Ecology of Tuberculosis in India (Global Perspectives on Health Geography) 3030640337, 9783030640330

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Global Perspectives on Health Geography

Bikramaditya K. Choudhary

Ecology of Tuberculosis in India

Global Perspectives on Health Geography Series Editor Valorie Crooks Department of Geography Simon Fraser University Burnaby, BC, Canada

Global Perspectives on Health Geography showcases cutting-edge health geography research that addresses pressing, contemporary aspects of the health-place interface. The bi-directional influence between health and place has been acknowledged for centuries, and understanding traditional and contemporary aspects of this connection is at the core of the discipline of health geography. Health geographers, for example, have: shown the complex ways in which places influence and directly impact our health; documented how and why we seek specific spaces to improve our wellbeing; and revealed how policies and practices across multiple scales affect health care delivery and receipt. The series publishes a comprehensive portfolio of monographs and edited volumes that document the latest research in this important discipline. Proposals are accepted across a broad and ever-developing swath of topics as diverse as the discipline of health geography itself, including transnational health mobilities, experiential accounts of health and wellbeing, global-local health policies and practices, mHealth, environmental health (in)equity, theoretical approaches, and emerging spatial technologies as they relate to health and health services. Volumes in this series draw forth new methods, ways of thinking, and approaches to examining spatial and place-based aspects of health and health care across scales. They also weave together connections between health geography and other health and social science disciplines, and in doing so highlight the importance of spatial thinking. Dr. Valorie Crooks (Simon Fraser University, [email protected]) is the Series Editor of Global Perspectives on Health Geography. An author/editor questionnaire and book proposal form can be obtained from Publishing Editor Zachary Romano ([email protected]). More information about this series at http://www.springer.com/series/15801

Bikramaditya K. Choudhary

Ecology of Tuberculosis in India

Bikramaditya K. Choudhary Centre for the Study of Regional Development Jawaharlal Nehru University New Delhi, Delhi, India

ISSN 2522-8005     ISSN 2522-8013 (electronic) Global Perspectives on Health Geography ISBN 978-3-030-64033-0    ISBN 978-3-030-64034-7 (eBook) https://doi.org/10.1007/978-3-030-64034-7 © Springer Nature Switzerland AG 2021 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

Acknowledgements

Tuberculosis (TB), which is responsible for the greatest number of deaths globally, was identified as an infectious disease only in 1902 at the British Congress on Tuberculosis. Efforts to contain TB remain significantly compromised, even as the COVID-19 pandemic is still at large, and the future regarding elimination of TB by 2030 is more uncertain. The present book is an effort to elaborate and establish continuities and departures in spread of disease and also containment of disease. No work is an individual’s work as it is shaped consciously and tangentially by multiple social, political and economic realities in which an individual evolves. I am not an exception, as this work was only possible due to the generosity and support of large number of individuals and institutions I garnered. I wish to thank everyone who has contributed in my life being the way it is in positive and in negative ways, especially to those who have adversely contributed as these disapprovals have made my resolve stronger. I am thankful to the State Tuberculosis Officer, Delhi, for permitting me to conduct the primary survey at the six selected hospitals. The remarkable support by the DOTS providers at the six hospitals and the medical officers at these hospitals is praise worthy. I am highly obliged to the respondents who suppress their pain and uneasiness to answer the questions with a smile. My sincere thanks are due to officers and employees of different archives (National Archive, Delhi; State Archive, West Bengal; State Archive, Karnataka) and National Library, Kolkata; National Medical Library, Delhi; Libraries of National Tuberculosis Institute, Bangalore; Indian Public Health Association, Kolkata; Tuberculosis Association of India, Delhi; and National Institute of Communicable Diseases, Delhi. I extend my sincere and indispensable gratitude to Prof. Atiya Habeeb Kidwai, Prof. B.  S. Butola, Prof. P.  M. Kulkarni, Prof. Sachidanand Sinha, Prof. Deepak Kumar, Prof. Mohan Rao and Prof. Rohan for their critical appreciations and valuable enhancement in understanding the theoretical aspect of the theme. The encouragement and constructive criticism courteously extended by all the faculty colleagues at JNU are gratefully acknowledged. Some part of this work was published earlier, and I am grateful to the journal editors and publishers for allowing me to retain the right of the contents and also v

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allowing reuse of the published material in updated form. I specially thank Economic and Political Weekly and Journal of Health and Development for the following: 1. The prologue contains part of my paper published in the Economic and Political Weekly, as Choudhary, B. K. ‘Health, Illness and Disease: A Political Ecology Perspective’, Economic and Political Weekly 49(45): 60–68: 2014, used here with the kind permission of EPW and the publisher Sameeksha Trust. The original article is available via https://www.epw.in/journal/2014/45/special-­articles/ health-­illness-­and-­disease.html 2. Part of Chaps. 3 and 4 contain small part of my earlier published article, Choudhary, B.K. ‘Colonial Policies and Spread of Tuberculosis: An Enquiry in British India (1890–1940)’, Journal of Health and Development 4(1–4): 2008. The original article is available at https://www.researchgate.net/ publication/257612231_COLONIAL_POLICIES_AND_SPREAD_OF_ TUBERCULOSIS_An_Enquiry_in_British_India_1890-­1940 I am grateful to Riyochi Sasakawa, chairman of Nippon Foundation, for the recognition that I got for this research. The Springer Nature group deserves special mention as they found this work worth publishing. My special heartfelt thanks are due to Doris and Nitesh at Springer for completion of the publication in an excellent form. I put on record my special appreciation to Michael Leuchner who initiated the process of publication.

Prologue

Human history is the history of contestations. One of the key elements of the said contestation has been the incidence and prevalence of disease or infirmity and human efforts to contain it. Two forms of wars, the unseen and the visible, against pathogens of different kinds have been part of the human existence. The celebrated diagnostic and therapeutic measures have helped human kind contain some of these pathogens at specific times, though the war against the pathogen remains anything but conclusive. The successive cholera outbreaks, the Spanish flu, the Ebola, the SARS, and the latest COVID-19 are stark reminders of the on-going contestation between humans and pathogens. Its connotations and explanations have undergone layers of transformations based on the prevalent theoretical paradigms and dynamic shifts in social relations. Disease is often considered as wrath of nature or curse of the devil. Faith based religious explanations and miracle were provided as remedy from diseases in different cultural context. Such explanation based on miracle virtually evaporated when any serious challenges appeared especially pepidemic such as Plague in Europe. In the follwing decades, ‘Germ Theory of Disease’ got established thanks to the successful works of Louis Pasteur and Robert Koch, biomedical explanations and supremacy of bacteriological research. The discovery and development of immunization, sterilization and, later, antibiotics resulted in reduction of incidence of death to some extent (Buchanan 2000; Meade and Erickson 2000). However, the question of access to these interventions and the possibility of their combination failing with the emergence of new infectious diseases or ineffectiveness of antibiotics due to growing resistance keep the challenge of diseases, especially of the infectious disease, a relevant issue to be discussed by scholars in different disciplines. Geographers have been part of studying disease, and their contributions have been considered relevant, since the preparation of the Cholera Map of London by John Snow. In the early 1990s, Barrett (1993) wrote a paper celebrating the anniversary of medical geography and noted Finke’s book An Attempt at a General Medical-Practical Geography. The role of geography as a branch contributing in the understanding of disease pattern, especially contagious diseases, has come back to the fore with the mapping of COVID-19, at different scales, and identification of locations, hot spots and zones requiring special attention. The vii

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association of ecological factors with that of the prevalence and incidence of disease has been studied in one form or another like ecology, epidemiology, spatial epidemiology, social epidemiology and so on. One of the key issues in the debate related to associating factors remains whether ecology has a role to play. Ecology, while not taken as mere biological construct, also includes social, economic and cultural aspects, and questions like whether economy and polity shape the ecology become important. The nature of polity, meaning the nature of the state, becomes an important cornerstone, as the colonial state behaved in a different way compared to the welfare state or authoritarian state when it came to dealing with episodes of epidemics. It is interesting to note here that which disease got declared as contagious and which one, despite being contagious, did not get such containment measures also got defined by the nature of metropolitan states, which ruled colonies during nineteenth and twentieth centuries. That brings us to another set of questions like whether disease is caused by a vector or host, whether increase in life expectancy and reduced death rate is the outcome of ‘medical victories’ or the outcome of changes in the levels of food and nutrition, and whether solutions lie in social epidemiology or investment in biomedical advancements, and so on. Disease or infirmity, which was earlier considered as an act of God or some kind of vengeance, got associated with space-specific characteristics. Good environmental conditions, which were defined as sufficient amount of water, adequate hours of sunshine and so on, were considered a precondition for good health. The understanding of good environment varies across different cultures, so does the definition and explanation related to disease in different regions of the world. With colonization, Western populations got exposed to varying climatic and ecological conditions including diseases, which were not so common in Europe. That also meant study of geography and mapping of resources in these new territories to control the resources for appropriation and also contain diseases for appreciation. Western medicine became a new tool of the empire (Harrison 1998 Arnold 1993), which was also used to gain legitimacy for the process colonization. Opening up of schools of tropical medicine in different countries established scientific supremacy of the empire and also brought some kind of understanding about tropical diseases like cholera, malaria and so on. Tuberculosis was never taken as seriously as cholera or malaria by the British Empire in India even though it was a disease that was prevalent in Europe, and in a way, rate of diffusion at least in some regions of India was accelerated by the activities of the British Empire. Biomedical tradition of medicine that gave supremacy to Western medicine was largely based on the germ theory of disease. The work of Ronald Ross on malaria was focussed on transmission of the disease and brought the ecological conditions to the fore to understand the nature and pattern of disease prevalence, that is, regions where could there be more or less mosquitoes of a particular kind. The work of Trushen (1977) in Tanzania added a factor: the political decisions responsible for change in the economic map of a country and also possible exposure and susceptibility of an individual to a disease. Role of the environment in the treatment of tuberculosis was considered paramount and was the reason for establishment of

