau of Statistics 2012), the country of Nepal is best known for its legendary Himalayan mountain range. It boasts nine of only fourteen mountains in the world over eight thousand meters (26,247 feet), including the tallest, Sagarmatha (the Nepali term for Mt. Everest). The country also claims tropical jungles (currently being lost at an alarming rate) which are home to Bengal tigers, elephants, and rhinoceroses. The diversity of landscape mirrors the collage of cultures. The country is home to more than a dozen cultures—each with its own language, with multiple dialects, from three major ethnic groups,6 which have settled over thousands of years, through sequential historical migrations (Savada 1991; Anderson 1987).
1.1 A brief history of Nepal
1.1.1 Pre-history: ?–500 B.C.
Archaeological finds from the Neolithic era demonstrate that this region was occupied, but little is known about these early settlers. Legends suggest that they were the cow-herding Gopals or Ahir tribes, but this remains to be confirmed by archaeologists.
1.1.2 Ancient Nepal: 500 B.C.– 700 A.D.
The first historical inhabitants of the Kathmandu Valley were the Kirati, a people of Mongolian origin following a proto-Hindu religion.7 The Kirati settled the Kathmandu Valley and established small settlements with limited central authority. These eventually grew into a powerful kingdom that saw the reign of twenty-nine kings. The kingdom was economically strengthened by trade with countries as far away as Sri Lanka and was at its zenith in the fourth century B.C. Then the Khasa, pastoral Aryan tribes who had migrated into northwest India between 2000 and 1500 B.C., began to slowly inhabit the Terai region, which today is part of Nepal. These tribes (following a Vedic Hindu religion) grew into confederations of tribes or small kingdoms that were often at war with one another. From one of these small kingdoms of the Terai came Prince Siddhartha Gautama (the Buddha), whose followers and missionaries carried the new Buddhist religion as far as Mongolia to the north (crossing Nepal and Tibet en route) and Sri Lanka to the south. Buddhism was established in the Kathmandu Valley and throughout most of Nepal. It added unique features to the Kirati and Khasa cultures of modern-day Nepal such as a belief in the divinity of the monarchy.
About 300 A.D. the Licchavis (a Khasa tribe from northern India) invaded Kathmandu, driving out her Kirati population. The Kirati were pushed to the east where they settled in the hills as simple farmers. Today’s Rais and Limbus (two of Nepal’s indigenous groups) trace their ancestry to them. The Licchavis invasion brought with it one of the most significant and lasting changes to Nepali culture, namely the Hindu caste system. The Licchavis dynasty was centered in Kathmandu but its widespread roaming armies managed to produce the first true Nepali state. It is also certain that the Licchavis looked back to their Indian homeland, which exerted a powerful cultural influence upon the people of Nepal, especially in terms of their Hindu religion (which was syncretized with the established Buddhism and leftover animism) and art. By the end of their dynasty in 750 A.D., the political system mirrored that of the Rajas of India: they were absolute monarchs in theory but actually interfered minimally in their subjects’ lives due to the mountainous geography. The economy during the Licchavis dynasty was based mainly on agriculture. The king established a system of hierarchical political leaders that descended to the local level while it allowed the dynasty to maintain control of the wider area. This political system would later (i.e., in the late twentieth century) serve as a model for the political development of modern Nepal. The Licchavis also continued the tradition of trade with Tibet and India (including the export of Buddhism with the marriage of one of her Licchavis princesses to the king of Tibet, whom she converted).
1.1.3 Medieval Nepal: 750–1750
Around 750 A.D. Nepal began to enter what some have called its “Dark Ages,” about which little is known. It seems there were constant struggles among prominent families and royal lineages (still all Rajputs) for the throne, and leadership changed several times during this period of instability. Kathmandu was also invaded twice by growing foreign powers during the early years of this period (Tibet in 705 A.D. and Kashmir in 782 A.D.), but both attempts proved futile. The most profound change upon Nepali culture that can be traced to this time period is the move away from Buddhism on the part of the kings toward a stronger Vedic-Hindu devotion.
In 1200 the Mallas (Khasa groups who had ruled kingdoms in Rajasthan from the early 600s) began to inhabit Nepal and (perhaps through marriage or political struggle) assumed the throne. The rule of the early Mallas was far from peaceful. North-Indian Malla kingdoms plundered Kathmandu five times between 1244 and 1311. Worse, an earthquake devastated the valley in 1245, killing a third of its populace. Meantime, Hindu kingdoms of northern India were being broken up by the invading Muslims, sending waves of Hindu migrants into Nepal who established dozens of tiny hilltop kingdoms (forty-six in west and central Nepal). A rival Malla kingdom from western Nepal also attacked Kathmandu six times in an attempt to gain control and the city was invaded in 1345 by Muslim sultans from Bengal who plundered and destroyed the city. The result of the medieval period was the dissolution of the Nepali state that the Licchavis had founded, to a collection of feudal hilltop kingdoms scattered throughout the region that were constantly at war with one another.
1.1.4 The re-unification of Nepal: The Shah dynasty 1750–1846
It was from one of these tiny hilltop kingdoms (Gorkha) that Prithvi Narayan Shah arose as king to conquer the surrounding kingdoms, finally conquering the three kingdoms of the Kathmandu Valley twenty-three years later. Thus, Shah emerged as the king of a newly unified Nepal in 1768 and implementing a policy of protectionism, expelled all foreigners, a policy that remained in force until 1951. The Gorkha dynasty expanded, annexing parts of Kashmir (under British control) and Tibet (under Chinese control) to the new state of Nepal. Nepal’s excursions into Tibet bothered China, who sent troops to surround the Kathmandu Valley. The Nepali king appealed for help to the British, who were then given their first chance to visit the country, but the dispute with China was inadvertently solved without British intervention. Then in 1810, the British, bothered by further expansion of Nepal into British territory, itself went to war with Nepal. The war lasted six years and was devastating to Nepal, whose borders shrank dramatically as territory was given up to the British. As a condition of the Treaty of Friendship, which ended the war, a single British official was allowed residence in Nepal, although he was forbidden from traveling outside the valley.
1.1.5 The Ranas: 1846–1951
In 1846 the shrewd army general Jung Bahadur Rana accomplished a military coup, establishing himself as prime minister and reducing the king to a prisoner in his own palace in a puppet monarchy. He later declared himself king and turned his interests solely to the opulent development of his own family’s estate. The hereditary prime ministership established by the Rana regime lasted until 1951. It was a period of time when, to quote one historian, “the rest of the country stayed frozen in the middle ages” (Burbank 1992:24).
1.1.6 The return of the Shahs: 1951–1990
In 1947, Nepal witnessed the first open political protest against the Ranas. In 1951, the puppet king Tribhuvan (of the Shah line) left the palace ostensibly for a picnic but instead sought asylum in the Indian embassy and escaped to India. Meantime, the Nepali National Congress (NCC), an outlawed opposition party, took control of the Terai (the southern region of Nepal). The Ranas, knowing their days were numbered, formed an interim government with the NCC and King Tribhuvan was returned to Nepal, promising democracy. Although he died shortly thereafter, Tribhuvan’s son Mahendra oversaw the first democratic elections in 1959. A year later, frustrated with the corruption and chaos of the newly elected officials, Mahendra again took direct control and the newly elected politicians were exiled to India. Mahendra established the Panchayat, a system where the prime minister, the cabinet, and local government officials were chosen by the king, and in which criticism of the monarchy was a criminal offense. This system mirrored the earlier Licchavis system of government.
Mahendra’s son Birendra ascended the throne in 1972, carrying on the direct-rule policy of his father. He also continued the Panchayat system of government. Strong opposition to the Panchayat government throughout the 1970s led King Birendra to call for a national referendum in 1980. The referendum gave voters the opportunity to support or reject the Panchayat system of government. A very small majority (55%) voted to retain the Panchayat form of government. The narrow margin of victory suggested that many were still unhappy with the current political system and the country witnessed growing protests to Birendra’s reign throughout the 1980s.
1.1.7 Democracy, civil war, and Federal Democratic Republic: 1990–present
In 1990, the people of Nepal, inspired by the fall of communism throughout Eastern Europe and the Soviet Union and motivated by the worsening economic conditions at home (caused largely by a trade dispute with India), began violent pro-democracy demonstrations. The political unrest grew and the violence increased until May 1990, when the king agreed to end the Panchayat system and establish a representative democracy (although it retained a constitutional monarchy). The first free elections were held a year later in 1991.
The years since the nation’s first democratic elections can be understatedly characterized as politically unstable. The centrist Nepali Congress party won the first multi-party elections in 1991 and the Communists became the leading opposition party. Then in 1994, mid-term elections were called after the ruling Congress government lost a parliamentary confidence vote, resulting in a hung parliament, and the Communists, who emerged as the single largest party, formed a minority government. Then the minority Communist government soon fell and was followed by several successive weak coalition governments. All of these governments recognized a constitutional monarchy, retaining earlier ties to the crown within the political system.8
In 1996, spurred on by their frustration with the inability to affect change through the political process, one group of the Communist party splintered off to create the Communist Party of Nepal (Maoists) and subsequently declared a “Peoples War,” which decimated Nepal’s infrastructure and economy and paralyzed the country over the next decade. The civil war, which cost the country over fifteen thousand lives with countless others missing, tortured or displaced, lasted for ten years until the signing of a UN-led peace accord between the government of Nepal and the Maoists in 2006.9 The country has yet to fully recover.
The years between 1996 and 2006 saw two parallel governments in operation: the unstable government of Nepal (which mainly operated in a vacuum from within the Kathmandu Valley) and a parallel Maoist government that clandestinely operated throughout most of the rest of the country. Regarding the former, the Nepali Congress won an absolute majority of seats in parliament in 1999 and formed a majority government, with Krishna Prasad Bhattarai as the prime minister. An internal power struggle soon ensued within the Nepali Congress party, however, and led to the ouster of Bhattarai and his replacement by his long-time rival within the party, Girija Prasad Koirala, in March 2000. This government lasted little over a year when Koirala resigned in July 2001 and was replaced by his rival Sher Bahadur Deuba.
In June 2001 a national tragedy threw the already fragile central government (which still held loyalties to the crown) into further nebulousness. King Birendra (who still held much political currency), Queen Aiswarya, and seven other members of the royal family were killed by Crown Prince Dipendra, who was reportedly angered over his parents’ choice of his arranged marriage. The crown prince then allegedly shot himself as well and within days Birendra’s brother Gyanendra assumed the throne as king of Nepal.10
In May 2002 the country was thrown into further political uncertainty. The king dissolved parliament upon the recommendation of Prime Minister Deuba, who had been threatened with censure by his own party for supporting the extension of an official state of emergency. After a short one-week direct rule by King Gyanendra, Lokendra Bahadur Chand became prime minister in October 2002, followed by Surya Bahadur Thapa (2003–2004) and Sher Bahadur Deuba again (2004–2005). Then, on February 1, 2005, citing incompetence by the central government to properly manage the ongoing Maoist insurgency, King Gyanendra suspended the constitution and once again assumed direct authority. The king’s action sparked massive public protests, now referred to as Loktantra Āndolan ‘Democracy Movement’.11 Just over a year later he buckled under pressure, restoring the previous parliament on April 24, 2006. Girija Prasad Koirala was elected as prime minister. One of the first orders of business taken up by the newly reinstated parliament was a promise to hold elections within a year for a new parliament that would take up the task of writing a new constitution and usher in a new political era for Nepal. Three days later, on April 27, the Maoists announced a unilateral truce. And on May 1, Maoist leader Dr. Baburam Bhattarai acknowledged that if the Constituent Assembly (CA) elections were found to be free and fair, they would abide by the results. The Maoists were again ready to re-enter the political process of Nepal.
After two postponements in 2007, the long awaited Constituent Assembly election was finally held on April 8, 2008. The Communist Party of Nepal (Maoists) won 220 out of 575 elected seats and became the largest party in the CA. On May 28, 2008, the newly elected Constituent Assembly approved a temporary constitution abolishing the Hindu monarchy, declaring Nepal a secular state, placing the army under the command of the parliament rather than the king and stripping the king and his family of all royal privileges. The royal family would now live as equal citizens of the land, paying taxes and being subject to its laws. Nepal, the last remaining Hindu kingdom in the world, was now officially declared the Federal Democratic Republic of Nepal.
Over the next four years the elected Constituent Assembly would itself be caught in a constant quagmire of political in-fighting, positioning and bickering, and more prime ministers would come and go. Girija Prasad Koirala continued in the role as prime minister of the new Federal Democratic Republic of Nepal from May to August 2008 before being forced to resign. Then Maoist strong-man Prachanda was elected as prime minister by the Constituent Assembly in August of that same year and was expected to oversee the transition from monarchy to republic but he was forced to resign in May 2009 after his controversial sacking of a Nepali army general. He was followed by Madhav Kumar Nepal of the Communist Party of Nepal (Unified Marxist-Leninist), who resigned in 2011 amidst further serious political deadlock.12 He was followed by Jhala Nath Kanal (February 2011–August 2011), and finally Maoist second-in-command Baburam Bhattarai (August 2011–March 2013). After its failure to draft a new constitution (having been given two years and two more one-year extensions to do so), the Constituent Assembly was finally dissolved on May 28, 2012. New elections were called for, and the date of November 2012 was set, in hopes of electing new members to a new Constituent Assembly that all hoped could get the job done.13 In the interim, Baburam Bhattarai stayed on as head of a “caretaker government,” the elections were again postponed, and on March 14, 2013, Chief Justice Khil Raj Regmi was sworn in as the head of a new “interim election government” tasked with carrying out the election process. This is where the process sits as of the publication of this book.
One of the most devastating effects of all of this political turmoil is a loss of hope for the future of Nepal. The general public is very frustrated with the gamesmanship being played at a time when the politicians should be engaged in nation building. One commentator accuses the Constituent Assembly of “procedural maneuvers instead of being honestly involved in drafting a proper constitution of the country and building the nation for which they were elected” and Nepal’s political process of “’forever recycling leaders’ [the same old politicians] that haunts the house of Nepal from the fifties” (NACSS 2009). Reflecting on the implications to healthcare, another commentator concludes that “the superficial changes in political structure have not brought about any changes in the life of ordinary people” and that “the state of health service development is no way different now than it was during the active [civil war] conflict period” (Ghimire 2011). What happens next will ultimately be the domain of the historians. One thing is universally accepted, however, namely that further political instability will only further detour the prevention and treatment of HIV and AIDS in Nepal.
1.2 General cultural features
Many aspects of Nepal’s current-day cultural features have been shaped by elements of her past history. And many of these same general features play a role in shaping and promoting the HIV and AIDS epidemic in Nepal. In the remainder of this chapter I will discuss many contemporary aspects of Nepal’s culture, focusing cursorily on the resultant impact on the spread of HIV and AIDS in the former Himalayan kingdom. Some of these factors will be taken up again more at length in subsequent chapters.