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sanatoriums in remote mountains with cool climate and pine trees. In these circumstances, the study of immediate environment of the individual and of epidemiology became an integral part of health- and disease-related studies. It became clearer that exposure to pathogens, while necessary, is not sufficient to cause disease. Writings on different diseases discussed host and the nature of host, which can now be understood as immunity. The growth or decline of pathogens depends on environmental conditions including the quality of life of the population. The study of the triad of ‘agent-host-environment’ gradually became more comprehensive and disease came to be understood as a consequence of the interactions between the pathogens, the host, and the environment. It is this conception of disease that legitimizes the geographer’s claim that ‘ecology of disease’ is a branch of geography, though disease ecology has been considered a branch of ecology and not of geography (Barrett 1986). Geographers study ecology as human–environment relationship and the dynamic changes that humans are capable of bringing in their interaction with the environmental constituents. Ecology, on the other hand, focuses on generalization of the larger relations between different types of plant, animals and other living and non-living entities. Disease is better explained on the basis of dynamic relations amongst multiple factors including social, economic and political factors, which shape the environmental conditions and access to the environment itself (Choudhary 2013). Introduction of the concept of ecology in the study of health and disease has brought multiple connotations. The conception of epidemiology, social epidemiology and political ecology of disease can be specifically listed amongst them. Each one of these conceptions has also gone under change over time in the context of medicine and disease. J. May (1953) was amongst the first who argued for inclusion of the role of the environment in scientific study of disease, though Hippocrates way back in the fourth century BCE tried to explain the association between various factors of the environment, like site, situation, direction of sunshine, and wind, and the occurrence of disease (Lilienfeld 1976). Advancement in the field of diagnostics and therapeutics intervened in the health condition of populations. The oft-spoken ‘first revolution’ came as a change in determining the cause of disease, that is, from environment to agent (Buchanan 2000). Descartes’ work in mechanics, which led to the foundation of quantitative and geometric description of human beings, laid the foundation of clinical perception of disease. Human beings were considered as machines and illness as sang, which is inevitable and can be corrected by application of the ‘magic bullet’. However, the ‘victories’ in the field of diagnostics and introduction of vaccination also had tangential outcome in the form of making the social and cultural ecology tradition unimportant amidst growing medicalization. Only physicians were considered valuable as they could diagnose the disease, identify the cause and prescribe a treatment. Modern medicine had the ‘magic bullet’ in the form of drugs that could be shot into the body to kill or control all health disorders (Dubos 1959). Diseases were seen as natural (biological), resulting from a single key mechanism that dominated all others (Thomas 1977, 1988). Specific and distinguishable features of every disease were considered as universal to human species. However, sooner than later, the complete neglect of ecology was halted, as

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different regions of the world witnessed outbreak of epidemics at varying intensities at regular intervals. Such outbreaks encourage epidemiological studies, and estimates in different populations were made to understand the extent of disease prevalence, allowing study of associated factors including ecological conditions as they, to some extent, determined thriving of pathogens or the reverse. Health and medicine under extreme medicalization had focus on disease and not on the possibility of ensuring positive health or community medicine or social medicine. Moreover, scholars like Dubos 1959; Doyal 1979; Illich 1976; McKinlay 1984; MeKeown 1976; and so on argued against excessive medicalization and argued that nutrition and improved sanitation is as important as diagnostic or therapeutic measures in keeping a population healthy. They argued that the decline in deaths and infectious diseases should be attributed to rising standards of living of people rather than the distribution of vaccines and antibodies. McKeown (1976), while studying health conditions in Europe in the eighteenth and nineteenth centuries, argued that the enormous increase in population and dramatic improvement in health that humans have experienced over the past two centuries owe more to the changes in broad economic and social conditions than to specific medical advances or public health initiatives. Epidemiology and social epidemiology brought back the relevance of ecological concepts and use these while estimating numbers of infected persons, especially in case of ‘outbreaks’ of contagious disease. Epidemiologists argue that study of disease must be concerned with knowledge of and application to social, environmental and biological factors of the population (Pearce 1999), because they determine an individual’s susceptibility to a particular disease. Attempts were made to draw an association between social characteristics and disease ecology. The basis of analysis nevertheless remained the ‘controlled’ and ‘uncontrolled’ experiments and techniques that could be accepted for generalization, commonly known as RCT (Randomized Control Trial). Quantification was found to be insufficient to analyse dynamic relationship between social characteristics, disease incidence and health status. To address this problem, controlled and case-controlled studies were done. Epidemiological studies became an inductive science, giving considerable importance to methodology, rather than capturing the existing dynamic reality. Marxist scholars introduced the question of access and structural inequality in the study of disease and health. Diseases of specific geographies and diseases of neglected regions gained attention. The introduction of political economy brought another change, and role of the state and society in ensuring health and leaving certain populations suffering from diseases started getting addressed. Marmot and Allen (2014) highlighted the overwhelming impact of social and economic factors, including the material, social, political and cultural conditions which shape lives and behaviour of people and are also known as social determinants of health. The Marxist political economy approach considered disease as an outcome of the larger economic system. The economic system is inherently exploitative and is based on production relations and access to resources. Classically, it was considered a dualistic framework of exploiters and exploited. The neoliberal economic regime has made the dualistic model complex as workers are more intensely competing with

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other workers than with the entrepreneurs. Entrepreneurs appointed managers to deal and bargain with workers, and there is hardly a conflict between workers and entrepreneurs. These managers, while working for the entrepreneurs, also claim to be workers and at times get exploited. Access to health across the globe through insurance has brought another dimension in the political economy of health as the collective risk and withdrawal of the state in ensuring health to the population. The health profile of a population depends on many factors and is a combination of existing environmental risks (physical, biological and social), the proportion of the population facing these different risks and the socio-cultural-demographic profile of the region. The existing socio-political conditions, diverse social relations and the nature of particular state determine all these conditions. Accessibility of individual and group is also based on the nature of employment, available social security schemes, vulnerability, knowledge about risk and threat. The relative poverty and inadequate access to basic services and opportunities are some of the fundamental reasons for the existing pattern of health in developing countries. Larger economic conditions, which determine level of nutrition, immunization, access and individual immunity, ultimately affect the morbidity pattern. The availability and accessibility of good environment is not only an ecological factor but is conditioned by political decisions, which are taken on the basis of economic priority. For example, in India, in the early 1980s, the production curve of wheat reached a plateau in the Western states of Punjab and Haryana. Paddy, which is a rich water plant, was introduced there, and now the entire region is a black zone, as ground water level has gone up to 200 meters. This also means that these regions, which are dry regions of the country and did not have incidence of malaria, are now affected with disease. To understand such changing geography, we need to employ ‘political ecology approach’ rather ‘human ecology approach’. Political ecology is a relatively new approach. While employing it in the study of health and disease, it is rooted in political economy and cultural studies. It tries to critically understand the relationship between society and the natural world. Political ecology uses ecological analysis with its broader vision of bioenvironmental relationship. The environment ranges from the very large cultural unit, like epidemiology of disease in urban settings, through intensely political entity (resource endowment) to fairly significant natural environment, like agro-ecological settings. Health and disease study under political ecology approach focuses on different aspects of society. Prior to seeing its relationship with the natural environment and disease, political ecologists investigate aspects of human relations within the society and also the factors including power structure that shape existing and changing human relationships in a particular society. There is significant amount of debate on the nature of the natural world, as scholars argue that it is important to examine how natural is the ‘natural world’. Over three centuries, economic system has transformed with increasing mechanization and introduction of robots and artificial intelligence. These transformations have significant impact on the nature of health (physical with continuous changes in economy, polity and spatial relations). After the World War II, brute force got replaced with hegemonic and capillary forces; even in international relations, terms like ‘soft power’ prevailed for most of the

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second half of the twentieth century. Increasing profits from industries located in non-democratic states encouraged the global corporate and transnational capital to covertly encourage authoritarian states, and once again coercive states got global acceptance as business channels flowed uninterrupted through these states. The health professional needs to take into account the power of global pharmaceutical companies, corporates involved in production and promotion of food items and supplements along with the power of states and local power blocks. Under the current capitalist system, various artefacts of the socio-cultural setting, including health and education, are offered by the modern liberal democratic state. With the rise of neoliberalism, health and education have become commodities and thus are made amenable to the rule of exchange and open for profit generation and profit maximization. Introduction of concepts like ‘health tourism’ in developing countries like India, which lacks even basic infrastructure for population health, can be taken as examples. However, as health becomes one of the important commodities, global business rules and international relations are beginning to get shaped on the basis of use and production of medical equipment and life-saving drugs. There has been significant gap amongst studies and researches under different traditions and in various disciplines. The two major traditions of medical geography viz. disease ecology and health services research have tended to be mutually exclusive streams of work. During late 1960s and the 1970s, the political economy approach was introduced to study health and disease and the prime focus was on inequalities in the healthcare delivery system. Studies of disease ecology and causes, which could explain prevalence of disease, remain aloof from these developments except in a few cases like Turshen (1977) and Meade (1977), who analysed the role of the state in the prevalence of certain diseases in Africa. Turshen (1977) studied emergence of new patterns of malaria and linked it the growing plantation cultivation in Tanzania. This distinction continued and gaps widened between the researches related to the prevalence of disease (a major area of study under disease ecology tradition) and the researches related to distribution of health services (a major study area approached through political economy). Scholars like Mayer (1982, 2000), Johns and Moon (1987) identified the gap. Bentham and colleagues (1991) focussed on blurring of dichotomy as important research problems straddle the boundaries. Therefore, it is important to develop a framework which incorporates political and economic interests into the ecological framework and human– environment interaction, which itself is political at least in the twenty-first century. The present study has tried to bridge these gaps and has attempted to intertwine the two traditions so that the parameters of ‘political ecology of disease’ can be identified with greater clarification. Of late, healthcare is envisaged as a system that can be understood as an arrangement of parts and their interconnection that are brought together for a purpose. With increasing debate about the concerns of people’s health, it became pertinent to develop health systems having many parts at different scales. In addition to patients, families and communities, health providers, health service organizations, Ministries of Health, pharmaceutical companies, financial institutions and policy bodies play important roles in ensuring the type of system that evolves and sustains to care for the need of the people. However, factors like poverty, education and infrastructure,

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though lying outside the defined health system, have significant impact on the health of individuals and communities along with the broader socio-political environment. This makes health system an open system that is influenced by multiple factors at different levels. It is important to note that these conditions and behaviours which shape the healthscape of the region varies and therefore we find more than one type of disease ecology. Spatial analysis based on factors that are unevenly distributed becomes therefore pertinent and relevant, especially for countries that significantly have more than one ecological region, such as India. Geography as a science of distribution has tried to study prevalence and incidence of a particular disease and combination of diseases and causal factors of such prevalence over space (May 1952; Mead and Erickson 2000). The present book, Ecology of Tuberculosis, is an attempt to address some of these aspects related to tuberculosis. Geographies of health remains an important aspect, as it assigns due emphasis to the study of place, space and dynamic relation between factors shaping space, place and health, including ecological aspects. The spatial distribution of mortality and morbidity from tuberculosis is analysed over periods of time using multiple sources of data, including archival data and also National Family and Health Survey (NFHS) data. Using archival records and letters and reports from the colonial period, the work maps the diffusion of the disease through time and space and also tries to discuss the associated factors and political decisions which changed the ecology of a particular region, which accelerated the rate of diffusion of disease in different parts of India. Based on the primary survey, I have analysed healthcare behaviour and perception of those suffering from the tuberculosis along with the spatiality of infrastructure and finance. A chapter of the book is focussed on the ‘planning strategies’ employed to contain tuberculosis during the colonial period as well as in independent India. Further, this book is an attempt to add a leaf in the existing tree, and for this, it embraces the population-health framework. In this book, while dealing with the perception of patients about the disease, questions related to the interaction of individual-level biological and behavioural variables with social and environmental factors are incorporated in a single framework (Elliott 1999). In summary, the book aims to combine the ecological approach to disease and political economy approach to health and medicine in one framework. This study uses the political ecology approach that expands ecological concepts to include cultural and political dimensions within single analysis of ecosystem that are significantly but not entirely socially constructed. Acknowledgements  This is an updated version of the arguments already presented in Choudhary, B. K. Health, Illness and Disease: A Political Ecology Perspective’, Economic and Political Weekly 49(45): 60–68: 2014, used here with the kind permission of EPW and the publisher Sameeksha Trust. The original article is available via https://www.epw.in/journal/2014/45/specialarticles/health-illness-and-disease.html.

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References Barrett, F. A. (1986). Medical geography: Concept and definition. In M. Pacione (Ed.), Medical geography: Progress and prospect (pp. 1–35). New Hampshire: Croom Helm. Barrett, F.  A. (1993). A medical geography anniversary. Social Science and Medicine, 37(6), 701–710. Cantor, R. C. (1978). And a time to live: Towards emotional well-being during the crisis of Cancer. New York: Harper and Row. Centre for Disease Control and Prevention (CDC). (2017). Burden of Tuberculosis in the United States. https://www.cdc.gov/features/burden-­tb-­us/index.html. Accessed on 20 Dec 2018. Daniel, T. M. (2006). The history of tuberculosis. Respiratory Medicine, 100, 1862–1870. Elliott, S. J. (1999). And the question shall determine the method. The Professional Geographer, 52(2), 240–243. File, B.  L. (1994). The conceptualization of meaning in illness. Social Science and Medicine, 38(2), 309–316. Gillum, N, Ryan, S., & Selkow, M. (2008). Tuberculosis. In The history of disease. Scientific and technical writing (pp. 70–78). Massachusetts Academy of Math and Science Hayman, J. (1984). Mycobacterium ulcerans: An infection from Jurassic time? Lancet, 2, 1015–1021. Howe, G. M. (1968). National Atlas of disease mortality in United Kingdom. London: Nelson. Ilich, I. (1976). Medical nemesis. New York: Pantheon Books. Knowles, J. H. (1977). The responsibility of the individual. Deadalus, 106(1), 57–80. Lilienfeld, A. M. (1976). Foundations of epidemiology. New York: OUP. Marmot, M., & Allen, J.  J. (2014). Social determinants of health equity. American Journal of Public Health, 104(S4), 517–519. McKeown, T. (1979). The role of medicine: Dream, mirage or nemesis. Oxford: Blackwell. Meade, M. S., & Earickson, R. J. (2000). Medical geography. New York: The Guilford Press. Navarro, V. (1982). Imperialism, health and medicine. London: Pluto Press. Simonton, C. O., et al. (1978). Getting well again. New York: Bantam Books. United Nations. (2018). Global health and foreign policy- Agenda item 129. http://www.stoptb. org/webadmin/cms/docs/Political-­Declaraion-­on-­the-­Fight-­against-­Tuberculosis.pdf. WHO. (2007). Tuberculosis fact sheet. http://ww.who.int/mediacentre/factsheet/fs104/eng.

Contents

1 The Burden of Tuberculosis��������������������������������������������������������������������    1 2 Spatiality of Tuberculosis������������������������������������������������������������������������   25 3 Changing Geographies of Tuberculosis�������������������������������������������������   45 4 Containing Tuberculosis During Colonial Period ��������������������������������   71 5 Combating Tuberculosis in Independent India ������������������������������������   91 6 Patients, Professionals and Narratives��������������������������������������������������  113 7 Tuberculosis: A Medical Mirage������������������������������������������������������������  143 Index������������������������������������������������������������������������������������������������������������������  159

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Chapter 1

The Burden of Tuberculosis

Tuberculosis has been known to affect fish, reptiles, birds and mammals, though it usually remained rare. The sporadic infections did not present menace to the health of the heard. Humans being like other animals occasionally developed the disease; however, there was no place for the widespread debilitated consumptive, and humans did not leave the infected ones to die (Walter 1964). As of today, tuberculosis, an infectious disease, is responsible for the greatest number of untimely deaths especially in the developing countries, which lack the resources for adequate drug treatment. The scarcity theory though has its own limitation, when a global list of richest persons finds individuals from the same countries, which also has the largest number of deaths from tuberculosis. The burden of disease in an epidemiological sense refers to the nature and magnitude of the public health problem posed by disease and injuries, their determinants and associated risk factors. Communicable diseases usually account for about 50% of DALYs compared to non-communicable diseases and injuries. Tuberculosis continues to be one of the important communicable diseases, though its severity in terms of prevalence and mortality has gone down. Mortality of tuberculosis has fallen from 800 per 100,000 people in 1920s, to 462 per 100,000 in the mid-1950s, to 40–80 during early 2000, to 19 per 100,000 in 2017 (Gupte et al. 2001; DGHS 2018). The silent nature of the disease attracted little attention towards it despite its severity. One significant reason for the little attention is the decreased mortality from tuberculosis in the Mother Country of the Empire by the end of the nineteenth century. Owing to surplus wealth especially grain procured from colonies coupled with public health initiatives, a substantial reduction in mortality from tuberculosis was noticed in Great Britain. While writing about peculiarities of tuberculosis problem in India, the then director general, Indian Medical Service, Sir Cuthbert Allan Sprawson (1938) wrote: In Great Britain and in other parts where public health procedures have been well established for some time and where the intelligent co-operation of general population is readily obtained, the best lines of action for a campaign against tuberculosis are now generally accepted, but this is not always the case in less advanced countries and is certainly not the case in India. Perhaps, because of this, we see sometimes public health workers from India, © Springer Nature Switzerland AG 2021 B. K. Choudhary, Ecology of Tuberculosis in India, Global Perspectives on Health Geography, https://doi.org/10.1007/978-3-030-64034-7_1

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1  The Burden of Tuberculosis after an intensive study of anti-tuberculosis measures elsewhere, return to their own country and advocate strongly the direct introduction in India of those measures they have successfully applied abroad.

Western medicine in India is generally seen as an imperial artefact with an alien and state-oriented system of medical thoughts and practices (Arnold 1993; Pati and Harrison 2001). Coercion 2001 which otherwise was the principal of implementation of imperial order remains absent in medical intervention especially in terms of public health measures and ensuring its compliance. On the issue of public health, there are varied opinions about British interventions in colonial countries. Some of the scholars claim that public health flourished only under British agency in these colonies; also these communities practised unscientific practices including witchcraft to get cured. The critical literature suggests that successive British administrations sought merely to protect the health of the colonial enclaves and had least concerns for the native population in these countries (Arnold 1985; Harrison and Pati 2009). Rightly, scholars have expressed their scepticism on the very conception of the term public health in India during the colonial period and argued the same to be taken as ‘state medicine’. It is in this context Bala’s argument that ‘the readiness with which the British empire is blamed for the lack of appeal in Indian medicine is because for the first time the medical differences between the two became obvious’ become important. The understanding of disease in traditional medicine was different than that of the understanding based on ‘western medicine’. Tuberculosis in different parts of the world has been considered consumptive but had varied explanations across cultures over time. Generally, the incidence and prevalence of tuberculosis are associated with (a) the presence of tubercle bacillus, (b) the existing climatic conditions, and (c) prevailing precarious living conditions of the certain section of the population, (d) stage of detection, (e) access to medicines and so on. Though it existed since antiquity as evidenced from the mummies in ancient Egypt to Peruvian mummies of pre-Columbian time, the cause of the disease remained elusive. In the next sections of this chapter, I will elaborate upon the diverse conceptions and associated factors of tuberculosis in India.

Tuberculosis as Phitsis/Consumption/Yakshma Robert Koch got tuberculosis established as a disease associated with infection by Mycobacterium tuberculosis in which modules (tubercles) occur in the tissues of various parts of the body; the disease has a long history. The earliest record of tuberculosis can be found in a book on China by Hall where he states that ‘there are descriptions of lung cough and lung fever, which was probably tuberculosis’ or ‘lao-ping’ which dates back to 2698 B.C. (Hall quoted in Meachen 1936). Muthu (1922) suggests that the disease has been reported from Babylonia where traces of it had been found in the remains and the bones of Egyptian mummies. Hippocrates, the ancient Greek physician, made many clinical observations related to what is

Tuberculosis as Phitsis/Consumption/Yakshma

3

now known as pulmonary tuberculosis. Hippocrates called attention towards the then called ‘consumptive type’ i.e. ‘phthisis’ which involves diminution or shrinking of the body following incurable ulcers of the lungs which is accompanied by a small fever. The term ‘phthisis’ continued to be used till the third decade of the twentieth century in medical literature had its origin in the Greek language. In the Greek language, it meant wasting, which also is the meaning of the term used in Hindi (Kshaya). The derivation of the word phthisis is from

  to consume, but some think



  to spit.

According to Hippocrates, tuberculosis is caused by a small growth in the lungs. This primitive pathology held true until the seventeenth century when Franciscus Sylvius of Leyden1 (1614–1672) used the term ‘tubercle’ and stated that tubercle was often seen in the lungs in the case of consumption. However, it was not differentiated from various forms of ulcers. The Indian tradition of medicine and disease dates tuberculosis to the Vedic literature, probably the first written evidence available. In the Rig Veda, there is a hymn on the cure of tuberculosis, whilst Susruta in an ancient work on traditional medicine, the Ayur Veda, speaks in detail of the difficulty of curing the disease and even blames physicians for not treating it early. Tuberculosis was known as Raj Yakshma and found its association with the waning phase of because the Moon (Walter 1964). Moon2 is considered as the ‘king’ of the star, and the disease gets depicted deadly as it did not even spare the celestial supreme. Another explanation to call it Raj Yakshma was that if somebody got infected with tuberculosis, then it required a huge amount of dietary measure and rest that only a king could afford since Susruta also advised walking, horse or carriage exercises and a good diet. The household name for tuberculosis has ranged from Raj Yakshma to Raj Rog; the nomenclature ‘Raj Rog’ can be seen being derived from the notion that only a ‘king’ can afford to have this disease treated as there is a rich dietary requirement for the cure. The writings of Charaka and Susruta 1  Franciscus Sylvius of Leyden (1614–1672) was the first to use the term tubercle (Meachen 1936). Throughout Europe, in the seventeenth and early eighteenth century, poets described the movement of tuberculous patients to a milder climate. There are heart-breaking stories about the death of various literary figures one of which quoted by Dubos was of Keats and Shelley who symbolize the romantic and consumptive youths of the nineteenth century. Keats wrote to Godwin about his illness in a letter as “My health has been materially worse … it is to my advantage that this malady is slow in nature and if one is sufficiently alive to its advances, is susceptible of cure from a warm climate.” See, for details, Dubos, R. (Dubos and Dubos 1952). 2  Neelakantan V. (Neelakantan 2018) wrote about the classical conception of TB in India and said that the Charaka Samhita (a Sanskrit treatise on Ayurveda or traditional Indian medicine) mentions that Chandra (the moon god of the Hindu pantheon) suffered from consumption as a result of a curse pronounced by his father-in-law Daksha on account of excessive attachment to his wife Rohini. Ayurvedic surgeon Susruta (sixth century BCE) noted that tuberculosis was accompanied by several complications, notably chronic cough, pain in the chest and throat, fever, pain in the joints, difficulty swallowing, spitting of blood and phlegm, loss of appetite, alteration of voice and drooping of shoulders.