1.3 Population demographics
David Seddon (1995:4) has commented that many of the demographic characteristics of Nepal play an important role in determining the pattern of development of the HIV and AIDS epidemic in the country. According to the latest figures available, Nepal’s population is now 26.6 million, of which 33 percent are under the age of fourteen, 62 percent are between age fifteen and sixty-four, and only 5 percent are over age sixty-five. The population growth rate is 1.35 percent and the sex ratio for the total population is 0.94 male/1 female (NPHC 2011). The latest estimated birth rate is 21.85 births/1,000 population and the death rate is 6.75 deaths/1,000 population. Infant mortality is listed at 43.13 deaths/1,000 live births and life expectancy is 66.51 years for the total population. The total fertility rate is 2.41 children born per woman (CIA 2013). Later in this book we will see how these population demographics combine with other key characteristics (such as the amount of arable land), to “push” people to migrate, which increases their risk factor for contracting HIV and AIDS, further facilitating the spread of HIV and AIDS in Nepal.
1.4 Economy
Although Nepal has seen some statistical improvement in its economic condition since the first edition of this book was published a decade ago, the country remains one of the world’s least developed nations. Nepal is listed as 157/187 (30th poorest) in the Human Development Index Rankings (UNDP 2013), with a Gross Domestic Product (GDP) per capita income of $1,300 and approximately one quarter of its population still living below the poverty line (CIA 2013). Nepal is mainly an agrarian society where nearly 75 percent of the population is economically dependent upon agriculture, which makes up over one-third of Nepal’s GDP (CIA 2013). Given the declining ability for Nepalese to meet their own basic agricultural needs due to the growing population and land degradation, future economic prospects are poor. Nepal is an underdeveloped nation with strong economic ties to India as a result of Nepal’s geographic proximity, historical relationships, and landlocked status. Also, Nepal has historically relied heavily upon foreign aid to meet her needs. Foreign aid (as a percentage of the GNP) had grown from 8 percent in 1984 to nearly 13 percent in 1987 (latest figures available, Savada 1991). Likewise, foreign aid accounted for 64 percent of the development expenditures between 1956 and 1990 (latest figures available, Savada 1991). And latest figures estimate foreign aid to make up 5–6 percent of the GDP, 55 percent of Nepal’s capital expenditure and 25 percent of its total expenditure (Dahal 2008).
To understand Nepal’s present economic condition it is necessary to understand its economic past. Nepal, under the despotic leadership of the rogue prime minister’s hereditary line (the Ranas), practiced a protectionist policy of isolationism and was cut off from the rest of the world for over a hundred years (1846–1950). Karan and Ishii (1994) observe:
Nepal’s chaotic political development in the first half of the nineteenth century precluded any real attention to the economic needs of its people. When autocratic stability was imposed by the prime ministers of the Rana regime after 1846, the administrative structure was reinforced to provide economic aggrandizement for the extensive Rana family, to the extent that Nepal’s revenues, land ownership, and economic opportunities were almost totally the prerogatives of the ruling family. (Karan and Ishii 1994:1)
Prior to this period Nepal had also suffered under the consequences of a two-year war (1814–1816) with the British (Anderson 1987:20–23), which had been preceded by the consolidation (through warfare) in 1769 of several tiny hilltop kingdoms into the Kingdom of Nepal under the leadership of Prithvi Narayan Shah (EIU 1996:71). It was King Prithvi Narayan Shah who first established the modern nation-state known today as Nepal (Savada 1991:15–19). Nepal, therefore, had suffered the consequences of underdevelopment (as a result of political instability and despotic rule) for nearly two hundred years. Blaikie, Cameron, and Seddon (1979:25) observe that “Nepal had no economic planning of any kind prior to 1951.”
The year 1951 saw the overthrow of the Rana government and the return of the rightful royal monarch to the throne. King Mahendra Shah took control of Nepal in 1951, ending its “virtual economic seclusion” (Johnson 1983:155) and marking Nepal’s emergence into the modern world. Shah threw Nepal’s doors open to the outside world and attempted to lift Nepal from its poverty by guiding the revitalization of the country through its introduction into the global community as a fully functioning economic member (Bista 1991:1). Nepal’s economy, however, was still “rooted in the medieval past” (Karan and Ishii 1994:1).
Since 1951, Nepal has pursued various economic strategies with limited success (Bista 1991:1; Savada 1991:107). In 1955 the government announced the first of several five-year economic development plans (Uppal 1977:17; Lohani 1984:181; Karan and Ishii 1994:1) designed to facilitate economic and social development. However, by the mid 1990s “the development strategies introduced in the 1950s and 1960s had not had the results predicted by their advocates” (Schloss 1983) and Nepal “had not advanced economically in the last 45 years” (EICU 1996:79). Although the last decade has certainly seen some statistical economic improvement, many would contend that the civil war actually set Nepal’s economic development back a decade and that any statistical improvement noted has mostly been limited to the capital city of Kathmandu.
Bikaas is the Nepali word meaning ‘development’. Bikaas has been a major theme for Nepal ever since it opened its doors to the world in the 1950s. At that time Nepal quickly adopted an attitude toward economic development that was intended to raise it out of its poverty and bring it into the world economy. Despite the attempts, Nepal remains one of the least developed countries (LDC) in the world.
Economic development has taken various forms in Nepal in the last half-century, which have received reproach from multiple critics. Several authors stress the negative effects of economic development models upon Nepali culture (Pandy 1992; Pigg 1993; Pigg 1995b; Shrestha 1993; Zurick 1993) and upon the environment (Bell 1994; Ecologist 1993; Economist 1993; Hausler 1993; Nicholson-Lord 1994; Sill 1991; Singh 1993). To be fair, however, Schloss (1983:1) points out that in evaluating the economic and political consequences of the development paradigms pursued by Nepal over the last fifty years, we must realize that although the results of economic development methods followed throughout the eight five-year plans have had only a minimal impact upon most Nepalis, “it is also evident that no [emphasis his] development strategy would have done any better without the development of these basic infrastructure [those pursued under the first five plans] programs. Kathmandu made the right choice in the 1950s.”
Schloss also tells us “it is only now that alternative options on growth models are feasible” (1983:1). Recently international planners have begun to examine the problems created by the development strategies pursued and have begun to look at sustainable solutions to the issues raised (Gevers 1991; Zimmerer 1991; Zurick 1992). The government of Nepal has been slow to respond to these concerns but some headway is now beginning to be forged. It is clear, however, that Nepal still has a long way to go. As discussed further in chapter three, many aspects of Nepal’s economy have created various push/pull factors that have, in turn, created greater exposure to the wider world. Unfortunately, this has also created a greater exposure to HIV and AIDS.
1.5 Geography
Although much of Nepal’s underdevelopment is owed to history, much also is owed to her topography. The area of Nepal is 147,181 square kilometers (56,136 square miles), approximately the size of Tennessee (Guido-O’Grady 1995). In just over one hundred miles (as the crow flies), Nepal’s altitude climbs from about two hundred meters (685 feet) in the south to over 8,800 meters (29,035 feet) on the peak of Mt. Everest in the north (Burbank 1992:8). According to recent figures (CIA 2013), only sixteen percent of Nepal’s land is arable. Lohani (1984) divides Nepal into three topographical and ecological zones: (1) the mountains (the northern third of the country), which are sparsely populated (10% of Nepal’s population) and difficult to farm (5% of the total cultivated land), (2) the mid-hills (the middle area of the country), which exhibit a higher population density (53% of Nepal’s population live here) and low agricultural yields on terraced farms, and (3) the Terai (the lower third, bordering India), where population density is lower (37% of Nepal’s population) and agricultural productivity higher (65% of cultivated land).14 As can be noted from these figures, cultivation in the mid-hills is less productive per capita than in the Terai, where the land is more suitable for farming and the population less dense. One publication suggests that “the difficult topography of the country has posed a serious problem in transporting and marketing agricultural products” (EIU 1996:78). Steep terrain also exacerbates deforestation and erosion.
Perhaps more significant than topography is Nepal’s status as a landlocked country. According to Blaikie, Cameron, and Seddon (1979:12), sixteen of the twenty-five least developed countries in the world are landlocked. There seems to be a link between a nation’s being landlocked and its status as a least developed country. According to several authors (Blaikie et al. 1979; Karan and Ishii 1994; UN 1993), Nepal’s landlocked situation has also added significantly to its economic woes. Karan and Ishii (1994) make the following observation:
As a direct result of its disadvantageous geographical situation [landlocked], Nepal has experienced difficulties and restrictions in its trade and development. Its foreign trade is largely dependent on transit facilities provided by India. The ever-increasing costs of transit and transportation have led to higher-priced imports and exports. The consequences of the landlocked situation is difficult to quantify, but Nepal’s lack of access to the sea is compounded by its remoteness and its isolation from world markets, which are among the reasons for its relative poverty. Overall growth, export expansion, and the utilization of foreign capital resources generate demands for international transport services. Greater difficulties and the cost of these services constitute an extra hurdle for Nepal’s development. (Karan and Ishii 1994:5–6)
Many aspects of Nepal’s geography make growing enough to feed one’s family and earning a sufficient living difficult. Insufficient food supply, in turn, pushes people out of the villages to seek supplemental employment in larger cities or other countries where they are more vulnerable to lifestyles that subject them to HIV and AIDS.
1.6 Education
Although primary education is compulsory and has been provided free since 1975, only 52 percent of primary school age children were enrolled by 1984 (Savada 1991:94). This figure represented 70 percent of the primary school age boys and only 30 percent of the primary school age girls at that time. At the secondary level, only 18 percent of school age children were enrolled by 1984. Recent reporting of the UNDP’s Millennial Development Goal Indicators regarding school enrollment demonstrates a massive improvement on these figures to a current net enrollment rate of 94 percent in primary education and a literacy rate of 86 percent among persons of ages fifteen to twenty-four (UNDP 2013). Despite the dramatic improvement from the 1970s, overall literacy rates countrywide remain lagging. Current statistics (CIA 2013) estimate the literacy rate for the total population to be 60 percent. And low literacy levels countrywide have led to a problem for educators (since many prevention strategies rely on literacy). Gender, geography, and caste also continue to play a part in who gets educated in Nepal. Countrywide, the literacy rate is 48 percent for females while it is 73 percent for males, indicating a continuing gender divide (CIA 2013). Beyond gender, urban literacy rates are 77 percent while rural rates are 57 percent (Bureau of Statistics 2011). And Dahal (2008) has demonstrated a remaining significant differentiation in literacy rates according to caste affiliation as well. Savada considers social class (mainly defined in Nepal by caste) historically as a limiting factor to education in Nepal and writes:
Despite general accessibility, education still nonetheless primarily served children of landlords, businessmen, government leaders, or other elite members of the society, for they were the only ones who could easily afford to continue beyond primary school…Higher caste families could afford to send their children overseas to obtain necessary degrees… Higher caste families also had the necessary connections to receive government scholarships to study abroad. (Savada 1991:97–98)
According to the People’s Awareness Campaign Nepal, there are now over forty-nine thousand schools (including higher secondary), 415 colleges, five universities, and two academies of higher studies served by over 222,000 teachers across the country (PACN 2011). During the 1980s it was reported, however, that only 60 percent of the primary teachers and only 35 percent of the secondary teachers have had formal training (Savada 1991). These are the most current figures available.
The curriculum in Nepal’s schools has been greatly influenced by models used in the United States. A national curriculum was developed with the assistance of the United Nations Educational, Scientific and Cultural Organization (UNESCO). Savada (1991:96) states:
The goal of primary education was to teach reading, writing and arithmetic, and to instill discipline and hygiene. Lower secondary education emphasized character formation, a positive attitude toward manual labor, and perseverance. Higher secondary education stressed manpower requirements and preparation for higher education. National development goals were stressed through the curriculum.
Regarding the promotion of “a positive attitude toward manual labor” as an early goal of the primary education model as noted by Savada above, Bista (1991) identifies a much stronger resident Nepali cultural feature that works to counter this value toward manual labor among the educated. He writes,
Scholarship in the Sanskritic tradition is associated with privilege and never with labor. Education is traditionally the prerogative of the upper classes; to be educated is a powerful symbol of status. Education is not seen as a means of acquiring skills that can be used productively to secure economic prosperity but is seen as an end in itself which once achieved signifies higher status… To become educated is to be effectively removed from the workforce. (Bista 1991:5–6)
Or to put it bluntly, once hands have taken up the book they should never again touch the plow. Bista concludes that such cultural features of Nepali society “are retarding and diminishing its efforts to develop” (Bista 1991:1). David Watters (2011), observing the impact of this cultural belief on the rural youths sent off for education from far-western Nepal, writes, “Many students returned home and became thugs, perfecting the criminal practices they had witnessed in the towns” and “most honest, hardworking villagers [and here he is referring to the Tibeto-Burman Kham people who are not willing to give up manual labor for the sake of an education as the Indo-Aryans are] were thus understandably wary of Nepali education and wanted no part of it.” This is a remaining cultural feature that is inhibiting Nepal’s progress and yet few have ventured to address it as it relates to education paradigms.15
Another little-discussed (and possibly related) problem regarding education is the impact that the form of educational curriculum had upon the Maoist insurgency in Nepal. The curriculum in Nepal as noted above focuses heavily upon the three Rs (reading, writing and arithmetic) at the expense of a focus upon a more village-appropriate education (perhaps more technical or vocational in nature). Thus, rural youths were educationally trained for types of jobs that simply were not available in the rural areas of Nepal. And fewer and fewer of these types of jobs were available in the city either, as unemployment and oversupply skyrocketed. As a result, frustration rose among the well-educated rural youth toward the existing conditions. This frustration, in turn, led to sympathy for the Maoist message. And many well-educated rural youths joined the Maoist movement in response.
The “Maoist problem” had a major impact on the spread of HIV and AIDS in Nepal in many direct and indirect ways.16 The most obvious impact was that during the conflict, many of the rural schools were forcibly closed by the Maoists as they were considered agents of imperialistic, capitalistic Nepali hegemony. These schools had been the main venue where HIV prevention was being promoted throughout the country. Likewise, many INGOs working on HIV and AIDS issues in the rural areas were targeted for the same reason and had to close their projects under threats of the Maoists. Fearing forced conscription by the Maoists or by the police, many young men, including those who normally attended school, fled the rural areas, which made them more vulnerable to the normal temptations of migrants (a high risk group). And with these young men gone and the economy in shambles, poverty increased, leading many women to turn to prostitution out of sheer necessity. Lawlessness abounded in many rural areas as police abandoned their posts, while the army, unconcerned with enforcing civil laws, allowed traffickers and women abusers free reign during the conflict. And perhaps most significantly, young people were taken away from their families (their social structure) by the Maoists and put into coed bands of warriors that traveled together for months or years. These young people, who were ripped out of school, had little formal education, particularly on the behavior risks associated with HIV and AIDS—and they were in a ripe environment for risky sexual behavior, particularly without social reinforcement against any such behavior that they would have received from their families.
So, as demonstrated, many aspects of Nepal’s educational system have had negative repercussions upon the spread of HIV and AIDS in Nepal. And despite the progress of the past ten years, Nepal still has a long way to go.
1.7 Medical systems
Nepali illness beliefs and practices have been influenced by many different sources throughout history. Most of the modern inhabitants of Nepal trace their ancestry to various waves of migrants, who brought with them, from their origins, many beliefs and practices regarding illness. The influence of these illness beliefs and practices is still evident in the various medical systems in use today throughout Nepal. For instance, the original Bodic-speaking peoples, of pre–fourth century Mongolian origin, brought with them central-Asian shamanistic practices that are still evident in some of the healing practices observed among shamans today (Gaenszle 1994; Streefland 1985; Watters 1975). Likewise, the Khas tribes, who started settling in Nepal around 2000 B.C., brought with them ancient Ayurvedic traditions from India that are still widely practiced today (Dhungel 1994; Streefland 1985). Waves of Muslims brought with them Greco-Arabic medical beliefs and practices that are evident in modern-day homeopathic medical practices (Blustain 1976). Later, waves of migrants from Tibet brought with them Tantric Buddhist ideas about healing (which combine elements of ancient Chinese medicine and shamanistic practices of the early Bon and Lamism religions) that are still popular today (Durkin 1984; Streefland 1985). And recently, the allopathic ideas of Western medicine have been introduced and well accepted (Dhungel 1994; Pigg 1995a; Streefland 1985). Acharya (1994), Durkin (1984) and Streefland (1985) have provided particularly good descriptions of the interface between the various medical systems in use today in urban Nepal.
One characteristic feature of the Nepali medical system is its pluralistic or eclectic nature. Although each system might be associated (originally) with a certain group (or religion), modern Nepalis easily incorporate ideas and utilize treatments from the various medical systems. Stone (1976:77) suggests that “in several contexts of illness treatment, [Nepali] villagers easily combine Western medicine with traditional practices” and “such observations suggest that villagers have little difficulty integrating Western medicine with their own traditions on an ideological level.” Pigg (1995a) demonstrates that the way people determine which systems they will employ is dependent upon (1) their perceptions about which is most effective for particular illnesses and (2) their access to the various treatments. It seems that Nepalis have no problem integrating the ideas of the various systems into a new hybrid medical system.
Foster and Anderson (1978:53) dualistically divide non-Western medical systems into a “personalistic” and “naturalistic” dichotomy. In a personalistic system, illnesses are believed to be caused by the intervention of a sensate agent: supernatural beings (gods or deities), other nonhuman beings (ancestors, ghosts, or evil spirits) or human beings (sorcerers or witches). Sickness is often viewed as a punishment for some wrong committed. Naturalistic systems attribute disease causation to natural, impersonal phenomena, such as the disruption of the body’s equilibrium. Disruption of the body’s equilibrium can be caused by such things as an imbalance between the various humors of the body, the improper mixing of hot and cold foods, the imbalance of yin and yang, etc. When equilibrium is disrupted, illness occurs. Disease causation in naturalistic systems is impersonal, the result of more or less natural causes rather than a sensate agent.
Interestingly, both systems are practiced in Nepal. In many cases, demons or witches (personalistic) are believed to be the cause of illness. In other cases, sickness is interpreted as the result of the improper mixing of foods. Some individuals may consider certain classes of illness to be spiritually caused (personalistic) and others naturally caused, while another’s belief about illness causation (whether personalistic or naturalistic) may be informed by the traditional healer or astrologer and shift from illness episode to illness episode. In some cases, an individual can even attribute naturalistic and personalistic causes to the same illness episode. Again, this displays the pluralistic nature of the Nepali medical system.
Various authors have studied different groups of Nepalis and have described diverse beliefs and medical practices among Buddhist Nepalis (Adams 1988; Holmberg 1989), Hindu Nepalis (Blustain 1976; Stone 1976; Stone 1988), Muslim Nepalis (Blustain 1976), and mainly animistic groups (Allen 1976; Gaenszle 1994; Watters 1975).17 Although the medical practices of each group may focus mainly on the specifics of a particular system, influence of the various other systems is evident as well. Again, various authors have demonstrated that medical pluralism is well utilized throughout the various groups in Nepal (Acharya 1994; Blustain 1976; Dhungel 1994; Durkin 1984; Pigg 1995a; Streefland 1985; Stone 1976). Although there are differences between the various groups, some common features emerge.18 For instance, for all of the groups listed, disease etiology can be either single factorial or multiple factorial, and disease can be either physically caused or spiritually caused. Many of the other features common to the various groups of Nepalis will be discussed further in chapter five.
Recently, authors have focused on the impact of “modernization” and paradigms of Western development upon the Nepali medical systems (Adams 1998; Justice 1986; Pigg 1992, 1995a, 1995b, 1996; Stone 1976). Focusing on the impact of the application of Western paradigms for primary health care programs in Nepal, Stone (1992) describes how Nepal has begun to favor a “community participation” approach to primary health care. The result has been a shift from curative services to an emphasis on health education. Although many aspects of this shift have been positive for Nepal, Stone illustrates that it is actually the underlying development discourses rather than issues of efficacy that have informed the community health program in Nepal. She cites critics that contend that the new approach (community participation) is simply another hegemonic Western device, which “promotes current political and economic structures of inequality” and she concludes that “the current focus on community participation appears to be an attempt to promote the Western cultural values of equality and self-reliance (values not shared by the local population), while ignoring alternative values and perceptions of how development might work in rural, non-Western societies of developing countries (Stone 1992:412).” Stone (1986, 1992) also demonstrates how, ironically, this new mode of thinking (with its emphasis on community participation) actually stifles the voices of the local people rather than taking them into account.
Likewise, Pigg (1995b:47) demonstrates how many principles inherent in Western development paradigms and discourses being deployed in Nepal “systematically dismantle and decontextualize different sociocultural realities in the course of taking them into account.” Similarly, Justice (1986) demonstrates how Nepali health planners, even if they have social and cultural information available, do not use it in health planning. She suggests that this is largely due to deference on the part of national health planners toward the favored paradigms of international aid bureaucracies.
Pigg (1996:161), further illustrating the impact that Western development discourses (which dominate health development approaches in Nepal) have had, demonstrates how traditional healers (shamans) have been “caught up in the meanings of modernity.” Bikaas ‘development’ is perceived as good and anything traditional (such as shamanism) is seen as backward. Likewise, Adams (1998) demonstrates how Nepali doctors, favoring a paradigm of Western modernity, were instrumental in the recent democracy movement. According to Adams, Nepali doctors, who see themselves as modern individuals (which implies an understanding of modern medical science as objective “truth”), have served as harbingers of Western epistemological hegemony in the politicization of medicine in Nepal. She contends that the democracy movement was a product of individualism, which itself was largely the result of Western paradigms implemented by health planners in Nepal.19
All of these authors illustrate the impact that Western discourses of development have had upon the Nepali medical systems. This issue will be revisited in the following pages as we consider the impact of the concept of bikaas upon the HIV and AIDS epidemic in Nepal.
Topography and economy (which are related) combine to make health care services generally poor in rural Nepal. Add to this the pluralistic nature of the Nepali medical systems and one is left with a system that has affected, and will continue to affect, the spread of HIV and AIDS in Nepal. This will be discussed further in the coming chapters.
1.8 Religion
As can be seen, there is a strong tie between medical practices and religion in Nepal. The current census of Nepal (NPHC 2012) lists 81 percent of Nepal’s population as Hindu, followed by 9 percent claiming Buddhism, 4 percent Islam, 3 percent Kirat, 1 percent Christian, and less than 1 percent each following Prakriti, Bon, Jainism, Bahai and Sikhism.20 These figures are often debated and it is suggested that the numbers of non-Hindus is actually much higher (Pfaff-Czarnecka 1997). Many of the mountain populations counted as Hindu actually practice a “Hinduized” animism or shamanism, which is heavily influenced by the ancient Bon religion of early Tibet.
A key feature of the dominant Hindu philosophy is the caste system. Modeled on the orthodox Brahmatic caste system of India, this system creates social classes and social stratification throughout all of Nepali society. According to Stone (1997:86), Nepali castes are “ranked status groups, with the ranking sanctioned by religion. The whole system is expressed through Hindu religious ideas concerning purity and pollution: Higher castes are considered more pure than lower castes.”
Stone presents a model of Nepali caste that posits sacred thread-wearing priests (Brahmans) at the top, followed by the sacred thread-wearing non-priests, the liquor drinking castes and the untouchable castes (fig. 1.2). Each of the castes has strict dietary and behavioral rules and interaction between castes is sanctioned by these rules (Stone 1997:86). And the most important rule is dietary: higher caste members cannot eat rice (or any food) cooked by persons of a lower caste (although the reverse is allowable). Many of the Tibetan, Tibeto-Burman and Muslim people groups of Nepal (all non-Hindu groups) also practice their own caste hierarchies.
| Pure | Sacred thread–wearing | Priests | Brahmans |
| ↑|||↓ | Non-priests | Chetris, etc. | |
| Liquor drinking | Matwalis | ||
| Impure | Untouchables | Various castes |
Figure 1.2 The Nepali caste system (adapted from Stone 1997).
The concepts of purity and pollution (which are at the core of the caste structure) will prove an integral part of cultural schemata (which underlie cultural models), as we will see in later chapters. As mentioned earlier, one’s caste standing has traditionally determined access to education and employment, which has implications for the spread of HIV and AIDS. AIDS is viewed by some as a problem only for the impure low caste. In chapter three we will be introduced to other aspects of religion that may also prove detrimental to the spread of HIV and AIDS in Nepal.
1.9 Conclusion
Many aspects of Nepal’s history, economy, geography, education and religion are linked to HIV and AIDS in Nepal and have played a part in fostering the spread of the disease. The impact of these various societal features will become evident when we consider the HIV and AIDS situation in Nepal further in chapter three. We will also see in later chapters that many of these same societal features have been influential in shaping cultural models of HIV and AIDS and their underlying illness schemata. Before we address HIV and AIDS specifically in Nepal, it will be helpful first to examine the topic of HIV and AIDS generally. This will be the focus of the next chapter.
2 : AIDS
Nobel laureate David Baltimore, in a statement made at the American Academy of Arts and Sciences, said, “AIDS is a medical problem: The only issue is when we will solve it.”21 This represents one extreme view of AIDS, namely that it is purely a medical problem. At the opposite extreme there are those who suggest that the concept of AIDS is purely invented (Duesberg 1996). Others, taking a middle ground, recognize the biomedical reality of HIV (the virus that causes AIDS) but also recognize the social aspects involved in the construction of cultural meaning that is associated with the worldwide pandemic known as AIDS.
The one extreme position claims that AIDS is not real: it is a total “cultural construction,” the product of Western modernity wrapped in the narratives and discourses of the science of the modern era, only a “fact” as viewed through the narrow epistemology of Western medicine. I do not go this far. Although this type of Foucaultian postmodern analysis has its value in challenging the over-reified view of all science as “truth” (i.e., objectively removed from all social influence), for the people of Nepal, AIDS is a reality—a terrifying reality. I take the middle ground: AIDS is a combination of biological reality (the HIV virus) and social construction (the meanings associated with AIDS). Or, as Treichler (1992) has aptly put it, the problem is medical, the drama is human.
Human beings view disease in the context of biological and social conditions (Fee and Fox 1992:9). AIDS is a particularly good example of the social construction of disease. In the process of defining both the disease and the persons infected, politics and social perceptions have been embedded in scientific and policy constructions of their reality and meaning.
The purpose of this chapter is to briefly introduce the reader to the biomedical “facts” about AIDS, including its causes, history and treatments, as well as to discuss AIDS as a social construction. Much has changed in the realm of HIV and AIDS since the first edition of this book appeared in 2003. Beyond the change of vocabulary (from HIV/AIDS to HIV and AIDS), new treatments are now available and there is even talk of a potential “cure” on the horizon. At the time of the first edition of this book, due to the emergence of antiretroviral therapy (ART) treatments and the subsequent first-time declines in associated death rates in the late 1990s—at least in the West—many (including myself) were just beginning to challenge the popular “dire predictions” narrative of the preceding decade.22 Because of the unequal access to these drugs, however, and with no foreseeable cure in sight, many (again including myself) expected the AIDS epidemic to continue relatively unabated outside the west, and certainly in Nepal, into the foreseeable future. What we couldn’t see at that time was the possibility of treatment as prevention and the emergence of possible “functional cures” that lay just around the corner. Given the recent developments of ART treatment as prevention and perhaps “functional cures,” many scholars believe we may be at a significant “turning point” in the HIV and AIDS epidemic. These recent developments will be discussed further in this chapter.
2.1 AIDS as biomedical fact
AIDS is the acronym used for the medically defined acquired immuno-deficiency syndrome. In lay terms, the acronym can be explained in this way:
Acquired: the virus is non-hereditarily transmitted23
Immunodeficiency: the virus weakens the immune system, resulting in greater susceptibility to various opportunistic infections24
Syndrome: a collection of common symptoms or signs (usually opportunistic infections) appears, which are fairly typical in infected persons.
AIDS is caused by a group of related viruses referred to as HIV (human immunodeficiency viruses).25 HIV, like most other viruses, requires reproduction within the cells of the body. Once inside the body, the virus attaches itself to the surface of T-cells (T-lymphocytes), commonly referred to as white blood cells. The virus then enters the host cell by attaching itself to a protein known as a CD4 receptor in the plasma membrane of the cell. When HIV comes in contact with the CD4 receptor, the cell opens up, letting the virus enter the host cell.
A defining characteristic of retroviruses (which include HIV) is that they are able to transcribe RNA into DNA (through the use of a special enzyme called reverse transcriptase), allowing the virus to integrate into the host DNA of the cell nucleus.26 Thus, HIV becomes resident in the cell nucleus by inserting itself into the infected person’s own DNA and grows in the body as cells divide and multiply. Cell reproduction takes place in the normal way (divide and multiply), but the newly emerging T-cells, which usually are involved in fighting infection, are compromised. T-cells are involved in attacking infected cells in our bodies. The HIV-infected T-cells, however, lack this ability, reducing the effectiveness of the body’s immune system. As the number of these HIV-infected T-cells increases in the body, the immune system becomes more and more depressed, allowing foreign bodies to enter the body and survive. In this weakened state, the body finally succumbs to the “invaders” and the result is death.
According to AmfAR (2012), over 60 million people have contracted HIV since the beginning of the epidemic, and nearly 30 million of these have since died. It is estimated that there are currently 34 million people living with HIV or AIDS around the world (USAID 2012). In 2011, 2.5 million people became newly infected with HIV (UNAIDS 2012) and 1.7 million died from AIDS (AmfAR 2012). Each day nearly 7,000 persons contract HIV worldwide (AmfAR 2012) at a time when it is known how to prevent the infection by the virus that causes AIDS. By 1997 AIDS had been reported in over two hundred countries (Frumkin and Leonard 1997:117) and today it would appear that there is not a single nation remaining untouched by the epidemic.27
While these numbers are certainly daunting, recent advances in prevention and treatment are decreasing the infection rate around the globe. According to the latest figures from UNAID (2012), twenty-five countries have seen a 50 percent (or greater) drop in new infections since 2001. The Caribbean region (which ranks second behind sub-Saharan Africa as the most affected region of the world) has seen a 42 percent reduction in infections, and over the past two years, half of all reductions in new HIV infections have been among newborn children, demonstrating that elimination of new infections in children is possible. It would appear that, likely owing to the new ART as a prevention strategy now being employed around the world, globally the epidemic has actually leveled off and is now beginning a decline. According to UNAIDS (2010), the number of new HIV infections peaked globally in 1996 and the number of AIDS-related deaths peaked in 2004.