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1  The Burden of Tuberculosis

provided details about it, and they called it ‘sosha’, the conception parallel to the Hippocratic tradition of identifying tuberculosis as ‘consumptive type’. Tuberculosis remained a phenomenal disease in large cities of India during the fifteenth and sixteenth centuries. Hakims in Lucknow and Delhi called it ‘sil’. The word sil used in North India is an Arabic one and means to unsheathe, to unchain (metaphorically to unsheathe from life). The conception of sil continued in the twentieth century, and British physicians too referred to it as a word that was being used to describe the disease in vernacular. In the year 1932, Cummins pointed out in one of his reports that, the very fact that the name applied to it throughout North India ‘Sil’ is the same as that used to describe it is such distant countries as Egypt- where the Arabic word Sil to unsheathe, to unchain, suggest the formidable character of the consumption refer to – implies that the knowledge of tuberculosis was as widely spread as the lore of oriental medicine in the past.

The popular term for tuberculosis was ‘Tap-i-diq’ because fever was one of the primary symptoms of the disease. In vernacular press, the disease often gets reported as ‘Tap-i-diq’ up to the mid-twentieth century. The Greek conception of wasting due to disease, as it has been named phthisis for the advanced cases of pulmonary tuberculosis, goes along with the Indian understanding of the disease as Kshaya Rog (wasting disease) by the Raj Vaidyas and Kavirajs. The word commonly used during the twentieth century was ‘consumption’ because it consumes the body. The weight loss of the patients suffering from tuberculosis has been the reason for this nomenclature, and India named it Kshaya Rog. It is primarily due to this richness in writings that Meachen, a consulting physician for tuberculosis at the Southend Municipal Hospital and also the tuberculosis officer at Essex in 1936, quoted Sir William Osler, ‘the student who dates his knowledge of tuberculosis from Koch may have a very correct but a very incomplete appreciation of the subject’ (Osler Quoted in Meachen 1936). The caution by Osler was against ignoring the long history of the disease and its association with humans across continents. The articulations of the nature of the disease were rightly found important, and the nature of the disease which reduced the human body in a literal sense (weight loss) has to be taken into account. Noteworthy to note here is that the disease and its nature and possible treatment (if good dietary intake can be taken as a substitute for nutrition) was known to the then available professionals across different regions of the world, at least in Europe and Asia.

Bacillus as a Cause of Tuberculosis Tuberculosis is now established as a disease associated with infection by M. tuberculosis in which modules (tubercles) occur in the tissues of various parts of the body. The disease has a long history, going back to the earliest available evidence. With the identification of M. tuberculosis, Robert Koch not only established cause of the deadly disease but also revolutionized the fight against tuberculosis. His first

Bacillus as a Cause of Tuberculosis

5

contribution was his announcement at a meeting of ‘Berlin Physiological Society’ at Germany where he claimed to establish the cause of tuberculosis, i.e. the discovery of tubercle bacillus though; he was not the first to talk about the tubercle. The second phenomenon was his announcement in 1890, when he claimed to produce a substance first called ‘lymph’ and afterwards ‘tuberculin’, which was expected to provide a ‘scientific cure of the disease’ (Meachen 1936). There is intense debate on the validity of Koch’s claim about the discovery of tubercle bacilli for the first time. Dubos and Dubos (1952) in their famous book ‘The White Plague’ question the claim and point out that it was way back in 1722 in London when Benjamin Marten suggested that a minute living creature is behind the symptoms associated with tuberculosis. The book quoted Marten, …promote some other peculiar, latent or essential cause which I suppose to be joined with them. the original and essential cause then which some content themselves to call a vicious Disposition of the Juices, others a Salt Acrimony, other a strange Ferment, others a Malignant Humour, may possibly be some certain species of Animalculae or wonderfully minute living creatures that by their peculiar shape or disagreeable parts are inimicable to our Nature; but, however, capable of subsisting in our Juices and Vessels (Dubos and Dubos 1952:94).

Marten’s claim did not get currency because of the fact that eighteenth-century England was terribly unreceptive of the contagious theory of phthisis. His book was not ignored by contemporary physicians. His theory of contagion was rather dubbed as unsound and was forgotten. The same could only be rediscovered in 1911. It was again Villemin who tried to establish the germ theory of disease and performed different tests in various laboratories. His theory was tested by a group of physicians in London, and they also did not dismiss the theory. Koch could convince the world community about the nature of the disease, and he has been considered as a demigod across the world. Dubos and Dubos (1952) said that Villemin suffered much in his pride as his work was contemptuously ignored. He further stated: He (Villemin) becomes the true discoverer who establishes the truth: and the sign of the truth is the general acceptance…in science the credit goes to the man who convinces the world, not to the man to whom the idea first occurred.

Despite the establishment of the germ theory of disease for tuberculosis and the ‘real cause’, the physicians remained doubtful about the future of the disease and its cure. It was only after 1944, when streptomycin was produced and chemotherapy formally started, that scientific cure for tuberculosis was said to be available. In 1936, Meachen quoted Sir James Kingston Fowler who remarked that no one can tell ‘when the struggle against tuberculosis began or when it will end’. Meachen (1936) stated, …it is both helpful and advisable in order to obtain a true perspective of things as they are to look back to first groupings after truth to pick up the little bits of knowledge here and there and then piece them together until some sort of a picture is visible which ultimately becomes clearer, though never perfectly transparent.

Even in the mid-twentieth century, professionals agreed that tuberculosis remained the greatest destroyer of mankind in the prime of life in spite of all

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1  The Burden of Tuberculosis

advances in diagnosis and treatment (Houghton et al. 1953). Tuberculosis that was referred to as ‘captain of these men of death’ in the seventeenth century and as ‘white plague’ in the nineteenth century began to decline in many countries mainly in the west from the mid to the late 1800s. Pearson (1912) while discussing tuberculosis referred to Dr. Bullock and Greenwood of the Royal Society of Medicine, who argued in favour of the constitutional factors. Pearson (1912) argued that professionals of the early last century emphasized on ‘soil’ (environment) and ‘germ’ meant nothing to them, possibly because they did not know much about the germs. The focus on the environment meant the explanations were sought from the immediate and distinct correlates.

Climate and Tuberculosis The association of disease with ecology in general and with climate in particular is not new either for the physicians or for the general readers. A deep association of the disease to a particular climate or at least increased or normal susceptibility to the disease can be traced back to the celebrated work of Hippocrates. Even the well-­ known explanation of tuberculosis throughout Europe in the Romantic age3 and the establishment of sanatoriums recognized the effect of climate on the disease.4 However, the first report of 1899 on tuberculosis in India did not highlight the importance of the association of climate with the disease even while discussing the aetiology of disease. It was in 1903 when probably for the first time in the official records, climatic conditions, especially amount and duration of rainfall, were considered as indirect factors contributing to the spread of the disease. In India, the celebrated report of Lankaster published in 1916 initiated a debate across the country among different state governments and the Government of India (GOI). Lankaster based his observations on a three-year study in different parts of the country and considered climate as an important factor for the spread and

3  Throughout Europe in the seventeenth and early eighteenth century, poets described the movement of tuberculous patients to a milder climate. There are heart-breaking stories about the death of various literary figures one such quoted by Dubos was of Keats and Shelley who symbolize the romantic and consumptive youths of the nineteenth century. Keats wrote to Godwin about his illness in a letter as “My health has been materially worse … it is to my advantage that this malady is slow in nature and if one is sufficiently alive to its advances, is susceptible of cure from a warm climate.” Dubos, R. (Dubos and Dubos 1952), quoted in Choudhary 2008. 4  Climate was considered the principal criteria for determining the site to establish sanatorium. When there was a conflict about the climatic condition and army installation, the decision was taken in favour of retaining military installation. It is argued that a TB need to be away from the harsh climate and to recoup from the disease milder climate is needed. There are numerous incidences, examples and stories in the available literature right from the writings of the nineteenth century when sanatorium treatment was started. These stories can be seen appearing in the public health book like that of Dubos (Dubos and Dubos 1952) and also in the various reports submitted to the Government of India during the colonial period.

Climate and Tuberculosis

7

existence of the disease. The report has devoted one full chapter on the relationship between climate and tuberculosis. The ‘good climate’ for the treatment of tuberculosis has been identified first followed by a discussion of the climate where the prevalence rate is more. The report finds the plateaus of India like high tableland of Rajputana, Central India and Central Province and the Deccan and the Mysore plain with their low rainfall, low relative humidity, dry clear atmosphere and high mean temperature as more favourable regions for treatment. These regions also have a low prevalence rate. The climate of British Baluchistan, higher parts of Kashmir with Chitral and Gilgit, the hill country of Chota Nagpur, the highland of central Assam and Madras Presidency were also included in the category as favourable regions. Lankaster whose report was otherwise seminal included Assam in the climatic type characterized by low rainfall, low relative humidity and dry clear atmosphere. The categorization of Assam in such a climate type is far from true, and it remains a mystery what led Lankaster to such a categorization. Lankaster’s report further categorizes some regions as unfavourable for the treatment and favourable for the prevalence and spread of the disease, and his list includes lower Assam and the delta of Bengal, the whole of the eastern and western Indo-Gengatic plain including the whole of Punjab (excluding southwest corner), the North-West Frontier Province, Gujarat and the Malabar Coast. The rest of India was intermediate with respect to the conditions favouring the spread of disease or treatment of disease. Interestingly, some of the regions where the incidence rate was low were identified as most favourable for the treatment of the disease due to their location. Lankaster (1916) stated, …by separating Chitral, Gilgit and the higher hills together with some of the isolated districts in the Central Provinces and Chota Nagpur which are inhabited by aboriginal tribes, into a ‘most favourable’ group, in which the tubercular infection would seem not to have penetrated as yet to any very large extent; and at the other extreme by including in a ‘most unfavourable’ group Lower Bengal, the southern parts of Bihar, the United Province except the north-east corner, the Central Punjab and the Kathiawar and Malabar coast.

Climate was considered as the factor that determined the way of life5 of the common man and which favoured or hindered the spread of the disease. Lankaster highlighted that: Temperature exerts its influence far more by effecting customs, habits and habitations of the people than by any direct effect upon the disease. There can be little doubt that the greatest cause of the comparative freedom in Central and Southern India is that a warm and equable climate favours an open-air life and at least does not compel closed-up dwellings; while it is no less true that one outstanding reason of the great prevalence in the Punjab and the north is the general lack of ventilation since a more ‘closed-up’ life is supposed to be necessitated by the extreme cold of the winter and to a less extent by the fierce heat of summer.

However, Lankaster’s explanation for the prevalence of tuberculosis does not justify the incidence of the disease in two contrasting regions, viz., the high-altitude 5  Climate was held responsible for the customs and habits of the people like dressing sense, way of sleeping and keeping windows open or closed during night which is otherwise responsible to spread of disease in the region.

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1  The Burden of Tuberculosis

regions of Gilgit and other parts of the Himalayas have low incidence despite the cold climate, and the Malabar Coast and Kathiawar region which are coastal and desertic have the high incidence. Still, his observation on the incidence and prevalence of tuberculosis was of great value as immediately, after this report was submitted, the Government of India has asked the provincial governments to enquire at their level and report back to the surgeon general. The climatic explanation of prevalence and incidence did not continue for long, and the report submitted by different committees in subsequent years ignored climate as a factor. Though, in Mysore, when a committee was being constituted to look into the incidence of tuberculosis in the state, the climate did figure as a factor to be investigated. Dr. Chandra Shekhar in 1927 undertook survey tuberculosis to enquire of the conditions prevalent in the state and included ‘the climatic conditions of the localities which can be selected for carrying on different lines of treatment’.6 The report in Delhi and Mysore both can be considered similar in the way that both of these believed in the climate connection of tuberculosis. Tuberculosis was accepted as a widespread disease in India during the late nineteenth and early twentieth centuries. The initial reports show that Europeans in India were equally susceptible to the disease. In contemporary Europe, slandered treatment of tuberculosis was confinement in sanatoriums. This was the period when institutions to treat tuberculosis were started in India as well so the Europeans stationed in the colony should not feel insecure. Appropriate climate was the precondition for opening up of any sanatorium for tuberculous patients. At present, the debate on climate and its association to tuberculosis may seem irrelevant. But it was important during the first half of the twentieth century in India and was extensively debated. In one such reference, Walter (1964:445) argued, While sporadic cases probably used to occur under pastoral or agrarian conditions no serious spread of disease appears to have taken place amongst more modern primitive people until they established communication in the other world. This not only introduced infection but usually led also to certain fundamental altercation in the way of life of the people concerned. Thus as white man moved westwards to American Indians had to abandon their open-air existence and were confined to reservations, often in overcrowded and depressing circumstances which favoured the spread of tuberculosis.

The climate is understood not only in terms of distribution of rainfall and temperature but also as a totality of ecological conditions, where access to open air and sunlight got limited for certain sections of the population and the same was considered as the reason for growing cases of tuberculosis. In such conditions, ‘natural selection’ was considered as a natural process of elimination of susceptible in the early stage. However, the survival of a few also meant that disease survived.

 Medical/1927/No. 43/1–5/January 1928, State Archive of Karnataka, Bangalore.

6

Bovine as a Cause of Tuberculosis

9

Bovine as a Cause of Tuberculosis Bovine tuberculosis primarily is a chronic disease of cattle. It impacts productivity and also is considered a major public health threat (Srinivasan et  al. 2018). It is caused by bacteria known as M. bovis, which is closely related to the bacteria that cause tuberculosis in humans, i.e. M. tubercle. Tuberculosis finds its nomenclature from the nodules also known as ‘tubercle’ which form in the lymph nodes of affected animals. Certain similarities were noted between tuberculosis in human and the disease in the animal world. In Europe, a bovine organism is considered to have given considerable rise to certain disease including tuberculosis. In the first-ever report on tuberculosis in India in 1899, Crombie reported about the infrequency of bovine tuberculosis in India to the then government. He quoted the health officer of Calcutta, Dr. Simpon, saying that ‘my experience is that bovine tuberculosis in India is not common. It was very seldom met with at the slaughter-house in Calcutta, tuberculosis is not even mentioned as disease of cattle in tables of the reports of Civil Veterinary Department of India for 1897–1998.’ For the same year, A. Krishnasamiengar while writing on cattle diseases in Mysore did not mention about tuberculosis. Crombie (1899) wrote about J. Cockburn, who was a Zemindari officer while furnishing a list for cattle in Bengal in 1864 mentioned ‘sookmina or withering, in which animals dries and dies of exhaustion’, which could be tuberculosis. Klencke (1843) had established that cow’s mile could transmit tuberculosis he claimed to have produced. Crombie was of the opinion that bovine tuberculosis cannot be absent in India for the reason that cattle are kept in dark and dingy places and therefore it should be investigated further. This suggestion was for the reason that then known causes and association of tuberculosis and bovine were detrimental to the European compared to the native population for two specific reasons: the use of milk and use of meat. Crombie (1899) wrote, No native of India knowingly drinks a drop of unboiled milk. This custom of boiling milk probably originated in the necessity of doing so imposed by a climate in which milk will not keep even for a few hours without boiling. To Europeans, the taste of boiled milk, especially when boiled after the native fashion…is most unpleasant and they often drink and give their children raw, uncooked milk.

Non-consumption of beef by Hindus was considered another practice that lowers the possibility of transmission of tuberculosis from cattle to human. Lower consumption of beef in India due to religious belief was reported. It was also found that due to the absence of stall-fed beef, even Europeans did not prefer consuming beef in large cities. Indians mostly consumed goat meat which Crombie (1899) considered as ‘refractory to tuberculosis’. Olea-Popelka et al. (2014) estimated that about 10 per cent of total human tuberculosis cases in developing countries are caused by M. bovis. Studies have shown that about a quarter of all tuberculosis cases in children were caused by M. bovis prior to the adoption of mandatory pasteurization of milk in many countries, especially where raw milk as used (Roswurm and Raney 1973).

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1  The Burden of Tuberculosis

Urbanization and Industrialization as Cause of Tuberculosis Spread and prevalence of tuberculosis throughout the world have been uneven, and India is no exception to this. Economic factors and mobility of population often due to economic necessities have significantly influenced its spread and growth. Geography plays its part in determining the extent of spread and penetration of particular virus/bacteria. Spatial and environmental factors play significant role in the prevalence of tuberculosis especially in case of areas of relative isolation, often called ‘virgin land’. The Himalayan mountains in India in successive reports have strengthen this argument and also to some extent suggest that it is the mobility of people from these regions to the larger towns and cities, which has created the disease network. Walter (1964) found sedentary lifestyle especially large congregation of population in cramped spaces responsible for epidemic level of tuberculosis. He wrote that ‘in the cities of Egypt, of Mesopotamia, of Greece and Rome, of India and China and later of Europe and America, the development of tuberculosis was fostered by the complex of circumstances engendered by city growth’ (Walter 1964:448). Indian population had an estimated increase of about 64% between 1872 and 1911. Urban areas especially the large cities had relatively higher density. Cumins (1932) reported that higher density of towns like 465 persons per acre at Lahore and 563 persons in Cawnpore (now Kanpur) along with specific overcrowding in certain areas of these towns constitute one of the conditions, which ‘favour in every possible way the spread of tuberculosis’. Urbanization in India was fuelled due to industrialization, which attracted people from rural hinterland to large towns and cities like Kanpur and Calcutta. The migration of people from rural areas to urban centres, the place infected with bacilli, and reverse migration of these people created a conspicuous disease network and the disease spread to larger parts of the country. Once the people from the rural areas – the virgin land, got exposure to the tubercle bacillus they become more vulnerable. This aspect was considered by then physicians in the early twentieth century and beautifully highlighted in the report submitted to the Government of India in 1932. Cumins in the report wrote, …the effects of contact with a new industry on traditional life of an agricultural or pastoral community tend to be such as to emphasize the harmful aspect of poverty, to impose new standards and desire, to diminish simplicity and content and to produce the type of psychological background which favours misery and aggravates infective processes. (Choudhary 2008)

The process of diffusion of disease is equally affected and carried out by different means of transport and communication as the diffusion of any innovation. Human beings, unknowingly, acted as a carrier and an agent for the bacillus. The role of migration and return migration on such diffusion has been well established in different studies.7 Once the health of the migrant population in these large towns, 7  Choudhary, B. K. (Choudhary 2008). In the paper, author established how migration to large cities and towns create a disease network especially with return migration and the people back in village become vulnerable to the disease. For more details on disease diffusion, see Hagget.

Urbanization and Industrialization as Cause of Tuberculosis

11

which otherwise are considered places of the lonely crowd, deteriorated due to their exposure to the bacillus, they tend to return to their native villages. This return migration had two specific reasons: first, they expected better care in their village, and second, they wished to die peacefully at the villages instead of dying near roaring mills in the cities. This brought the bacillus to the villages where native villagers got infected in due course. Cumins (1932) while submitting his report to the then Government of India highlighted the study of Broughton and quoted that, When a man lived in a comparatively isolated community not only was his range of ideas limited by that community but his manners and habits were also limited. He did what his fathers and grandfathers had done for hundred years before him … … once a man becomes a citizen of a vast city, many of these conditions must be cast aside. He can scarcely escape contamination … …men from all parts converse with him and he wakens to the fact that his narrow range of ideas must be widened if he is to maintain himself successfully in his new environment. When such a man returns to his village spread new ideas … …unfamiliar germs are more fatal than new ideas and the tubercle bacillus is especially more potent in virgin soil.

Often, habitual and customary practices were referred to as the cause for the infection and its spread. Higher prevalence of tuberculosis was reported among women from different part of the country. The reason advanced for such situation was the ‘purdah system’; however, the infection seems to be transmitted to them from outside something like sexually transmitted diseases (STDs) in recent times, and the reasons often given were as unhygienic conditions and unawareness. It seems that different reports tried to find an explanation in the immediate neighbourhood and seemingly available factors, rather than probing deeper into the cause of infection and spread of infectious disease. The bacillus is said to be brought to the villages by different means like military stations, workers coming back from cities once infected, and the sanatorium treatment. On the basis of available data, Choudhary (2008) has discussed mortality among Christians – which seems that Christians were infected from motherland as there was tuberculosis there in epidemic form. Due to their presence at different places especially at cantonment and at jails as officers, other section of population got infected. It would be highly improbable to argue that tuberculosis was not in India prior to British contact; the enhanced interaction made the situation worse especially to the rural hinterland in the country. The extent to which it spread has something to do with the exposure of common man to the Europeans through various means. The link can be simplified as follow European Christian  – native Christian – native working population – native non-working population (Choudhary 2008). In the year 1936, a note on Tuberculosis in India highlighted that ‘Tuberculosis in India is primarily a disease of defective urbanization’.8 This kind of understanding called for a special kind of intervention. The same report noted that, No measures for the reduction of the incidence of Tuberculosis in India can hope to attain success unless the housing problem in these overcrowded insanitary portions of our town is

 Health/ 1936/44–14/36 – H/NAI, New Delhi.