The latest data from UNAIDS (2012) also suggests, however, that new HIV infections have increased in East and North Africa by 35 percent or more for the same period (since 2001) and that Central Asia and Eastern Europe have also seen increases in HIV infection rates in recent years. This same data elaborates on the worrisome connection between HIV and tuberculosis (TB), concluding that TB remains the leading cause of death among People Living with HIV and AIDS (PLWHA). Furthermore, it concludes that although ART can reduce the risk of contracting TB by PLWHAs by up to 65 percent, fewer than half of those infected with both HIV and TB were receiving ART treatment as of 2011. And as is the case in Nepal (and likely elsewhere as well) there is certainly still a disparity between the availability of and access to ART treatments. So it would appear that the gap between rich and poor nations in regard to AIDS (noted in Beine 2003:56) remains true today, despite the progress noted above.
2.1.1 The history of AIDS
Although the term AIDS was not coined until 1981, and HIV, the virus which causes AIDS, was not “discovered” until 1983 (Frumkin and Leonard 1997:1), recent evidence suggests that HIV was already present in the West as early as the 1950s (Frunkin and Leonard 1997:7), and new evidence suggests that HIV may have had its origin among humans in Africa possibly as early as the period between the 1880s and 1920s (Worobey 2008). There is much controversy and continued debate about the origin of HIV and its subsequent transfer from simians to humans.
By the early 1980s the infection had become widespread enough to gain popular attention. Physicians were seeing multiple patients with strange symptoms. It wasn’t so much that the symptoms were unusual, but the diseases identified were being diagnosed in populations not normally associated with these diseases. By 1981, the Center for Disease Control (CDC) had over one hundred reports of young, healthy, gay men who had contracted diseases such as Kaposi’s sarcoma, a type of cancer that usually affects elderly men of Mediterranean descent, and Pneumocystis carinii pneumonia (PCP), an unusual lung infection in young, otherwise healthy men. When this phenomenon grew large enough, it caught the attention of the CDC, a government-funded agency whose job it is to study such anomalies. On the basis of their findings, scientists at the CDC hypothesized an immunodeficiency syndrome but still hadn’t discovered the causative virus, HIV.28 The link between HIV and AIDS would not be made definitively for another two years.29
Because the first cases noted were mostly in gay men, the disease was first termed gay-related immunodeficiency (GRID) (Flynn and Lound 1995:11). Fed by media reports of the new “gay disease,” the first cultural model of AIDS—as it would later be called—began to emerge, namely that AIDS was a “gay” disease and a “death sentence.”
During the next few years many immigrant Haitians were also found to be infected with GRID, as were hemophiliacs and even newborn infants (AmfAR 1999:370–374). Because the scope of the disease had now moved well beyond the initial community, GRID was renamed AIDS. The new findings began to modify the new cultural model of AIDS that was emerging among the general public. AIDS was still very much considered a “death sentence” but no longer understood as just a “gay” disease.
It has long been suspected that HIV had its origin as a zoonotic disease. Because HIV is so similar to simian immunodeficiency virus (SIV), a virus that causes AIDS-like symptoms in some kinds of monkeys, the link between HIV and SIV was hypothesized (Frumkin and Leonard 1997:13). New research (Gao, Bailes and Robertson 1999) has confirmed this hypothesis, suggesting the common chimpanzee (Pan troglodytes troglodytes) as the origin of HIV-1. Tests carried out on strains of SIV suggest that HIV-1 arose first in this species (as a related SIV). The natural range of this species also corresponds with the areas where HIV-1 is endemic, suggesting that the chimpanzee is the main reservoir for HIV-1. The research also postulates that chimpanzees have been the source of introducing SIV into human populations on at least three separate occasions.
2.1.2 Treatments, treatment as prevention, and “functonal” cure
It would seem we are at a pivotal turning point in the fight against HIV and AIDS. Although there is no true cure for AIDS at this time and no vaccine yet to prevent it, the development of several ART regimens has changed the course of the epidemic (Dieffenbach and Fauci 2011), lowering the death rate of PLWHAs around the world.30 Further, it seems that using these same regimens prophylactically with the non-infected partners of HIV-positive persons (i.e., preventively) can actually decrease the new infection rate (by blocking transfer) dramatically. And it looms hopeful that certain uses of ART might actually provide a functional cure for many in the future.
2.1.2.1 Early ART therapies
Antiretroviral therapies first began to be developed for use against HIV between 1985 and 1990 (Broder 2010). The discoveries led to multi-drug therapies (often referred to as cocktail therapies since they involve the use of various drug combinations), which began to significantly lower the death rate from AIDS in the places where they were being used. With the advent of highly active antiretroviral therapy (HAART), mortality among patients with AIDS who were under ART treatment was nearly half what it was prior to the “HAART era” (Rathbun 2012), and life expectancies for those with HIV rose from months to decades (Dieffenbach and Fauci 2011). Many of these new treatments were successful at reducing the amount of HIV in the blood to an undetectable level. However, these drugs were found to control the virus but not to eradicate it. Once a person stopped treatment, HIV again began to grow in the body. The new treatments began to shift the cultural model to understanding AIDS as a chronic, manageable condition. “Living with AIDS” rather than “dying from AIDS” became the new model.
In the early years of antiretroviral drugs (ARVs) these new medical advances had little impact on the spread of HIV worldwide.31 At that time, 95 percent of HIV infections occurred in the developing world and the developing world also experienced ninety-five percent of all deaths due to AIDS (UNAIDS 1999). There was a large gap between East and West (what I termed “the West and the rest” in the earlier edition) in their ability to access these new treatment possibilities. Many of these treatments at that time cost over one thousand dollars a month per person—an unrealistic hope for an AIDS sufferer, for instance, in Nepal, a country of socialized medicine, where the government then allocated the rupee-equivalent of seven dollars (US) per person per annum to health care and where the underlying trend was an annual decrease in health expenditure (Smith 1996:140). The cost of these treatments made them impossible for developing nations to ever consider. So, while the cultural model began to shift to “living with AIDS” in the West (for those who had access to ART), it remained “dying with AIDS” in the rest of the world (for those who did not have access to ART). In the next section, I will discuss the socioeconomic implications that these changing cultural models have had and will continue to have in the future.
In recent years an effort has been made to make these life-saving drugs more widely available to all. Today ART is considered “standard fare” in HIV treatment and is often made available for free (via a grant from the Global Fund to Fight AIDS, Tuberculosis and Malaria). Even so, by 2008 only 13 percent of those who needed it had access to ART in Nepal (USAID 2008). So, even though ART is now “available” free of charge in Nepal, there are still structural problems preventing access for all. And in 2011 the Global Fund announced an acute funding crisis, which may limit the fund’s ability to continue providing these ART drugs free of charge in the near future (Boseley 2011).
2.1.2.2 ART as prevention
In 2011, a study conclusively confirmed what had long been suspected: that treating HIV-positive persons with ART would significantly reduce their chances of transmitting HIV to their sexual or drug-using partners. This landmark study (Cohen et al. 2011) concluded that ART treatment of an HIV-infected partner reduced the risk of transmission to the uninfected partner by 96 percent. Thus, the study definitively proved that early HIV treatment with ART has a “profound prevention benefit” (CDC 2013). The practice of treating HIV-infected persons as a method of reducing transmission came to be considered “treatment as prevention” (CDC 2013). Science Magazine hailed the discovery as the “breakthrough of the year” (Cohen 2011:1628).32
The discovery instantly worried some that it might be hailed as a kind of “magic bullet” and that future prevention efforts might therefore favor an overdependence on treatment-based prevention efforts (to the exclusion of all other prevention efforts). Soon after the announcement, well-known HIV and AIDS researchers Edward Green, Allison Herling Ruark, and Norman Hearst commented:
This week, the United Nations General Assembly meets to discuss progress against the HIV and AIDS epidemic amid news that antiretroviral drugs can drastically reduce HIV transmission from infected to non-infected partners. The U.N.’s AIDS agency, UNAIDS, has already called this news a “game changer” and at this week’s meeting will doubtless call for massive infusions of donor funding in order to implement this treatment-as-prevention approach.
Nearly as certain is that little will be said about investing in programs to encourage the kind of fundamental behavior change, particularly faithfulness between sexual partners, that has already saved millions of lives worldwide. Serious investment in such programs would cost a tiny fraction of the vast sums required for HIV treatment. Yet there is a serious lack of political will to invest in simple, low-cost programs which address the real drivers of the HIV epidemic, such as multiple sexual partners. (Green et al. 2011)
It seems that these words were almost prophetic as the discovery was “translated rapidly into policy for the global response” (Cohen et al. 2012:1439). The announcement created a firestorm of debate among HIV researchers, which is still raging as of this writing. At the heart of the debate seems to be a concern over resources. Some fear that already-limited resources (currently thinly spread over a variety of non-treatment prevention approaches) will be further appropriated from these approaches (such as behavioral change), to be spent more heavily on this new “treatment as prevention” drug-based method. And the concern seems warranted. In 2003, U.S. President George W. Bush initiated the President’s Emergency Plan for AIDS Relief (known as PEPFAR), a program that committed 15 billion dollars over five years (2004–2008) to be used globally to fight HIV and AIDS. The plan allocated 80 percent for treatment and care (e.g., ART delivery) and 20 percent for prevention (e.g., sexual behavioral change efforts). In 2008, PEPFAR was renewed by Congress, shifting emphasis toward “expanding existing commitments around service delivery” (i.e., treatment) and removing the 20 percent funding allocated for prevention altogether (Moss 2008). The debate, pitting behavior-change prevention efforts against other methods (e.g., treatment as prevention, condom distribution, etc.), is not new and it seems to be indicative of a possible ideological divide among HIV and AIDS researchers.33 And it is difficult to assess what the final repercussions of this funding shift will produce.
2.1.2.3 Limitations of ART
One of the first limitations to ART as prevention is that subsequent studies have shown far more modest results. A study published in The Lancet in 2012 (Jia et al. 2012) found that ART used to prevent HIV transmission in serodiscordant couples in China produced a far more modest reduction of 26 percent.34 While certainly significant, the results are far from the 96 percent findings of the earlier study, suggesting that while ART as prevention is a positive step forward, it alone may not be the silver bullet researchers had hoped it would be.
Many field-based anthropologists working in developing countries seem to have a less-than-optimistic view about the ability of ART (i.e., treatment as prevention) to completely solve the AIDS problem. Fauci, in an earlier article (Fauci 2011), had conveyed great optimism that ART would be the final answer to the pandemic. In a follow-up to the article, Jonathan Imbody, the Christian Medical Association Vice President for Government Relations, asked Fauci directly about the remaining barriers to ART delivery and compliance (Christian Medical and Dental Association 2011). When questioned about the challenge of getting AIDS patients to adhere to their medicines, Fauci “acknowledged the need noting, ‘we have to do behavioral intervention along with the biological.’” Imbody then went on to list various reservations that a number of individuals and organizations working with AIDS patients in developing countries had expressed to him. These included issues related to (1) motivation. “Those who haven’t yet experienced the symptoms may be less motivated and disciplined in treating the disease”; (2) stigma, which inhibits some from seeking treatment; (3) money. Because of cutbacks, some who began receiving treatment free under PEPFAR have now lost, or will soon lose free access as noted previously; (4) adherence. Non-adherence can create future drug resistance, which could be disastrous; and (5) mistrust. Testing and treatment depend upon the acceptance of science and scientists, and many individuals in developing countries do not trust either.
Many of these same concerns are relevant to the Nepali context as well. And there are certainly many other structural issues still inhibiting ART delivery in Nepal (even though it is, for now, still free). These will be elaborated on in the next chapter. So while the amazing development of ART as treatment and prevention is obviously very substantial in the global fight against HIV and AIDS, it may not be the panacea that some have made it out to be. Given the new emerging data, coupled with the limitations noted above, it would seem prudent (and responsible) for HIV researchers and the media to curb their excitement and communicate publically that, in light of the new studies and the remaining identified barriers, our approach to HIV prevention needs to remain “both/and” (i.e., treatment as prevention and behavioral change), not “either/or.”
Fortunately, there seems to be an emerging understanding concerning the limitations of any future total dependence upon treatment as prevention.35 The CDC (2013) concludes, “treatment by itself is not going to solve the global HIV epidemic” but that “controlling and ultimately ending the epidemic will require a combination of scientifically proven HIV prevention tools.” And in a recent review of its current PEPFAR plan, the Institute of Medicine (IOM) concluded the following:
To contribute to the sustainable management of the HIV epidemic in partner countries, PEPFAR should support a stronger emphasis on prevention. The prevention response should prioritize the reduction of sexual transmission, which is the primary driver of most HIV infections, while maintaining support for interventions targeted at other modes of transmission. (IOM 2013:723)
It would seem that another pendulum shift may be close at hand. It is critical to once again reassert the importance of prevention in the overall equation in order to eliminate HIV and AIDS. Such a shift would be an important and necessary correction on the part of policy planners.
2.1.2.4 A “functional” cure?
The first hope of a cure for HIV came in an anomalous case when an HIV-infected man living in Berlin was being treated for acute leukemia, which he had developed subsequent to his HIV infection. He was given a bone marrow transplant from a donor whose cells were genetically resistant to HIV. Following the procedure, he stopped his HIV drugs and ART treatments and his HIV remained undetectable in his body (NPR 2012) (Salter 2012).
In a second case, an HIV-positive baby born in Mississippi was treated aggressively with ARVs just after birth. Even after the cessation of ARVs there was no remaining trace of HIV in the baby’s body (Pollack and McNeil 2013a). This is thus the second documented “cure.”
In a third recent case, French doctors reported fourteen HIV-positive patients whose bodies seemed to be controlling their HIV without further medication (Pollack and McNeil 2013b). Like the Mississippi baby, they had been aggressively treated with ARV medications soon after their infection. Unlike the baby, they still had traces of HIV but their own immune systems seemed to be keeping the virus at a near-undetectable level. The researchers consider these patients “post-treatment HIV controllers” in “long-term remission,” and “functionally cured.”
The indications of the French patients may be that early aggressive ART may be effective at preventing the HIV virus from creating a reservoir of HIV-infected cells, thus giving the patient’s own body the chance to control the virus naturally. This form of cure is sometimes termed a “functional cure” because the body’s own defenses seem to control the virus even after the suspension of medication. A month later, AmfAR published an article in which a further distinction was made (Johnston 2013). A “sterilization cure” is considered such because it eliminates all traces of the virus from the body rather than merely controlling the virus. According to Johnson (2013), the man known as the “Berlin patient” and the baby “may be as close to a sterilizing cure as we will ever come.” Johnston states, however, that there is still much that is not well understood about these cases, and it must be noted further that they are confined to the West.36 It seems likely that due to the various limitations noted above, cures for “the rest” are probably a long way off.
The discovery and success of new AIDS treatments, treatments as prevention, and possible functional cures, also have implications in that they have changed and will further change the face of AIDS. A key element in the social meaning attributed to AIDS (a product of a shared cultural model) in the early years was the infectious and fatal nature of the disease (i.e., AIDS as a death sentence). With the advent of new treatments and the widespread use of these combination-drug therapies, however, the cultural model of AIDS then shifted to being understood as a manageable chronic disease, much like diabetes (the idea of “living with AIDS”). And with a potential cure in sight (i.e., a functional or sterilization cure), the cultural model of HIV and AIDS is likely to shift again—at least in the geopolitical areas where functional cures are available. This will be discussed further in the next section.
2.2 AIDS as social construction
As discussed above, AIDS is a biomedical reality, but it is also a reality as a social construction. As Fee and Fox (1992:9) claim, “AIDS is a particularly good example of the social construction of disease.” Further building on this hypothesis, they contend that AIDS, the syndrome associated with the HIV virus, is more of a social construction than a biomedical reality (Fox and Fee 1992:10). Various other authors, making this same claim to varying degrees, also allude to this social side of AIDS. Schoepf, for instance, commenting on her research in Zaire, states that “AIDS may be usefully viewed as socially produced” (1992:260). Farmer (1992:xi) contends that “the world pandemic of AIDS and social responses to it have been patterned by social arrangements.” Herdt (Herdt and Lindenbaum 1992:3) claims that “culture shapes our response to the disease.” And Susan Sontag (1988) demonstrates that people used familiar metaphors to make meaning of AIDS when it first emerged.
Medical anthropology has recognized that cultural models of health and illness are strongly influenced and shaped by cultural factors. AIDS is no exception. It has been said of the Western medical model that a patient comes to the doctor’s office with an illness but departs with a disease (Treichler 1992:75). Thus, illness is “the culturally defined feelings and perceptions of physical and mental ailments and disability in the minds of people in specific communities,” while disease is recognized as the “formally taught definition of physical and mental pathology from the point of view of the medical profession” (Pelto and Pelto 1996:302). It seems that both the illness of AIDS and the disease of AIDS (as defined above), at least in part, are culturally informed.
As alluded to previously, however, one must make a distinction between illness and disease as pure cultural construction (i.e., no “truth” behind the biomedical model) and illness and disease as a product of the interaction between natural law and culture. John Gagnon (1992:33) makes a useful distinction between “epistemological doubters” and “methodological doubters” when it comes to the evaluation of science, whether hard or soft. The former (the epistemological doubters) argue that researchers do not discover facts; rather they participate in their production and reproduction. He characterizes this as the position of Foucault and others who express an extreme postmodern position of social constructionism. For those in this camp, scientific “facts” are purely the product of social construction. The latter (the methodological doubters) recognize the limitations of theory, the imperfection of techniques and the often error-laden nature of data, but also recognize that there is, indeed, an underlying natural order in the universe that scientific tools can help at least approximate.
Methodological doubters, of which I am one, recognize the role of culture in shaping our perceptions but hold that through refinement of theories, improvement of techniques, limitation of bias and reduction of data error, we, in our human effort called “science,” may at least approximate some of the true parameters of nature. For epistemological doubters no such thing as objective truth even exists. For methodological doubters, the discovery of approximate objective truth, while embedded in human culture, is at least attemptable.
There is also a danger, however, in minimizing the role of culture in the production of scientific fact. Farmer (1992), for instance, demonstrates that the construction of the biomedical model of AIDS in America in the early years of the epidemic was strongly influenced as much by the North American folk model of Haitians (which posited certain Haitian voodoo practices as the cause of AIDS) as it was by biomedical science.37 One must strive for reason in the balance between these two positions.
Whether or not one stands in the first camp (of epistemological doubters), or, as I do, the second (of methodological doubters), both groups acknowledge that culture shapes our perceptions of illness and disease. This is true of AIDS as well.
2.2.1 Various cultural models of AIDS
There are various socially constructed cultural models of AIDS around the world.38 Paul Farmer (1994), for instance, traces the development of a cultural model of AIDS in Haiti. Farmer’s research illustrates a widely shared representation of the new disorder that has developed over time. To the Haitian, AIDS (known as SIDA in Haiti) is conceptually understood as (1) a new disease; (2) strongly associated with skin infections, “drying up,” tuberculosis, and diarrhea; (3) can be caused “naturally” (via sex) or “unnaturally” (“sent” to another through a kind of witchcraft); (4) caused by a microbe; (5) transmitted by contact with “dirty blood;” and (6) is viewed as a product of a larger problem of North American imperialism, lack of class solidarity among the poor, and corruption among the ruling elite (Farmer 1994:805–806).
Although not explicitly identified as a cultural model of AIDS, various widely shared conceptions about AIDS have existed in America since the inception of the disease. Using several recent histories about AIDS, a cultural model can be posited which developed during the early years of the epidemic here in America. As mentioned previously, the first component of this cultural model was that AIDS was a “gay disease” (American Foundation for AIDS Research 1999:376; Flynn and Lound 1995:11; Giblin 1995:197). This concept soon widened to include other marginalized “bad people” such as intravenous drug users (Flynn and Lound 1995:14; Herdt 1999:3). This, coupled with the second element of the early model that AIDS is infectious, resulted in stigmatization toward the disease and anyone associated with it. The final, and perhaps most powerful element of the newly emerging cultural model, was that AIDS was fatal (Flynn and Lound 1995:55). This recognition often led to irrational fear. People feared touching HIV positive persons (Flynn and Lound 1995:55) or even sitting near them (Giblin 1995:135). We feared using utensils that AIDS infected persons might have used (Flynn and Lound 1995:56; Giblin 1995:135). We even feared getting AIDS by sitting on public toilet seats (American Foundation for AIDS Research 1999:376; Giblin 1995:134). These were all elements of the early cultural model, or what meaning people associated with AIDS during the early years of the epidemic in America.
While the average American (following the early cultural model) took refuge in AIDS only being a gay disease, the early cultural model developing in Britain focused on AIDS as a life-threatening heterosexual disease of epidemic proportion which was a “danger to the general population rather than a specific ‘risk’ group” (Berridge 1992:52). This is not to say that there were not some in Britain who associated AIDS with the gay community, but those who were involved in early education, and therefore the formulation of a wider cultural model, focused their efforts on the “need for public education to stress the heterosexual nature of the disease rather than the ‘gay plague’ angle of the popular press” (Berridge 1992:59). This had its impact upon the resultant cultural model of AIDS in Britain. Like in America, fear was a major early reaction to the newly emerging life-threatening disease, but the use of public policy to construct a cultural model that considered such fear as unwarranted “moral panic,” had a positive impact upon popular views in Britain. So, although the early British cultural model shared some features with the American model (fatal and infectious), it also differed in significant ways that lead to the formulation of a different cultural model of AIDS in the two countries.
If one were to analyze in the same way the countries of Africa, where the infection attacks men and women equally, other cultural models of AIDS would emerge. Cultural models are a unique combination of factors. There may be shared elements in the cultural models of AIDS in many cultures, but the unique situations specific to each culture may also affect the construction of various unique cultural models of AIDS, as has been demonstrated. Nepal has yet different cultural models of AIDS; cultural models based on her unique culture, history (including political structure), economy, geography, and religion. Having made the point that different cultures construct different cultural models of AIDS, however, we will see in the next section that one characteristic of a cultural model is its ability to change over time.
2.2.2 The changing face of AIDS
One major feature of cultural models is that they are dynamic. Farmer (1994) and Berridge (1992) have both traced the change of the dominant cultural model of AIDS through the years in Haiti and Britain, respectively. The “face of AIDS” in America has also changed through time. In the early years, AIDS was perceived to be a fatal, infectious disease. Then with the advent of the newly available ARTs in the mid to late 1990s, the image of AIDS in the USA, as in the rest of the developed world, began to be modified from understanding AIDS as an “acute” problem to more of a “chronic” condition (Herdt 1992:11). Even though the numbers of new HIV infections was on the rise in the USA at that time, the death rate for AIDS related deaths dropped in 1996 for the first time since the advent of the epidemic (The Register-Guard 1997:1). The American media then boasted that “AIDS has been contained.”39 Furthermore, it proclaimed that the once certain “death sentence” had then become a “chronic manageable condition” (Treichler 1992:88).
A National Public Radio story (NPR 1999) at the end of the century even featured HIV positive couples having children, an idea that was once taboo for HIV-infected persons. This trend illustrated the shifting cultural model of AIDS in America. With improved prospects for longevity provided by the new drugs—life expectancies had increased from months to decades— many couples with HIV wanted to start families. New technologies, such as a new method of in vitro fertilization that included “sperm washing,” were also reducing the risk of passing the virus to unborn children. The available new drug therapies began changing the cultural model of AIDS for those who were HIV positive. On the radio program, one HIV positive interviewee commenting on his improved health said, “For ten years we had been waiting for an illness that would be the final one. Now we say, dammit, let’s start living.” Another HIV-positive interviewee added:
If you asked me five years ago whether people with HIV should have children I would have said no. Medicine is so improved now that I’ve gone from close to death—very sick—to undetectable levels of the virus in my system. I am able to work and function normally. And that’s something I couldn’t do five years ago.
This man’s wife, also HIV positive, speaking about HIV in the past said, “It was definitely a death sentence then. You were given your diagnosis and out into the world you went. And you waited like a time bomb for the bomb to explode.” This couple’s nine-year-old daughter, also HIV positive from birth, commented that her friends at school considered her “lucky” to have HIV. She said that her friends didn’t make a big deal of her HIV status and that they even considered her lucky because she got to go to special camps and do other neat things that her friends didn’t get to do. In response to her comment, the commentator asked in surprise, “Do you feel lucky to have HIV?” The girl responded in the affirmative, echoing the response of her friends regarding the “neat opportunities” and also added that her trips to the doctor had been fun. She was also on the new medications and hadn’t yet been sick. It is clear that the cultural model of HIV and AIDS had begun to change dramatically for these people. The motif of the AIDS sufferer went from “dying from AIDS,” to “living with AIDS.”
Around this same time there was another interesting and dangerous phenomenon that began to take place in the American and other nations’ cultural models of AIDS. What some researchers refer to as “AIDS fatigue” had set in. Singer (1999) reported the words of one of Thailand’s leading AIDS workers: “We’ve become used to AIDS because someone is dying here every day…today no one is afraid.” It seems that the message had become so prominent that many were just getting tired of hearing about AIDS and being afraid of it. Couple that with the cultural model change of AIDS as a deadly, infectious disease, to a chronic manageable condition, and you have a problem. Time magazine then reported that although death rates were lower, “the numbers of new HIV infections is holding steady at over forty thousand per year, and researchers reported a surge in unsafe sex practices” (Time 1998). This was a stark contrast to a report published in Time magazine in 1994 which cited fear of contracting AIDS as the biggest concern of youths between the ages of nine and seventeen (Giblin 1995:184). It seemed that fear of contracting AIDS was just not as strong of an issue anymore. This AIDS fatigue trend began in the late 1990s and continues to the present. It is so prevalent today that Wikipedia (2012) dedicates a page to discuss the topic, AIDS activists blame it for decreasing contemporary media coverage of related issues (Bjerk 2012), and Peter Piot (the former head of UNAIDS) accuses it of affecting ongoing AIDS funding (Bloomberg 2010).
At the thirtieth anniversary of HIV and AIDS we can clearly define two specific cultural models evenly dividing the thirty-year span. According to Dr. Michael Saag:
If we divide the 30 years in half—literally, 15 years—the first half was death, dying, huge stigma, isolation and, to some degree, hopelessness. Through this remarkable investment—in particular, by the NIH and our government and pharmaceutical companies working together—within a very short period of time, the virus was discovered, drugs were identified that actually worked dramatically well, such that by 1996, we had what we now call HAART or triple drug therapy that totally transformed the face of AIDS. Such that over the last 15 years, HIV has been converted from a death sentence to a chronic manageable condition that someone diagnosed today can live a normal lifespan if they take the medicines regularly and they get the virus in check. That’s remarkable. (NPR 2011)
So the evolution of this cultural model is clear—from AIDS as a death sentence, characterized by death and dying (1981–1986)—to the time of ART, where AIDS is viewed as a chronic manageable disease (1997–2012), and is perhaps best characterized as a time of hope.40 One must wonder, with the possibility of a cure at the doorstep, if another shift in the cultural model of AIDS is just around the corner; a cultural model of “being cured of AIDS,” or of the possibility of the elimination of the AIDS epidemic altogether?
2.2.3 Aids as socioeconomic disease—the continuing gap
As we have seen, AIDS is a biomedical reality and it is a sociocultural construction. Because of the statistics, we must conclude that AIDS is a socioeconomic disease as well. At the time of the first edition of this book, the inner cities of the U.S. as well as the African American and Hispanic populations had been hit hardest by the epidemic (Flynn and Lound 1995:56; Singer 1999) and it had been predicted that the world’s underdeveloped nations would likely bear the brunt of the AIDS epidemic in the future (Flynn and Lound 1995:60; Singer 1999). Prospects of declining interest in the subject (due to the advent of new treatments and the phenomenon of AIDS fatigue) in the West had AIDS experts worried that there would be a growing gap between the rich and poor nations of the world in regard to AIDS. This “growing gap between rich and poor nations” was even the focus of the World AIDS conference held in Geneva (1998). In Europe and North America, AIDS treatments (ART) were developed that cut the death rate significantly, but the spread of HIV and AIDS in the third world continued unabated. It seemed that AIDS was quickly becoming a disease of the poor, both internationally and within nations. Merrill Singer (1999) asked the appropriate question: “How do we ensure that the new AIDS treatments are not the exclusive property of people in rich countries and rich people in other countries?” As I alluded to earlier, the cost of AIDS treatment was outside the realm of possibilities for many third-world governments and individuals at that time. The Economist reported (1997) the expectation that these new therapies would cost over ten thousand dollars yearly, and that “nine out of ten people who contract AIDS live in countries where $10,000 a year exceeds by many times the gross domestic product per head.”
A newspaper article from that time (The Register-Guard 1997) demonstrated another facet of this socioeconomic issue: profits. In a South African court, U.S. pharmaceutical companies (with U.S. government assistance) were seeking to block a new law that allowed generic versions of AIDS drugs (generic copies of those that were available in America) to be manufactured locally or imported without permission of the patent holder. The U.S. companies challenged the law on the grounds of patent infringement. The goal of the law was to reduce the cost of the AIDS-fighting drugs, making them more affordable for their populace. The drug companies argued that the law “undermines their industry’s multibillion dollar research efforts and could hinder the development of new AIDS-fighting medicines.” Critics charged that the move was all about profits, a charge that seems warranted. The companies claimed sensitivity to the dire epidemic in the third world, but insisted that the pharmaceutical industry “must protect the rights of its companies to profit from their research.”
So ten years later where do we stand? Around the world overall HIV infection rates are mostly in decline (as noted previously).41 Despite that fact, it was acknowledged recently at the International AIDS Conference (2012) that hunger and malnutrition are now significant obstacles to the global fight against HIV (World Food Program 2012).42 And hunger and malnutrition are generally problems of poverty. Likewise, the Center for Disease Control (CDC 2012) continues to report that “Poverty can limit access to health care, HIV testing, and medications that can lower levels of HIV in the blood and help prevent transmission. In addition, those who cannot afford the basics in life may end up in circumstances that increase their HIV risk.”
So on the global level, socioeconomic disparity would seemingly still play a role in the unequal success of treatment. And if cuts to global ART subsidies spoken of earlier become a reality, only the rich countries and the rich in poor countries will continue to benefit from the medical advances available.