8

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1  The Burden of Tuberculosis dealt with. …the most urgent need therefore is to stop the continued creation of future slums and this a matter for legislation (Health 1936)

This was not the first report that highlighted the need for legislation for regulating the construction of buildings in the urban areas. In 1901, the resolution passed at the general meeting of the British Congress on Tuberculosis included such measures as, That in the opinion of this congress, overcrowding, defective ventilation, damp and general insanitary conditions in the houses of the working classes diminish the chance of curing consumption and aid in predisposing to and spreading the disease (Home 1901).9

We have noticed that increasing incidence of tuberculosis was reported to the then government in different reports since Crombie’s report of 1899; it was only by the first decade of the twentieth century that the vision of Government of India gained clarity. In 1912, one such letter addressed to the Madras government shows the attitude of the then colonial government: The attention of the government of India has been drawn to the prevalence of tuberculous disease in India and to the great increase of phthisis in recent years in the larger towns and cities, and it has been represented to them as most desirable that well-equipped sanatoria should be established with as little delay as possible in different parts of India for treatment of tuberculous patients (Home 1912: 40-64).

Its acknowledgement that cities and towns are more vulnerable to the disease seems clear; however, still, the government failed to take corrective measures. S.K. Mullick wrote a letter to the Governor-General of India in the year 1918 pleading formulation and implementation of building by-laws to reduce overcrowding. He also wrote the even the best by-laws would be meaningless if that is not implemented properly. Blaming the entire population as oriental and lacking capability to comply to any by-laws without display of brut power, he wrote: …has the energy and we know from his personal efforts in the crusade against Malaria, Hookworm disease that question of sanitation occupy his foremost thought …. We are oriental people and the man in the street understands the personality and the hookkum of the Lat Sahib far better than the promulgation of the best-meant bye-laws of corporation (Mullick 1918, as quoted in Choudhary 2008:78)).

Despite this kind of appreciation of earlier work of the state, the government’s intervention in the eradication of tuberculosis was not effective, and there were a silent antagonism and sometimes vociferous opposition to this (Choudhary 2008).

 Home/Medical –A /October, 1901, No. 96–103/ NAI, New Delhi.

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Sanatorium as a Cause of Tuberculosis

13

Sanatorium as a Cause of Tuberculosis A deep association of the disease to a particular climate or at least increased or usual susceptibility to the disease can be traced back to the celebrated work of Hippocrates in the fourth century BC (Howe 1968). Even the well-known explanation of tuberculosis throughout Europe in the Romantic age (Dubos and Dubos 1952) and the establishment of sanatoria recognized the effect of climate on the disease (Dubos and Dubos 1952; Lankaster 1916; Muthu 1922). The attack on the menace remained limited to opening up of sanatorium and other preventive measures, as there was hardly any reliable medicine available for the treatment of the disease. Identification of bacillus and recognition that it is an infectious disease by Koch in 1882 remained a landmark in the combat of tuberculous disease in a scientific way. It was in 1840 that sanatorium treatment was initiated, but actual operationalization of this therapeutic means started in 1890, when confinement of the patients was thought necessary and recuperation process required a ‘change in weather’. Sanatorium treatment remained as a key to tuberculosis control programme throughout the world. In India, too, the initial governmental and charitable efforts remained concentrated towards the opening of a good sanatorium in different parts of the country and their management in good hands. The treatment of the patients was primarily done by shifting them to sanatoria, established on the criteria of isolation in terms of territorial location. These so-called favourable locations for the treatment of consumptive patients meant mild climate (to beat extreme heat) in the mountains with pine vegetation and open air. Such locations in India were the places where the least prevalence of tuberculosis was noticed in earlier days. These were the regions which otherwise were having a low incidence of the disease. The treatment of the patients was primarily done by shifting them to sanatoria, established on isolated, so-called favourable locations for the treatment of consumptive patients, especially in the mountains with pine vegetation and open air. Such locations in India were the places where the least prevalence of tuberculosis was noticed in earlier days. These were the regions which otherwise were having a low incidence of the disease. Interestingly, some of the regions where the incidence rate was low were identified as most favourable for treatment of the disease due to their location (Lankaster 1916). He stated, …by separating Chitral, Gilgit and the higher hills together with some of the isolated districts in the Central Provinces and Chota Nagpur which are inhabited by aboriginal tribes, into a ‘most favourable’ group, in which the tubercular infection would seem not to have penetrated as yet to any very large extent; and at the other extreme by including in a ‘most unfavourable’ group Lower Bengal, the southern parts of Bihar, the United Province except the north-east corner, the Central Punjab and the Kathiawar and Malabar coast.

The combative measures that started with the establishment of sanatoria, too, facilitated the spread of the disease, by exposing the virgin land and virgin people to the bacillus (Choudhary 2008). The opening up of sanatorium brought the diseased to the so-called favourable locations for treatment. In the process, the bacillus also came to these areas, where it was not found earlier, and the local people who

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1  The Burden of Tuberculosis

were otherwise away from the menace got exposed to the infection. The correspondence between the professionals and the political circle shows that the ideas of exposure or the threat of infection were known to them. At the time of opening of the first sanatorium at Dharampore, the medical officer of the area suggested that the institution should not be brought there, as the diseased people coming there for treatment would become the cause of spreading the infection to the innocent people living there (Home 1906–7). But, finally, the will of the government prevailed, and the institution was opened at the selected site, though the site of the sanatoria was changed from to ensure that it is not in proximity to the cantonment. However, when the sanatoria came, a new set of people came in contact with the disease and the infection continued unabated.

Correlates of Tuberculosis in the Twenty-First Century The determinants of health are multidimensional. One dimension of good health is the cessation of disease. This depends not only on the health services but also on the external environment, a person’s genetic endowment, and socio-economic factors such as income and education. There is a causal relationship between the prevalence of the disease and various factors like social, ecological, economic and political factors. Different studies have tried to explain them theoretically as well as statistically.10 The predictor variables influencing the level and pattern of morbidity selected for the study are age, sex, religion, caste, educational attainment, and standard of living (SLI) of the household. Since NFHS – II did not collect data on household income or expenditure, a proxy variable, standard of living, as calculated by NFHS on the basis of housing conditions, landholding and consumer durable goods, has been incorporated in the analyses. Therefore, separate variables related to these aspects have not been used. SLI is used as a categorical variable, and three categories used are ‘low’, ‘medium’ and ‘high’ for all India levels and two categories – ‘low’ and ‘medium plus high’  – for different ecological zones. Educational attainment has also been used as a categorical variable, and twofold categories have been used for the analyses. At the national level, three categories – illiterate, educated up to middle standard and educated up to higher levels – have been used, while for different ecological zones only two categories – illiterate and literate – have been considered, because the number in each of the category is low. The socio-economic analysis of the diseased person has been done on the basis of the NHFS data. NFHS-4 did have information on wealth index which can be considered comparable to the SLI that is created for NFHS-2.  R. Prasad (2002) “Air Pollution and Tuberculosis”; K.B Gupta and Tondon (2002) “Tobacco and Lung”; O.A.  Sarma (2002) “Effects of Smoking and Tobacco” published in 53rd TB Seal Campaign, TAI, New Delhi; S.  Amrith (2004) “In Search of a Magic Bullet for Tuberculosis: South India and Beyond”, Social History of Medicine, Vol. 17, No. 1, pp. 113–130.

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Correlates of Tuberculosis in the Twenty-First Century

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Table 1.1  Correlates for the prevalence of tuberculosis India (1998–1999) Predictor variables Categories of the variable Total population All patients Total Age Child and early adulthood Working population Old age Sex Male Female Religion Hindu Muslims Christian Others Caste SC ST OBC Others Education Illiterate Literate Middle High Occupation Agriculture Transport and allied Office workers Smoking No Yes Region South North-Central West North-west East North-East

Rural Low 35 48 46 51 43 48 48 50 54 39 23 64 48 43 37 21 56 43 28 37 44 42 54 46 53 42 43 15 54 40

Medium 51 45 45 42 49 45 45 43 41 53 69 33 47 49 47 49 40 50 55 48 48 44 40 46 41 49 48 60 41 53

High 15 7 9 7 8 7 7 7 5 8 18 3 5 6 16 30 4 7 17 15 8 14 6 8 6 9 9 25 5 7

Urban Low Medium 11 45 22 53 18 49 22 56 23 51 24 56 19 50 25 51 24 63 6 54 15 39 29 49 15 55 31 53 15 57 33 56 22 56 12 59 8 40 30 52 20 54 3 56 20 53 29 57 40 45 22 48 21 60 12 55 30 46 10 62

High 44 24 33 22 17 20 31 24 13 41 46 22 30 16 29 11 22 29 52 18 26 42 27 15 15 30 19 33 24 28

Source: Computed from the NFHS (2) data

An attempt has been made in this study to understand the factors by looking at the differentials in the prevalence rate of the disease among people of different socio-economic backgrounds. The cross-tabulation results reveal the effect of various factors like age, sex, region, caste, education and occupation at the national level. These factors have been cross-tabulated with the level of prevalence and the standard of living (SLI) of the people (Table 1.1). In the rural areas, the result shows that the largest proportion of tuberculosis patients (about 48%) belongs to the low-income group, while their proportion in the total population is about 35%. The effect of standard of living (SLI) is clear in both rural and urban areas. It is noticed that about 11% of the total urban population is

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1  The Burden of Tuberculosis

from the low-income group, and about 22% of the patients are from this income group. On the other hand, only 24% of tuberculosis patients are from the high-­ income group, while their share in population is about 44%. It is important to note that about a quarter of patients belong to the high-income group, which means the disease is not absent among the rich. The other impacting factors are different in rural and urban areas are different. It is noticed that in rural areas, caste and religion play an important role. A larger proportion of Muslims from the low-income group are affected than other groups. Scheduled caste population (about 64% of the patients in the low-income group are from the scheduled castes) is worst affected in the rural areas. The impact of education is more noticeable among the high-income group in rural areas. The effect of smoking is clear in both rural and urban areas. In rural areas, only a small proportion of patients belonging to the lower-income group reported that they indulged in tobacco smoking. Larger proportions of patients who smoke are found in the middle- and high-income groups. In the urban areas, too, a similar pattern is found, and lower proportions of patients who smoke are in the low-income group. Table 1.2 shows the prevalence of tuberculosis in different categories of people. Differences in the prevalence rate of the disease across various groups and various regions indicate the probability of morbidity across the population. The relationship with the standard of living and prevalence of tuberculosis across the caste and religion is obvious. People with a too low standard of living (SLI) have relatively a higher prevalence of 0.7% compared to 0.4 in the medium class and 0.3 in the high SLI category. There is a difference in the rural and urban areas. In the urban areas, people of low SLI category seem to be more vulnerable to the disease than their counterparts in the rural areas. Age is seen as an important factor, and the worst affected group is that of the old people, while children are least affected. In the urban areas, it is seen that the old people in the low SLI group are worst affected. The prevalence rate among old poor people is very high (2.3) as compared to 0.5 among the rich people in the same age-group. The lack of social security for old people is a matter of concern. Significantly, tuberculosis is more pronounced in males than in females. About 0.7% of the male population is suffering from tuberculosis compared to 0.4% of the female population in the rural areas while in the urban areas, the prevalence rate is not vastly different (Table 1.2). This indicates underreporting of the disease among the female population in India rather than their low vulnerability to the disease. This can be attributed to the fact that women in rural areas usually neglect their health and always seek treatment very late. In spite of their suffering from the disease, they do not report unless it is established clinically. This is clear from Table 1.3 that in high-income groups, the difference of occurrence of the disease between males and females is lower in the rural areas. In urban areas, the prevalence is higher among women. This indicates that the women of the upper-income strata avail the health facility and tuberculosis is detected among them. The low prevalence among women, in general, can be attributed to the non-detection of the disease.