And even in the developed world, socioeconomics still creates an obvious divide in the epidemic as well. In Washington D.C., America’s capital, the HIV prevalence rate is higher than the third world countries of Gambia, the Democratic Republic of Congo, and Senegal (Boseley 2012a).43 If the city were its own nation it would tie with Togo as the twenty-second worst nation in the world in regard to its estimated HIV infection rate; this at a time when the nation’s overall infection rate (0.6%) would place it at number sixty-four overall in the world.44 So, what explains the discrepancy? Poverty (The Guardian 2012). And in 2011 Dr. Michael Sagg, Director of the Center for AIDS Research at University of Alabama was asked, if despite the progress mentioned earlier, there was still any particular American population remaining in the “bulls-eye” of the epidemic. Dr. Sagg responded, “It’s mostly people of lower income and especially minorities. And in Alabama, in rural areas, there is a large number of people who are HIV-infected and don’t know it, and that’s the tragedy” (NPR 2011). So, even with the ability to treat HIV and AIDS in the West, it is the poor, mostly minorities who continue to suffer the most. It seems as if the socioeconomic gap noted ten years ago remains a reality even into the present.
2.3 Chapter conclusion
Between the time of the first discovery of a handful of AIDS cases in the USA (1981) and the early 1990s, AIDS had become one of the worst epidemics the world had ever known. By then over four million people had died, several million more were living with HIV, and it seemed as if AIDS was spreading like “wildfire.”45 Prevalence rates in some countries of Southern Africa were estimated to be near 30–40 percent and predictions for the future were dire (Knight 2008). In response, the United Nations established the Joint United Nations Programme on HIV and AIDS (UNAIDS) in 1996 in an effort to more effectively deal with the growing pandemic. However, by the early 2000s, mostly due to better surveillance, the original figures for Sub-Saharan Africa began to be revised downward (Asamoah-Odei et al. 2004). And since 70 percent of the cases presumed to exist at that time were in that region, the prediction for the overall size of the epidemic was adjusted significantly as well. Although still very significant—nine of forty-one countries in the region still list prevalence rates of between 11 percent and 25 percent as of 2010 (UNAIDS Global Report 2010)—prevalence rate figures are now half of what they once were. The overall prevalence for the region is now listed at around 5 percent (UNAIDS 2011).
As estimates were modified downward and our understanding of the epidemic grew, fear lessened that AIDS around the world would ever reach the rates seen (or over estimated) in sub-Saharan Africa.46 Prevalence rates grew only modestly among the general population of the world over the next few years, and then came the discoveries and application of ART in the mid to late 1990s. As the pandemic peaked and actually began to decline globally around 2000, some began to question whether AIDS still warranted an “exceptional status” (Smith and Whiteside 2010:47).47 In response, the WHO and UNAIDS announced they would take a common stand against the three deadly communicable diseases of HIV and AIDS, tuberculosis, and malaria (WHO 2000).48 Although political will to fight these epidemics had been established, in 2001 United Nations Secretary General Kofi Annan called for the creation of a global fund to channel additional resources, and in 2002 the Global Fund to Fight AIDS, Tuberculosis, and Malaria (known simply as “The Global Fund”) was established and has become a major conduit for funding for the trio of remaining worldwide epidemics.49
Even though global prevalence rates are now lower than once thought and new HIV infections and AIDS-related deaths are down overall, HIV and AIDS still continues to warrant our attention. Three-quarters of AIDS-related deaths take place in the Sub-Saharan Africa region and the highest prevalence rates are among the productive age group, resulting in a missing generation, which in turn creates huge social issues (e.g., AIDS orphans, grandmothers having to raise their grandchildren, not enough “workers,” etc.). The destruction of human capital retards economic growth in these already poor areas, intensifying poverty and resulting in a higher susceptibility to HIV, which has been linked to malnutrition, a byproduct of poverty. Also, in many of the third-world countries of the world, the co-infective relationship between HIV and TB is concerning (I will talk about this in relationship to Nepal in the next chapter).
Meantime in the West, the cultural model has shifted from a death sentence to a chronic manageable treatment, with a cure even possibly in sight (as noted previously). But even in the developed West there are problems with the increase in new infection rates among some populations as AIDS fatigue has set in and the poor have unequal access to ARVs and HIV education, as noted earlier. And new issues of medical complications associated with antiretroviral treatment and questions about quality of life for some even in developed countries have emerged, placing more realistic parameters upon our expectations for ART.50 In response to the recent trajectory of HIV and AIDS worldwide, the Executive Director of UNAIDS, Michel Sidibé, expresses both hope and concern:
Hope because significant progress has been made towards universal access. New HIV infections have dropped. Fewer children are born with HIV. And more than 4 million people are on treatment.
Concern because 28 years into the epidemic the virus continues to make inroads into new populations; stigma and discrimination continue to undermine efforts to turn back the epidemic. The violation of human rights of people living with HIV, women and girls, men who have sex with men, injecting drug users and sex workers must end. (Sidibé 2009)
And UNAIDS and WHO in their combined AIDS Epidemic Update (2009:8) conclude:
AIDS continues to be a major global health priority. Although important progress has been achieved in preventing new HIV infections and in lowering the annual number of AIDS related deaths, the number of people living with HIV continues to increase. AIDS-related illnesses remain one of the leading causes of death globally and are projected to continue as a significant global cause of premature mortality in the coming decades (WHO 2008). Although AIDS is no longer a new syndrome, global solidarity in the AIDS response will remain a necessity.
Since the first edition of this book (2003), the changing face of HIV and AIDS is certainly evident. HIV-related mortality rates have peaked and the total number of people living with the virus in 2008 was more than 20 percent higher than the number in 2000. At that same time the number of infections had fallen over the preceding eight-year period (and was 30 percent lower than at the epidemic’s apparent peak in 1996). It is clear, however, that our work with HIV and AIDS globally is not done. In this chapter we have looked at AIDS from a biomedical, social and socioeconomic view. We have examined the construction of various cultural models of AIDS around the world noting that each is specifically unique to the social and cultural factors that have influenced their formation. We have also examined the new treatments which are changing the face of AIDS around the world and have also considered the various social and socioeconomic factors that are continuing the gap between the rich and poor and between the West and the rest in their fight against AIDS. Next, we will examine more specifically AIDS in Nepal.
3 : AIDS in Nepal
At the time of the first edition of this book (2003) there were some pretty dire predictions being made regarding the HIV and AIDS epidemic in Nepal. The number of AIDS cases had increased fifteenfold over a three-year period (1990–93) and was expected to reach 100,000 cases by the year 2000 (Suvedi et al. 1994). The total number of HIV-infected persons in South and Southeast Asia had surpassed the total number of infected persons in the industrialized world (Dhalburg 1994), and at the 1996 worldwide conference on AIDS it was estimated that India, Nepal’s giant neighbor, had more HIV-infected persons (3-5 million) than any other country in the world (Spaeth 1996). Given the geographical proximity and historical relationship of trade between India and Nepal, it was expected that AIDS would grow at an alarming rate in Nepal as well. There was also frequent travel of both tourists and nationals between Thailand and Nepal, and Dixit (1996:50) suggested that “Nepal’s overwhelming reliance on tourism for foreign exchange also increases the possibility of easy access for the virus. Nepal has direct links (through sex workers and businessmen) with the two cities with highest and second highest prevalence of HIV infection in Asia—Bangkok and Bombay.”
In 2003, Thailand had one of the highest incidences of HIV infection in Asia (World Health Organization estimated two to four million by year 2000) and migration between Nepal and Thailand seemed likely to further facilitate the spread of HIV and AIDS into Nepal. As one author warned, all of these factors pointed to an expected “coming crisis” for Nepal (Seddon 1995:2).
Ten years later, HIV and AIDS has not become the crisis we had once expected it to become. As mentioned previously, estimates for nearby India were revised downward and the current estimates for Nepal place the prevalence adult rates among the general population at just 0.3 percent (NCASC 2012), well below even the United States. This is better news than the earlier predictions. However, HIV and AIDS in Nepal still warrant our attention. HIV remains a concentrated epidemic among several high risk groups, and the connection in Nepal between HIV and drug resistant51 tuberculosis is very concerning for the future. So, while there has been progress, many of the factors that influence the discrepancy between the west and the rest (spoken of earlier) still impact Nepal as well.
The purpose of this chapter will be to examine in-depth the current HIV and AIDS situation in Nepal. This will include a presentation of the most current epidemiological information as well as a critical examination of the literature published on HIV and AIDS in Nepal. I will discuss the various HIV and AIDS prevention models that have been promoted in Nepal and introduce the major Nepali discourses on HIV and AIDS that have emerged since the AIDS epidemic arrived in Nepal. I will also introduce the key ideas associated with AIDS in the literature—ideas, which we will see in later chapters, have been influential in the creation of a dominant cultural model of HIV and AIDS in Nepal.
3.1 The epidemiological “facts”
The first case of AIDS was identified in Nepal in July 1988 (Suvedi 1998:53). Since then, the numbers have grown slowly but steadily. Or at least we think so. When talking about numbers in the context of Nepal, it is important to make a distinction between estimated HIV cases and reported cases of HIV and AIDS. Figures 3.1 and 3.2 display the latest cumulative estimates reported by Nepal’s National Center for AIDS and STD Control, the agency responsible for tracking such statistics nationwide (NCASC 2012a). Figure 3.3 displays the cumulative reported (i.e., “tested and confirmed”) number to date (NCASC 2012b).
Figure 3.1. 2012 Estimated HIV infections in Nepal: Part one.
Figure 3.2. 2012 Estimated HIV infections in Nepal: Part two.
Figure 3.3. 2012 Cumulative HIV and AIDS infection reported in Nepal.
According to the estimated figures (fig. 3.1), just over fifty thousand persons are thought to currently be living with HIV in Nepal (0.3% prevalence among the general population). Of this number, 86 percent (43,239) are estimated to be adults aged fifteen to forty-nine, 8 percent (3,804) children aged zero to fourteen, and 6 percent (3,244) adults over fifty. According to these estimates, heterosexual transmission is still the dominant form of HIV transmission and HIV infection rates remain at “concentrated epidemic” levels among several high-risk populations, such as injecting drug users (IDU), men who have sex with men (MSM), female sex workers (FSWs), clients of female sex workers and seasonal migrant laborers. The NCASC concludes that “further intensifying the effective targeted interventions for high risk groups with improved coverage is critical to contain the epidemic among high risk groups and to prevent spread into large general low risk population” (NCASC 2012a). Likewise, USAID claims that due to targeted prevention interventions among these key population groups, new infections rates have decreased significantly over the past five years and that Nepal is “on track” to achieve the sixth Millennium Development Goal.52 They acknowledge, however, that “it is critical to improve coverage in order for HIV and AIDS programs to reach the national target of halving new HIV infections by 2015. In addition, despite continuous efforts to combat stigma and discrimination, such barriers have remained major impediments to open access to information and services”(USAID 2013a).
According to the reported figures (fig. 3.2), the numbers for the same period are less than half of the estimated number. Interestingly there is clear continuity (and even verbatim language) between the National Center estimated statistics (figs. 3.1 and 3.2) and UNICEF, UNAIDS, USAIDS, and WHO estimates. The “HIV epidemic update of Nepal,” provided by the National Center, cites “NCASC 2011” and “NCASC 2012” for its data, but there is no explanation about how the National Center derives their estimates. It is hard to tell whether these organizations mentioned earlier get their estimates from the National Center or vice versa? As one who has studied HIV and AIDS in Nepal for well over a decade, I am always mystified as to how these estimated numbers are derived.53
To be fair, it has always been difficult to accurately assess HIV numbers in Nepal. In the early years of the epidemic, reporting of AIDS was thought to be very low (Suvedi 1998:53). At that time, Dixit (1996:46) concluded that “there can be no doubt that there have been deaths in Nepal from AIDS which were not recognized” and that “there are probably people ill with AIDS today whose condition has not been diagnosed.” Often times, people died in a village and the actual cause of death was never actually determined. Also, because of the nature of AIDS, often the cause of death was reported (if at all) simply as an opportunistic infection and no association with AIDS was ever made. In most places in Nepal, HIV tests were then unavailable. Even if they were available, many were not interested in determining if they were HIV positive, either because of lack of awareness about HIV, prohibitive cost involved in getting such a test, or desire to avoid the social stigma then attached to HIV positive persons in Nepal. Measuring prevalence (known as “sentinel surveillance”) was initiated among the general public but was far from successful due to various logistical problems (Maskey 1998). And today many of these factors still prevent accurate counting. According to the Director of the NCASC, the biggest barrier to accurate numbers today is that little headway has been made in testing (Sharma 2010). Dr. Rai admits that Nepal still “lags behind” in identifying infected cases who remain “hidden” in “fear of exposing themselves to the public” and concedes “the unidentified infected cases are exactly the reason why Nepal will not be able to meet the Millennium Development Goal (MDG) of halting and reversing the spread of HIV and AIDS by 2015” (Sharma 2010). So while various international agencies working from estimated numbers are touting Nepal’s success for meeting their goals, given the real numbers and the concessions by those leading the efforts in Nepal, it makes one wonder how we can be so certain of the progress?
Despite the discrepancy between estimated and reported numbers there are a few epidemiological “facts” that seem certain. By 1998, HIV infection had been reported in fifty-eight of Nepal’s seventy-five districts and the main concentration of cases was in the central and eastern regions, namely, the capital and surroundings areas (Suvedi 1998:54). Early studies focused mainly on high prevalence rates which had reached and surpassed “concentrated epidemic” levels among those practicing high risk behaviors in the city regions. Several authors presented papers concerning HIV prevalence among these various groups at the Second National Conference on AIDS held in Kathmandu in 1998. Shrestha and Gurubacharya (1998) found the prevalence of HIV among female sex workers (FSWs) in the capital city to be 20 percent. In another study, Gurubacharya (1998) found the prevalence rate among non-migratory FSWs in Kathmandu had increased from 0.66 percent to 8.66 percent over a three-year period. The significance of this second study is that it was limited only to FSWs who had never been to India, thus suggesting that HIV infection had moved into, and for the first time was being spread by, the local FSW population rather than being limited to those coming from the outside.54 Among injecting drug users (IDUs) the prevalence rate was found to be 48 percent (Shrestha 1998). Interestingly, these earliest studies seem to be the basis for much “recirculation” of data that continues to be cited (as “current estimates”) throughout the most current literature.55 Since the publication of these original articles, it would appear that there has been a dearth of primary biomedical studies on these topics and some follow up studies are needed for comparative purposes. Once again, estimates can be deceiving.
In recent years, the epidemiology of HIV in Nepal has begun to shift. HIV has now been detected in all regions of Nepal (Sharma 2008) and the largest numbers of HIV sufferers are to be found in the west and midwest of Nepal where out-migration rates are the highest. Male migrant laborers and their wives now make up the largest group of infected persons. According to Dr Krishna Kumar Rai, Director of the NCASC, by 2010 this group made up 45 percent of the total number of infected persons (Sharma 2010). Further, Rai admitted that by that same year prevalence rates in the midwest and far west regions had reached “generalized epidemic” levels with between 2–3 percent of the region’s population infected with HIV (Sharma 2010). So while it is difficult to discern between the rhetoric of estimated and reported numbers it would appear that there is still work to be done.
There have been four proposed worldwide patterns of HIV spread. According to Gurubacharya (1996), in pattern one countries, HIV spread mainly among homosexual males and IDUs beginning in the late 1970s and early 1980s. This is the main pattern initially identified in the United States, Europe, Canada and Australia. In pattern two countries, HIV affected the general population beginning about the same time period, but mainly spread heterosexually and in the prenatal period. This is the main pattern found in sub-Saharan Africa, Latin America, and the Caribbean. Pattern three, identified as beginning in the late 1980’s, is characterized by HIV infection generally being “contained” within “high risk groups” such as FSWs and IDUs. This is the main pattern identified in Asia, Eastern Europe, some Pacific countries and the Middle East. In the mid 1990s a fourth pattern (pattern four) was proposed for parts of Asia (Brown and Xenos 1994). Pattern four is comprised of five waves of infection. The first of these was among homosexual or bi-sexual men having contact with foreigners. The second wave was among IDUs. The third was among FSWs and their clients. The fourth wave was among the girlfriends and wives of the FSW clients. And the final wave was among the children of these women. Smith (1996:8) suggests that this new pattern most closely fits (with a few modifications) the situation in Nepal.
Dixit (1996:15) reported that the first wave of HIV and AIDS in Nepal was among Western tourists and FSWs returning from India. The second wave spread to the clients of these FSWs (the largest group being truck drivers and soldiers), mainly Nepali men, and to the population (many who were concurrently clients of FSWs) and spread rapidly among this mostly male population. Since then, the third wave, which began in the early 2000s, dominated with the highest numbers of HIV cases among migrant males, who have been bringing HIV home and transferring it to their wives and unborn children. And recently the fourth wave has begun; as of 2010, housewives of these men have become the single largest group accounting for nearly 45 percent of all new infections (Sarkar 2010). This assertion is confirmed by the estimates given in figure 3.1. It is also likely, given the numbers of HIV positive children reported (1,372 in fig. 3.3) and estimated (3,804 in fig. 3.1), that the final fifth wave (noted by Smith above) is also well underway in Nepal.
Although these types of epidemiological studies are a crucial part of a deeper understanding of the complexities of HIV and AIDS in Nepal, they often ignore the complex social issues involved in the spread of the disease. These issues will be the focus of the remainder of this chapter.
3.2 Nepali HIV and AIDS literature
The HIV and AIDS literature reviewed from Nepal generally falls into three broad categories: strict bio-medical and epidemiological profiles (e.g., those from which the above data is derived), literature that focuses primarily on the structural factors contributing to the HIV and AIDS problem in Nepal, and literature that focuses mainly on aspects of individual agency or various cultural traditions. Factors in each of these categories contribute to the spread of HIV and AIDS in Nepal. I have already addressed the epidemiological literature. In this section I will focus on the literature which addresses the social side of HIV and AIDS in Nepal. In each section I will first address the early years of the epidemic and then address the newer literature.
3.2.1 Structural issues
The dominant discourse in Nepal during the early years of the epidemic (and still a prevailing discourse today) goes something like this: Commercial sex work has been identified as the main route through which HIV infection has entered the general population (Cox and Suvedi 1994; New Era 1997; Sattar 1996). This happened through three main channels: (1) Nepali women are “trafficked” to India (usually Bombay) where they work as FSWs for some years.56 Then, either after “retiring” or being repatriated for being HIV positive (Dixit 1996:52; Smith 1996:10), they return to their homeland of Nepal, where they continue to work, thus spreading the AIDS virus to the remotest corners of Nepal (Sattar 1996). (2) Nepali men in search of work migrate in large numbers to India and further abroad where they subsequently obtain the services of HIV-infected FSWs (Cox and Suvedi 1994; Smith 1996). They then return home, transmitting the virus to their unsuspecting wives, who subsequently pass the virus to their unborn children (Poudel 1994). (3) Truck drivers and soldiers are well known for their promiscuity and preference for unprotected sex (Sattar 1996). These factors, coupled with the transient nature of their occupations, make soldiers and truck drivers natural conduits for the spread of HIV and AIDS along the roads and trails and into the remotest corners of Nepal.
Because commercial sex work has been identified as a primary factor in the spread of AIDS in Nepal, the discourse on HIV and AIDS has subsequently been subsumed within the wider discourse of commercial sex work and other related discourses such as “girl trafficking.” Those analyzing the issue of HIV and AIDS in Nepal from a critical medical anthropology (CMA) perspective or a political economy medical anthropology (PEMA) perspective, tend to focus on the underlying causes of commercial sex work in Nepal. Prostitution and occupational migration are viewed as the result of deeper economic and political problems. David Seddon, for instance, suggests:
There has been, and remains, a tendency...to focus attention on women, both as sources of infection (prostitutes) and as the main victims. While understandable, this tends to result in an under emphasis of other factors which contribute to the spread of infection and the development of the epidemic. The economic and social pressures which force women into prostitution, and men to make use of commercial sexual services, and the economic rewards which lead men to organize the sex trade as a source of profit, also need to be analyzed and understood. (Seddon 1995:4)
So, for Seddon, the root of the problem of HIV and AIDS is not commercial sex work, rather it is the economic and social pressures which push women into this profession, and which push men abroad where they are vulnerable to the use of commercial sexual services.
Likewise, Meena Poudel (1994:10–11) suggests that rural women are the most adversely effected by poverty in Nepal and that poverty is, in turn, “the principle cause of the greater risk of HIV infection in Nepal.” Poverty, according to Poudel, is mainly a result of “resources being whittled away by multi-national companies” that leads women to pursue prostitution because of a lack of viable alternatives. Poudel claims that “the main reason for this situation among women can be ascribed to widespread poverty, low status, lack of decision making rights, lack of access to time for education and information, rural-urban imbalances, inability to assert their rights, and so on” (1995:11).
Dixit (1996:50) also reflects this political economy approach when he concludes that in Nepal, “poverty is the root cause of the problem of AIDS,” and that prostitution and migration, “two processes that expose the Nepali population to the HIV virus,” are “the result of an attempt at poverty alleviation.”
Another study of STD and HIV infection among prostitutes in Calcutta (based on self-reporting) found that extreme poverty, illiteracy and family disturbances were among the factors most responsible for leading FSWs into prostitution (Chakraborty et al. 1994:165).57 The authors claim that economic necessity was the most important reason for entry into prostitution and that “illiteracy was probably the main reason why they could not struggle to find some other means of livelihood and resorted to sex trade as the best alternative.” Again, economic necessity is stressed as the structural factor contributing most greatly to the spread of HIV and AIDS. Various other authors who note poverty as a key factor strongly linked to the spread of HIV and AIDS in Nepal are Sattar (1996), Keyser (1993), Nigam (1994), Smith (1996), Dixit (1996), and Suvedi, Baker and Thapa (1994). And more recent studies on HIV and AIDS in Nepal continue to address the epidemic from this perspective (e.g., Poudel and Carryer 2000, Sarkar et al. 2008, Rodrigo and Rajapakse 2010).
Although a CMA or PEMA perspective is useful and adds another dimension to the earlier epidemiological perspective, this structural approach tends to ignore the agency of the individual in making his or her own decisions. For instance, in the Calcutta survey (Chakraborty et al. 1994), the authors found that 39 percent of the women who had turned to prostitution claim they did so of their own volition, yet they don’t address this issue anywhere in their findings. The focus of the article is only upon the structural factors influencing the 61 percent who claim to have been forced into prostitution through economic necessity. In a study of 289 FSWs in Nepal, 66.7 percent cited “necessity” while 21.4 percent cited “pleasure” as their reason for entering the sex trade (Karki, Geurma, and Suvedi 1995). Although 51 percent of FSWs in another study (Bhatta et al. 1994) listed “economic hardship” as their main motivation for entry into the sex trade, “enjoyment,” “separation from husband” or “husband’s long absence from home,” and “husband’s polygamy” were other reasons given. In a third study of FSWs in Pokhara, Nepal, the authors found that many women self report that they have chosen this profession of their own volition. The authors quote one woman as saying:
I do not care what people say but I am happy to be earning money in such an easy way. I can feed my child, have a place to live, eat good food, wear good clothes, move around in taxis... it gives me great relaxation when I have sex! Any ways nobody will give me any other job and I do not want my child and myself to starve. I saw my friends earning and I did not find it wrong and I started working too. (Baral 1999)
I imagine many CMA or PEMA advocates would argue that these women’s own words do not fully represent the “whole picture” (and they are right). It is clear, however, that in some cases, individuals can and do (at least in part) manipulate the system, and this perspective is completely absent in the CMA or PEMA analysis of the HIV and AIDS situation in Nepal. Poverty certainly explains why many women enter the sex trade, but it does not explain why all do so. A study from 2008 (Sarkar et al.) might provide a healthy middle ground between these two seemingly polar positions. In this study the authors note that 68 percent had joined prostitution “voluntarily” (meaning that they were not “trafficked” in the traditional sense), thus, they had exercised a degree of personal agency in their decision to become a CSW, but perhaps they had done so ultimately for structural reasons (i.e., poverty).
Migration has also been a factor identified as contributing to the spread of HIV and AIDS in Nepal (Seddon 1995). As mentioned previously, it is believed that many migrant laborers are bringing the HIV virus home with them when they return to Nepal. In 1994 it was estimated that there were up to 200,000 Nepali women involved in the sex trade in India (Poudel 1994). There are also many Nepali men working abroad. In 1981, it was reported that over one-half million Nepalis were working away from home and that the majority of these migrants were from the mid-hills region (Savada 1991:72). By 1981 that number had grown to more than 762,000. And by 2011 that number had grown to 1.9 million. Today, one out of every four households reports one or more members of the household absent. The highest proportion (42%) of those absent is in the fifteen to twenty-four age group and the absentee rates were still highest in the middle-hills regions of the Western and Mid-Western Development Zones (NPHC 2012). In a family planning survey conducted in Gorkha District in 1995, I found that of the women surveyed, 40 percent of their husbands were working abroad (Beine 1996). Likewise, in my research in the village of Saano Dumre in the late 1990s, 56 percent of the men were reported to be working either in India or further abroad. The implications of such large migrations are obvious. Migrant laborers and their wives now make up over one half of the current HIV infections in Nepal.
Besides those mentioned above, there are also other semi-migratory groups not usually considered in the migration figures, whose practices are also cited as contributing to the spread of HIV and AIDS in Nepal. Seddon includes the following groups:
Truck drivers taking loads to and from India; smugglers operating across the borders; officials making formal visits; merchants and traders traveling on business; small farmers involved in seasonal or temporary labor migration—all of these are internationally mobile—and have become increasingly so—and may contribute to the spread of HIV infection into Nepal. (Seddon 1995:5)
Seddon, focusing on structure, views most of these occupational choices as strategies necessitated by the economic pressures of poverty.
Many other authors also cite poverty as the main factor contributing to migration in Nepal. Smith (1996:139) comments that among the populations of the middle hills, there is an ever increasing need for farming families (90% of Nepal’s population) to supplement their income through migratory labor. Sattaur (1993:15) reports that 6 percent of Nepal’s population owns 46 percent of the cultivatable land and that 75 percent of the population own less than one hectare (2.74 acres) of land. Sattaur (1993:15) also reports that the average family of five requires one hectare of hill land for subsistence. The average size of a Nepalese family sharing one hectare of land is well beyond five members. Beside this, heavy deforestation is creating loss of precious topsoil and is further reducing agricultural productivity. The result is that most families raise only enough food to support their needs for part of the year and then must rely upon supplemental income from family members who migrate to the city or abroad in search of work. The United Nations Children’s Fund cites increased population pressure, scarcity of arable land, limited food production, underemployment, debt, exploitation, and hunger as the main “push” factors for migration in Nepal (UNICEF 1992:14).
Nepal’s insufficient infrastructures (poor roads and communication systems) are also believed to structurally contribute to the spread of HIV and AIDS. Poor infrastructure begets poor education and illiteracy, which in turn, facilitates low awareness, which then cultivates the spread of HIV and AIDS. Likewise, as mentioned earlier, these same issues create structural barriers to HIV treatment; availability does not necessarily mean access. The wider world’s cultural model of ART (solving the HIV crisis through treatment rather than prevention) is just not a reality for Nepal at this time. Even if available free, many barriers to HIV treatment remain: physical barriers—frequent strikes make travel impossible and bad weather often closes roads for days at a time; financial barriers—patients have to pay to travel to distribution centers and require food and lodging while there (they are taken away from work for the time required and cannot leave unattended children at home, etc.); and the stigma associated with HIV. Many of these barriers will be evident as I discuss newly emerging HIV narratives in chapter six.
Conflict or war should also certainly be considered as a structural issue. The impact of war upon healthcare is well documented in the literature. Various authors have noted the direct and lingering effects of war on healthcare and healthcare delivery. Paul Farmer (2006) has commented that political instability and violence has had similar effects in Haiti. According to Farmer, “the deaths from Haiti’s cycles of violence do not all come by gunfire. Riots and revolutions, and lawlessness have also interrupted the healthcare that Haitians receive.” According to Farmer there are the obvious, directly related results of conflict that impact healthcare delivery, such as treatment of gunshot wounds, low blood supply, destroyed medical facilities, etc., but there are other more pernicious ways that disruptions in political systems can disrupt entire healthcare systems. He points out that treatment of chronic illnesses (such as HIV and AIDS) require a stable health provision system and this is severely impacted by conflict. War often means no functioning laboratories (due to destruction of facilities, disruption in power supply, etc) and lack of services and lack of equipment to treat people. And many health care providers, facing this lack of facilities and shortages of essential supplies, often depart in frustration. Likewise, many health care providers, fearing for their lives or the lives of their families (and because they have the financial resources to do so) will often depart these war zones for safer ground. The lack of necessary supplies and essential healthcare workers means the cessation of essential services vital in the ongoing treatment of chronic illness. Farmer has concluded that “you can’t do public health in a war zone. You can do your best to patch people up but you can’t really do good public health in the middle of political violence. It’s just not possible.” In relation to Nepal, several authors have noted the toll that the ten year long civil war has had upon the spread of HIV and AIDS in Nepal (e.g., Singh et al. 2005, Beine 2006, Karkee and Shrestha 2006, Pokhrel et al. 2008, and Ghimire 2010). In one of the most poignant examples, Ghimire (2010) illustrates how “social separation” precipitated by war led both men and women of rural Rolpa District into behaviors that exposed them to the risks of contracting HIV.
David Seddon has also suggested that environmental degradation, a byproduct of poverty, has played a role in the spread of HIV and AIDS in Nepal:
The resources of the hill areas in the hinterland of the Kathmandu Valley urban centers, perhaps more than anywhere else in the country, have been progressively degraded and depleted as demand for wood fuel has increased over the past decades. With increasing land degradation and inadequate access to forest resources or land for agricultural production, the inhabitants of these areas have become increasingly reliant on selling their labor and their bodies to provide their families with a living income. (Seddon 1995:7)
Between 1950 and 1980, Nepal’s forest cover was cut in half and deforestation continues to occur at an alarming rate. Savada (1991:125) suggests increased demands for grazing lands, farmland and fodder for animals, combined with the growth of human population and people’s dependence upon firewood for energy, as the major factors inciting deforestation in Nepal. In turn, major deforestation has caused erosion that limits the future productivity of agricultural lands. Savada (1991:72) also suggests that the large migration figures from the mid-hills are “an unmistakable indicator of the region’s deteriorating economic and environmental conditions.”