Correlates of Tuberculosis in the Twenty-First Century

17

Table 1.2  Distribution of prevalence of tuberculosis across socio-economic and demographic categories (1998–1999) Predictor variables All Age

Sex Religion

Caste

Education

Occupation

Smoking Region

Categories of the variable Total Child and early adulthood Working population Old age Male Female Hindu Muslims Christian Others Sc St OBC Others Illiterate Literate Middle High Agriculture Transport and allied Office workers No Yes South North-Central West North-west East North-East

Rural Low Medium High Total 0.9 0.6 0.3 0.6 0.2 0.2 0.1 0.2

Urban Low Medium High Total 1 0.6 0.3 0.5 0.2 0.2 0.2 0.2

1.1 1.9 1 0.7 0.8 1 1.6 1.2 0.8 1 0.8 0.9 0.9 1.1 0.8 1 1.8 0.8

0.6 1.4 0.6 0.5 0.5 0.6 1.1 1 0.5 1 0.5 0.4 0.4 0.9 0.5 0.6 0.9 0.5

0.3 0.7 0.4 0.3 0.3 0.3 0.6 0.4 0.4 0.9 0.3 0.3 0.3 0.5 0.3 0.5 0.4 0.3

0.7 1.4 0.7 0.4 0.6 0.7 1.2 0.8 0.7 1 0.6 0.5 0.4 1.0 0.6 0.6 0.9 0.6

1 2.3 1.2 0.7 0.9 0.3 0.7 2.7 0.8 1 1 1 1.1 1 0.9 1.1 0.9 0.1

0.6 1.2 0.7 0.5 0.5 0.7 0.9 0.5 0.6 1 0.5 0.6 0.9 0.6 0.6 0.4 0.6 0.6

0.2 0.5 0.2 0.3 0.2 0.3 1 0.3 0.6 1.1 0.2 0.2 0.6 0.4 0.3 0.2 0.4 0.3

0.5 0.9 0.5 0.4 0.4 0.7 0.9 0.4 0.6 1.0 0.5 0.4 0.9 0.6 0.5 0.3 0.6 0.5

1 0.7 1.7 0.7 0.7 0.6 0.5 1.1 1.6

0.6 0.5 1 0.4 0.5 0.4 0.3 0.7 1.2

0.5 0.3 0.8 0.2 0.5 0.2 0.3 0.4 1.1

0.7 0.6 1.3 0.5 0.6 0.4 0.3 0.9 1.3

0.4 0.8 1.7 0.9 0.8 1 2.1 0.9 0.9

0.7 0.5 1 0.3 0.6 0.5 0.7 0.5 1.3

0.2 0.3 0.5 0.2 0.4 0.2 0.2 0.4 1.2

0.3 0.4 1.0 0.4 0.5 0.4 0.4 0.6 0.2

Source: computed from the NFHS (2) data

In both rural and urban areas, scheduled tribes are the worst affected social group. Among the religious groups, Hindus are least affected, in both urban and rural areas. Morbidity is high among Christians. This can be attributed to two things. One is the fact that the prevalence among Christians is reported more regularly due to the on-going missionary activities. Another fact is that many among the scheduled tribe population have embraced Christianity. The prevalence rate among smokers reveals that this kind of personal habit also has a differential effect on the morbidity amongst people of various income groups. In the urban areas, it is seen

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that the prevalence rate is higher among the people who smoke (1%). When compared across income groups, it is noticed that the prevalence rate among the rich is 0.5%, whereas it is more than three times higher (1.7%) amongst the low SLI group. The regional variation in the prevalence of tuberculosis has been noted. An important fact is that the people from low SLI are more prone to tuberculosis in the rural as well as in the urban areas, irrespective of the region. Higher prevalence is noticed even among smokers of low-income group. The analysis of 205–16 data suggests a similar pattern, as the prevalence of tuberculosis varies across categories (Table 1.3). It is evident that in rural India, the proportion of people in the higher-income category is about 39% and only about 26% of the patients belong to the high-income category. For urban India, about 71.6% are reported to the high-income category, whereas only about 55.7% of the Table 1.3  Correlates for the prevalence of tuberculosis in India (2015–2016) Predictor variables Total population All patients Age Sex Religion

Caste

Education

Smoking Cooking fuel Region

Categories of the variable Percentage distribution Total patients Child and early adulthood Working population Male Female Hindu Muslims Christian Others SC ST OBC Others Illiterate Literate Middle High No Yes Liquid Solid South North-Central West North-west East North-East

Source: computed from the NFHS (4) data

Rural (%) Low Medium 40.06 20.40 53.85 19.46 65.15 12.12 59.50 15.79 67.50 10.00 61.54 15.38 58.21 18.00 55.00 21.41 37.64 25.03 38.58 19.54 62.42 18.26 55.41 20.06 54.03 18.75 66.67 18.18 65.00 16.54 52.74 22.26 37.06 22.70 12.08 20.13 53.64 19.22 33.33 22.22 4.72 9.84 61.92 21.04 23.38 23.94 29.79 22.59 34.77 27.38 63.10 17.37 79.92 11.25 41.92 26.51

High 39.54 26.70 22.73 24.72 22.50 23.08 23.79 23.59 37.34 41.88 19.32 24.53 27.22 15.15 18.46 25.00 40.23 67.79 27.14 44.44 85.44 17.04 52.68 47.62 37.85 19.53 8.83 31.57

Urban (%) Low Medium 11.82 16.60 21.47 22.80 20.83 20.83 21.15 21.82 16.67 41.67 25.00 0.00 22.67 22.43 23.02 22.56 14.01 26.85 18.39 17.24 29.57 24.81 21.79 25.70 20.71 23.13 14.29 16.90 34.38 26.41 25.49 25.24 13.09 21.11 2.96 11.24 18.87 24.51 20.00 40.00 4.90 16.83 51.38 33.56 12.63 22.04 14.64 16.51 9.87 22.37 24.39 21.95 44.24 24.82 20.19 28.13

High 71.58 55.74 58.33 57.04 41.67 75.00 54.89 54.42 59.14 64.37 45.61 52.51 56.16 68.81 39.22 49.27 65.80 85.80 56.62 40.00 78.27 15.06 65.32 68.85 67.76 53.66 30.94 51.68

Correlates of Tuberculosis in the Twenty-First Century

19

patients are reported to belong from the high-income group. On the lower-income level, in urban areas, where only about 12% belonged to lower wealth index, about 22% of patient belonged to poor category. It is noted that about 62% of patients who belonged to scheduled caste category are from lower wealth index compared to 54% of OBC. However, what is more conspicuous to note is that about 66% of others (non-SC, non-ST, non-OBC) are from poor socio-economic category. It is important to analyse the different prevalence rate for these categories as it can throw light on the specific socio-economic and demographic categories. One of interesting variable which was not available in NFHS-2 is the use of cooking fuel, as the type of fuel has considerable influence on the respiratory health of not only the users but also the members of the households. The table indicates clearly that those using solid fuel (wood, cow-dung cake, etc.) are more from the poor wealth index in both rural and urban areas. In urban areas, even poor have better access to non-solid fuel compared to the rural areas. Interestingly rather surprisingly, smoking does not seem to have a clear association with poverty, as the prevalence of tuberculosis, across wealth index category and smoking category, is almost uniformly distributed in both categories. During 2015–2016, there has been large scale variation in the prevalence rate of tuberculosis across different socio-economic categories and across regions in India. There has been substantial decline in the prevalence of tuberculosis during 1998–1999 and 2015–2016. In rural India, the prevalence has gone down from 0.6% to 0.34%, whereas in urban India, it has declined from 0.5 to 0.25%. There seems to have a secular decline across categories and regions. However, the variation in the pattern of tuberculosis remains. Christians across categories report higher prevalence in both rural and urban areas. It is to be noted that this higher prevalence is primarily due to the fact that tribal across regions in India have adopted Christianity. However, when we look at the caste data across wealth index, it is scheduled caste (SC) from the poor wealth index that shows the highest prevalence, though when we compare overall caste categories, schedule tribes (ST) remains the worst affected. Caste and religion do play significant roles in making a person more vulnerable to tuberculosis. Smoking is another significant background characteristic that seemingly is associated with the prevalence of tuberculosis. Across categories of wealth index, smokers (0.67%) have a way higher prevalence of tuberculosis compared to non-smokers (0.25%) in rural India. A similar trend is seen in urban areas and across wealth index (Table  1.4). Northeastern India remained the worst affected region compared to other parts of the country. In the rest of the country, Eastern part (0.47%) is relatively more affected. While southern India is better for rural population (0.33%); for urban areas, Eastern (28%) and Southern (27%) part are very close. What is consistent and can be said a secular trend is that across all categories and all regions, poor wealth index has higher prevalence compared to other two wealth index categories. It can be said if all other things remain the same, poverty explains the higher vulnerability of individual to bacillus.