We have seen that many authors have made a strong link between poverty and commercial sex work, migration, war and even environmental degradation, and that this factor (poverty) is facilitating the spread of HIV and AIDS in Nepal. These authors contend that the search for alternative forms of employment is most often a response to dire economic situations. Again, Seddon concludes:
The clear implication is that it is the degradation of resources and poverty that creates vulnerability and drives the rural poor, particularly from certain identifiable regions, into economic survival strategies that take them away from their homes to work elsewhere; migration is a necessity, and as far as employment is concerned, “beggars cannot be choosers.” (Seddon 1995:7)
It is not difficult to understand why such focus has been placed on Nepal’s poverty as the root cause of HIV and AIDS. Nepal is one of the world’s poorest nations as noted earlier. We have also seen, however, that there is a growing awareness that personal agency (including various cultural practices) is also involved in the spread of HIV and AIDS in Nepal. This will be the focus of the next section.
3.2.2 Issues of agency
As opposed to the focus on the structural factors pushing people into lifestyles that facilitate the spread of HIV and AIDS in Nepal, many authors have focused more on the personal choice (agency) involved, as individuals or communities adopt lifestyles or strategies that are contributing to the wider problem. Bhatt, Gurubacharya and Vadies (1993), taking an agency approach, studied a unique cultural group in the southwestern part of Nepal that relies exclusively on prostitution for economic security. This group, known as the Badis, was interviewed about its sexual practices and was tested for VDRL and HIV positivity.58 Although 70 percent were found to be VDRL positive, none tested positive for HIV. The article focuses upon the Badis’ choice of prostitution as an economic strategy enabling them to own lands and houses, something unusual for a low-caste group such as the Badis. The authors trace the unique history of the Badis.59 They conclude:
Like Gypsies, [the Badis] would travel and provide musical entertainment for hire...and would entertain at the homes or estates of wealthy landowners in the region. Probably some landowners began paying young Badi girls’ high fees for sexual favors, in addition to the other entertainment being provided. This was probably very tempting to Badi girls as well as the family and the community, which were always economically deprived as part of the untouchable caste. This caste is the lowest caste, lower than even the fourth caste in the traditional Hindu caste system. More recently, income primarily from prostitution has enabled some Badi families to own land and homes, something normally unheard of for most members of an untouchable caste. (Bhatt et al. 1993:280)
The first point I would make about the above quote is that it illustrates the highly speculative nature of this piece. “Probably” is overused and deserves the criticism of CMA advocates who would accuse these authors of blaming the victims. On the other hand, moving beyond this weakness, the authors do acknowledge the political economy involved in the caste system but choose to focus further upon the personal agency behind the Badis’ choices. The article describes a sliding fee scale developed by the Badi (politicians are charged the most), the ‘marriage’ ceremony at which a Badi girl is initiated into the sex trade, and their preference not to use condoms. Concerning the latter, the authors write:
When questioned about the non-use of condoms, Badi women again stated the desirability of pregnancy and the resulting possibility of more female sex workers within the family...family planning is not a priority. This is because the Badi view female offspring as future economic security as prostitutes. Male offspring are still accepted but are not considered as desirable as females. (Bhatt et al. 1993:282)
The article concludes that although the Badi are currently uninfected with HIV and AIDS, their practices and choices put this group at the highest risk of HIV infection in the near future. The authors suggest that “there is some evidence that counseling alone may have little or no effect in getting prostitutes to leave their profession, even after they have become HIV infected. There is also some evidence that despite efforts at training and providing alternative employment to Badi prostitutes, they return to their practice in a short time (1993:282).”
Bignall (1993), in a review of Bhat, Gurubacharya and Vadies (1993), for the British journal The Lancet, focuses further on the agency of the Badi that is exacerbating the epidemic. These two articles clearly reflect a focus on the personal choices (agency) of the Badis in manipulating the system and in determining their own future.
Near the turn of the century, various writers began to challenge the traditional girl trafficking discourse (which was the main discourse at that time).60 John Fredrick (1998) asserted that much of the discourse was, in fact, myth. The consensus view, he contended, was that a majority of women trafficked to India were being abducted and sold into sexual slavery as prostitutes mainly in the brothels of Bombay. Fredrick termed this sort of trafficking “hard trafficking.” The reality was, he suggested, that much of Nepal’s girl trafficking was actually done with the families’ own complicity. He termed this form of trafficking “soft trafficking” and suggested that in most of the cases of girl trafficking, the families’ own agency was involved. Many more women actually were going of their own free will; or at least with their families’ firm encouragement and blessings. Prostitution, as it was among the Badi, was more of an economic strategy to address the growing problems of providing dowries, paying off generational debts from an established bonded-labor tradition, or providing a better quality roof (tin) for the family home. Fredrick (1998:19) claimed that this “family-based” prostitution in Nepal was “an increasingly common response to poverty and a significant source of rural income.”61 Likewise, Campbell (1997:220) suggested that prostitution was simply the “latest form of commoditizing Tamang62 labour power.”
It seems clear that there are both issues of personal choice (agency) as well as wider socioeconomic (structural) factors that underlie commercial sex work in Nepal. Economic pressures are pushing people into commercial sex work in one of two ways: either as an economic strategy needed to survive absolute poverty (structural), or as a way to provide extra income for luxuries that could otherwise not be afforded (agency). Either way, as the earlier statistics reveal, commercial sex work puts one at highest risk for HIV infection, so both structure and agency are important factors to be considered.
3.2.3 Cultural issues
Besides issues of personal choice, there are also many widely held beliefs and cultural practices (usually considered issues of agency) that are contributing to the spread of HIV and AIDS in Nepal. The following list is a summary of widely held beliefs elicited from HIV positive persons at a local non-governmental organization (NGO) sponsored education class held in Kathmandu. These are all related to folk beliefs about prevention and cures for HIV and STDs.
1. Having sex with 10863 virgins will cure AIDS and STDs.
2. Cleaning the penis with urine, Detol soap64, or Coke, will cure AIDS and STDs.
3. Naag65 Puja will cure AIDS and STDs.
4. Anal sex will cause HIV.
5. HIV is prevalent only in Bombay.
6. A tika from Sai Baba placed on the penis will cure STDs and AIDS.66
As one can see, there are many widely held beliefs reported by these HIV positive persons that would actually advance the spread of HIV and AIDS.
According to Ghimire (1997:8), “There are certain cultural traditions in Nepal that approve the sale of girls and prostitution.” The Badi tradition spoken of earlier is one such case. The Deuki tradition is another. Smith (1996:27) explains that in the Seti Zone of far-western Nepal, parents offer their daughters to a temple deity in order to improve health, acquire a new job, get a son, or a number of other such reasons. The girls remain at the temple and are held in high esteem. Although the girls are unmarriageable, sex with a Deuki is said “to insure eternal bliss.” The similar Devidasi tradition is yet another. Chhetri (1998) explains that the Devidasi (which literally translates as ‘slaves of God’) tradition is “a distorted legacy of a seventh century religious practice in which girls were dedicated to temples to live as dancers. Today, the girls pledge fealty to the goddess Renuka, and then—with the full knowledge of their parents—are spirited off to brothels” (1998:3).
Several other authors also cite the sub-continental preference for Nepali girls as FSWs (Dixit 1996:52; Brewer 1995:4; Chhetri 1998), because of their “fair skin” and “oriental features,” an appearance found “so exotic” by Indian men (Chhetri 1998).
Another interesting belief about sex, which may contribute to the spread of HIV and AIDS, is held by truck drivers, one of the largest groups frequenting FSWs (Cox and Suvedi 1994:6). This common fallacy held by truck drivers is that long hours spent behind the truck’s engine “heats up the body” and that they can rid themselves of this harmful heat through frequent sex (Brewer 1995:6).
As mentioned earlier, there is a strong connection between migration and the spread of HIV. Nepal has a long tradition of migration. Seddon (1995) claims that the “search for employment abroad has always been an important feature of Nepalese economy and society.” In the 1950s, the government encouraged resettlement to the newly mosquito-eradicated Terai region of Nepal. And for at least 180 years the British Army also has been hiring Nepalis to fill its famous Gurkha regiments (Savada 1991:199). Likewise, Nepali watchmen have a positive reputation and can be found all over the subcontinent. In short, Nepal has a historical tradition, or culture, of migration. Although this tradition has always been rooted in the search for better financial opportunity, it would be a mistake to assert that poverty has been the catalyst for all people to migrate. Much of this migration has traditionally taken place from areas that were self-sufficient and where poverty was not a severe problem as it was elsewhere in the country. Many Nepalis have found a way to fill a foreign niche that has boosted their families’ economies tremendously. Unfortunately, this culture of migration results in faithful housewives (now the largest category of HIV suffers) bearing the brunt of the remaining epidemic in Nepal (as earlier statistics reveal) as well as facing the strong stigma that still remains associated with HIV and AIDS in Nepal (Beine 2011).
Many of the Tibeto-Burman cultures of Nepal’s mountainous regions also have traditionally practiced a semi-nomadic lifestyle. Seasonal migration has traditionally been a major feature of their culture as they brought salt from Tibet and traded it in India. Savada (1991:70) claims that these groups “historically were deeply engaged in interregional as well as cross-border trade with Tibet as their principle economic activity.” Again, for many of these groups, migration is a historical, chosen economic strategy that provides an above-average standard of living rather than a supplemental income-generating strategy designed to alleviate poverty. Dahal (1994) makes this assertion among the Byansi, a semi-nomadic group in far-Western Nepal. Nepal’s indices for measuring poverty usually include such features as land ownership, development of infrastructure, and availability of basic social services. Using this standard, the Byansi people are very poor. Dahal (1994:37), however, contends that they are actually one of the most prosperous peoples in the whole region. He claims that this is because “the conventional measurement of ‘income’ is unable to capture the diversity of local resources and their cultural modes of exploitation” (1994:36). Although it is clear that for many, migration is an economic strategy necessitated by low yields and growing populations, for others it is a tradition that has supplied economic abundance.
There is also a cultural tradition of drug use in Nepal. Shrestha focuses upon elements of Nepali culture that facilitate the use and abuse of drugs and alcohol. These include a historic cultural acceptance of alcohol use, recreational cannabis use by the elderly, and religious cannabis use by holy men (and distributed by the government for this purpose) (1992:1241–1242). IDUs have been identified as the second largest risk group for contracting HIV and AIDS in Nepal and although the issues need to be examined more closely, poverty does not seem to be the main cause pushing people into drug use. In a recent study among IDUs it was determined that the majority were highly educated and financially self-sufficient, earning well above the national average (Maharajan et al.1994).
Except for cases in Nepal where HIV is transmitted through drug use, HIV is spread mainly as a result of sexual transmission. In the earlier edition of this book I wrote much about the public or conservative versus the supposedly private or promiscuous nature of sex in Nepal. I concluded (based mainly on the existing literature) that “there has long been a tradition of premarital and extra-marital sex in Nepal” (2003:87). I used the writings of authors such as Cox and Suvedi (1994) who have “noted that ‘among young unmarried men the use of FSWs is well accepted’” and authors such as Smith (1996) and Gurubacharya and Suvedi (1994) to conclude that, “contrary to the portrayal of Nepali society as sexually conservative, premarital and extramarital sex is not uncommon.” I added anecdotal evidence from my own informants (all HIV positive): one who told me, for instance, of the “‘custom’ of being taken (by older friends) to a prostitute when ‘coming of age’” in a kind of “‘sexual initiation’” that is “not uncommon among Nepali boys”; and another who said that “promiscuity is expected among young men—Nepali men are assumed to be unfaithful,” to strengthen this working hypothesis. I concluded that “sex may be a taboo topic in Nepal…, but, as various authors have demonstrated, just because people are not discussing it doesn’t mean it’s not happening” (Beine 2003:87).67
In recent years, however, because of my studies and experience in Nepal, I have begun to doubt the veracity of such claims being normative among the wider society. Green, Farley, and Ruark have concluded that “national surveys in Africa and Asia repeatedly show that a majority of unmarried teenagers practice abstinence and that a majority of adults practice faithfulness to one partner in any given year (Green et al. 2009). Nepal seems to be no exception to this. For example, in a study of 573 male college students in Nepal, 61 percent report being abstinent (Adhkari and Tamang 2009). In a study of young factory workers in Kathmandu, 80 percent of young boys and 88 percent of young girl factory workers report being abstinent (Puri and Cleland 2006:237). In a seven district survey of Nepali teenagers done by UNAIDS and UNICEF, 78 percent of the boys reported no premarital sexual experience. And in another study of male adolescent students, 53 percent reported intent to remain abstinent until marriage (Iriyama et al. 2007:64). Interestingly, each of these studies (except the last) were all framed in the negative rather than the positive (as I have done above); that is, they only reported the percentage of sexually active (which was 39%, 20%, 12%, and 22%, respectively) and made comments regarding this data, such as, “These studies indicate a growing trend toward premarital sexual activities among adolescents,” “showed risky behavior especially among boys,” etc., and yet no comparative data is given to support these claims (Adhikari and Tamang 2009:242). Another study (Puri and Cleland 2006) states that “despite religious and cultural restrictions, one in five boys and one in eight unmarried girls reported experience of sexual intercourse,” and that “early sexual experimentation and low and irregular use of condoms are not uncommon.” Don’t these numbers actually show that the majority of unmarried adolescents are practicing abstinence? I don’t know how these authors would define “uncommon,” but if only two in ten boys is sexually active (which actually seems low to me), then early sexual experimentation is not common, although I am left with the impression that it is, based on the use of this negatively framed language. The same trend continues in the literature today. Regmi, Simkada and van Teijlingen (2010:61), citing many of these same sources, similarly concluded that “despite these generally traditional views [regarding sex] a significant proportion of young people are engaged in premarital and high risk-sexual activities.” Is there an ideology undergirding these perceptions? This is an issue I hope to address in a forthcoming publication. So while premarital sex is certainly not unknown, neither is it “common.” As I have reassessed, I would take a more middle ground position. It is not as conservative as publically presented and not as promiscuous as other authors would suggest. There also seems to be a growing rural and urban divide (including western sexual values) that accompanies urbanization. I will talk more about the implications of this later as I address prevention strategies.
In conclusion, it seems clear that the spread of HIV and AIDS in Nepal is due to a combination of complex factors. Structural factors, issues of agency, and culture are all involved in creating casualties and have extracted a high price.
3.2.4 KAP studies
Much of the social research conducted on HIV and AIDS in Nepal has been in the form of knowledge, attitudes, and practices or behavior (KAP or KAB) studies.68 The majority of the findings above (concerning the cultural factors that contribute to the spread of HIV and AIDS) are, in fact, the result of such KAP or KAB studies. This type of study is a product of the Health Belief Model69 and the Theory of Reasoned Action (Tones 1994) that posits lack of awareness as the primary factor contributing to the spread of disease, and education as the primary weapon to fight it. As will be seen later, Nepali policy planners, informed by this Western applied anthropology perspective, made “awareness-building” the major focus in Nepal’s first prevention strategies and programs. Since lack of awareness is reasoned to be the primary factor contributing to the spread of disease, and education is viewed as the primary weapon to fight the spread of disease, resultant prevention programs developed from this theoretical paradigm tend to give primacy to “awareness-building.” For instance, one KAB study done in Nepal concluded that “the most effective strategy to reduce the spread of the epidemic in the short term and protect women is to raise the awareness amongst the men” (Smith 1996:i).