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Table 1.4  Distribution of prevalence of tuberculosis across socio-economic and demographic categories (2015–2016) Predictor variables All Age

Sex Religion

Caste

Education

Smoking Cooking fuel Region

Categories of the variable Total Child and early adulthood Working population Male Female Hindu Muslims Christian Others SC ST OBC Others Illiterate Literate Middle High No Yes Liquid/electricity Solid South North-Central West North-west East North-East

Rural (%) Urban (%) Low Medium High Total Low Medium High Total 0.46 0.33 0.23 0.34 0.46 0.35 0.20 0.25 0.05 0.02 0.02 0.03 0.05 0.04 0.03 0.04 0.54 0.06 0.04 0.43 0.45 0.77 0.60 0.49 0.47 0.44 0.44 0.62 0.33 0.33 0.18 0.36 0.85 0.46 0.46 0.53 0.31 0.28 0.34 0.58 0.63

0.31 0.02 0.02 0.28 0.31 0.60 0.49 0.31 0.44 0.28 0.27 0.42 0.30 0.27 0.21 0.23 0.67 0.27 0.33 0.34 0.25 0.26 0.26 0.31 0.49

0.22 0.02 0.02 0.20 0.20 0.57 0.26 0.21 0.45 0.20 0.16 0.33 0.21 0.21 0.12 0.16 0.57 0.22 0.24 0.27 0.16 0.16 0.20 0.22 0.47

0.35 0.04 0.03 0.31 0.32 0.64 0.38 0.36 0.46 0.31 0.32 0.50 0.29 0.26 0.14 0.25 0.67 0.23 0.37 0.33 0.20 0.21 0.29 0.47 0.54

0.26 0.04 0.06 0.44 0.46 0.63 0.68 0.51 0.53 0.41 0.46 0.57 0.39 0.38 0.30 0.39 1.04 0.48 0.45 0.47 0.51 0.22 0.41 0.49 0.58

0.20 0.08 0.00 0.33 0.31 0.57 0.36 0.36 0.49 0.32 0.32 0.44 0.30 0.32 0.30 0.33 1.01 0.31 0.39 0.36 0.27 0.26 0.33 0.32 0.50

0.12 0.02 0.04 0.17 0.22 0.35 0.19 0.24 0.33 0.19 0.15 0.26 0.19 0.21 0.12 0.17 0.37 0.19 0.27 0.23 0.15 0.15 0.18 0.16 0.34

0.15 0.04 0.04 0.23 0.27 0.42 0.24 0.32 0.40 0.24 0.19 0.37 0.25 0.24 0.14 0.22 0.54 0.21 0.39 0.27 0.18 0.17 0.24 0.28 0.41

Source: computed from the NFHS (4) data

Tuberculosis as a Disease of Poverty Captain Waters, the officiating senior medical officer, submitted his report on phthisis, malaria and other diseases in the Port Blair jail and tried to link the poor living conditions especially overcrowding and poor or no ventilation in the jail with prevailing weather conditions that favoured the spread of phthisis in the jail between 1894 and 1903. His report from Port Blair Jail under home department states: In the Andaman there is rain for at least seven months of the year and during that period the prisoners and their clothing are very wet often. …there is no arrangement for drying these wet clothes and they have to be disposed off in the barracks. During the heavy rain every possible air inlet is closed by the convicts … become foul and deleterious to health. Thus

Tuberculosis as a Disease of Poverty

21

all conditions of moisture, heat, and absence of direct sunlight required for the propagation of disease are present ….11

A decade after the report of Captain Waters on Port Blair Jail, Forster, a professor of pathology at Lahore Medical College, submitted a report entitled ‘The Etiology of Tubercle in the Punjab Jails’ in June 1913. This report downplayed the role of the environment whatever it may be, and there was no mention of the climatic variable in this report.12 It was the time when writings across the world from Europe to America on tuberculosis did talk of the association of climate and tubercle bacilli and climate as a factor determining the possible spread of the disease. The NFHS data clearly establish a link between lower standard of living and the prevalence of tuberculosis during both the periods, viz. 1998–1999 and 2015–2016. It indicates that poor people have a higher probability to become infected by tuberculosis. The global data also suggests that about 99% of deaths from tuberculosis occur in developing countries. When we analyse within these countries, the studies like ‘country within county’ suggest a different epidemiological transition from the worse-off regions compared to better-off regions. Global Report on Tuberculosis (2018) brings to notice that: Many new cases of TB are attributable to undernourishment, HIV infection, smoking, diabetes and alcohol use (five of the indicators featured in the TB-SDG framework). A recent modelling study shows that eliminating extreme poverty and providing social protection (emphasis added) could substantially reduce TB incidence.

The link between poverty and the prevalence of tuberculosis is evident from different data sets over time. During the colonial period, it is recorded in almost all successive reports from Crombie’s report in 1899 to Cummins in 1932 to Sprawson in 1938 that poor are more prone to suffer from tuberculosis for different reasons including due to the higher treatment cost. The large-scale household data, which can be analysed and distribution can be seen across wealth index or standard of living (SLI) categories, also established from successive periods, like 1998–1999 and 2015–2016 that poor are have higher prevalence of tuberculosis compared to their rich counterpart and it is true across caste, religion and region (Table 1.4). This has been a consistent understanding that tuberculosis is the outcome of poverty and poor living conditions. McMillen and Brimnes (2010:205) while discussing contesting opinion on BCG did articulate that, ‘it is high time that our ‘experts’ felt more humble about themselves…Our essential disease as a society in this world is poverty and not the multifarious ailments that result from poverty’.

11 12

 Home/Port Blair – A/No. 19–21/November 1903/NAI, New Delhi.  Home/Jail – B/No. 12/June 1913/NAI, New Delhi.

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Tuberculosis as Nemesis! Tuberculosis is said to plunge humankind for centuries; it seems to be a perennial associate of human life (Walter 1964). During the late eighteenth century, the population of Hawaiian Islands fell by half owing to the spread of tuberculosis (Gillum et al. 2008). Daniel (2006) identifies tuberculosis as an ancient scourge, which has been prevalent since prehistory. Indians go one step ahead when they pledge its eternal link arguing that the king of gods ‘the moon’ suffered from the disease of tuberculosis. During the eighteenth and nineteenth centuries, it has reached a proportion that can easily be said epidemic and was known as ‘captain among these men of death’ (Daniel 2006). In the twenty-first century, the global health estimates suggest that every second one new person contacts tuberculosis (WHO 2007). In a seminal work of the twentieth century, Dubos and Dubos (1952) coroneted tuberculosis as the ‘white plague’. The research suggests that the disease appeared on the face of the earth some 150 million years ago (Hayman 1984), the reign of tuberculosis is far from over. We are now witnessing the emergence of tuberculosis in the developed world. As per the study of Centre for Disease Control and Prevention (CDC) 2018, all 50 states of United States of America have reported incidence of tuberculosis, and about one-fourth of the total world population is infected with the disease. United Nations general assembly in its meeting on 26th September 2018 recognizes tuberculosis as a global epidemic and reiterates the goal of Moscow Declaration (2017) to end tuberculosis which was rearticulated at Delhi End TB Summit held in March 2018 (UN 2018). The situation of tuberculosis at the current juncture of history reminds me of what Ivan Ilich (1976) used the conception of nemesis. His articulation of Prometheus, who was driven by greed and in unbounded presumption (hubris) stole fire from heaven and brought inevitably nemesis on himself, drives me to visualize the medical developments across the world and how apathy towards the poor has turned tuberculosis as a nemesis. The reason for such outcome lies in the nature of social relations which is ruled by the pro-profit motives with little respect for the ecology and human ecology as indicated by Weber in his seminal work, ‘Protestant Ethics’. Mckeown (1976) in his study established that it is the surplus food that contained tuberculosis in Europe and not the ‘magic bullet’. The world after the Second World War decided to be dependent on ‘streptomycin’ to eliminate tuberculosis rather than improving nutrition for the poor across the world. Despite advancements in the understanding of diseases, improvements in diagnostic, preventive and curative realms, the disease is far from getting eliminated. Zinsser’s (1934) understanding as quoted by Farmer (2001) seems relevant to indicate that tuberculosis is anything but eradicated: ‘However secure and well-regulated civilized life may become, bacteria, protozoa, virus, infected flies, lice, ticks, mosquitoes and bedbugs will always lurk in the shadow ready to pounce when neglect, poverty, famine, or war lets down the defence and even in normal

References

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times they prey on the weak, the very young and very old, living along with us, in mysterious obscurity waiting their opportunities.13

Way back in 1957, the then president of India pointed out at the Fourteenth International Conference of the International Union against tuberculosis, ‘No part of the world can be safe from tuberculosis if it remains prevalent in any other part’ (Walter 1964:462). Increasing mobility across the globe makes this reality more vivid, and any part of the world today is not a safe place including those which have announced the elimination of tuberculosis.

References Amrith, S. (2004). In search of a magic bullet for tuberculosis: South India and beyond. Social History of Medicine, 17(1), 113–130. Arnold, D. (1985). Medical priorities and practices in nineteenth century British India. South Asia Research, 5, 167–183. Arnold, D. (1993). Colonizing the body: State medicine and epidemic disease in nineteenth century India. Berkeley/London: University of California Press. Brimnes, N. (2010). Fractured states: Smallpox, public health and vaccination policy in British India 1800–1947 new perspectives in south asian history, vol. 11. Modern Asian Studies, 44(3):666–670. Choudhary, B. K. (2008). Colonial policy and spread of tuberculosis: An enquiry in British India (1890–1940). Journal of Health and Development, 4(1–4), 65–86. Crombie. (1899). Report on the recent congress on tuberculosis at Berlin with special reference to the prevalence and prevention of the disease in India to the Government of India in October. Home/Medical-A/No. 95/October 1899. New Delhi: NAI. Cumins, C. L. (1932). Health, No. 79/32 – H, 1932. New Delhi: National Archive of India (NAI). Daniel, T. M. (2006). The history of tuberculosis. Respiratory Medicine, 100, 1862–1870. DGHS. (2018). India TB report 2018 – RNTCP annual status report. Central TB division, directorate general of health services. New Delhi: Ministry of Health and Family Welfare. Dubos, R., & Dubos, J. (1952). The white plague: Tuberculosis, man and society. Boston: Little Brown and Company. Farmer, P. (2001). Infections and inequalities: The modern plagues. Berkeley: University of California Press. Gillum, N., Ryan, S., & Selkow, M. (2008). Tuberculosis. The history of disease. Scientific and technical writing. Massachusetts Academy of Math and Science, 3, 70–78. Gupta, K. B., & Tondon. (2002). Gupte, M.  D., Ramachandran, V., & Mutatkar, R.  K. (2001). Epidemiological profile of India: Historical andcontemporary perspectives. Journal of Biosciences, 26(4), 437–464. Harrison, M., & Pati, B. (2009). The social history of health and medicine in Colonial India. London/New York: Routledge. Hayman, J. (1984). Mycobacterium ulcerans: An infection from Jurassic time? Lancet, 2, 1015–1021. Health (1936) /44–14/36 – H. National Archeive of India, New Delhi. Home. (1901). Medical –A /October, 1901, No. 96–103/ NAI, New Delhi

 Emphasis added to the original, Zinsser (1934) quoted in P.  Farmer (2001) “Infections and Inequalities: The Modern Plagues”, University of California Press, Berkeley.

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Home. (1906). Proposed establishment at Almora of and institution for treatment of TB on modern lines, home/medical 6–7. Delhi: NAI. Home. (1912). Establishment of sanatoria for treatment of patients suffering from tubercular disease, home/medical 40–64. Delhi: NAI. Home/Jail – B/No. 12/June 1913/NAI, New Delhi. Home/Port Blair – A/No. 19–21/November 1903/NAI, New Delhi. Houghton, L. E., Sellors, T. H., & Starkie, E. T. W. (1953). Aids to TB nursing. London: Bialliere, Tindle and Cox. Howe, G. M. (1968). National Atlas of disease mortality in United Kingdom. London: Nelson. Ilich, I. (1976). Medical Nemesis. New York: Pantheon Books. Klencke. (1843). Lankaster. (1916). Report on tuberculosis in India. New Delhi: NAI. McKeown, T. (1976). The role of medicine: Dream, mirage or nemesis. Oxford: Blackwell. McMillen, C.  W., & Brimnes, N. (2010). Medical modernization and medical nationalism: Resistance to mass tuberculosis vaccination in postcolonial India, 1948–1955. Comparative Studies in Society and History, 52(1), 180–209. Meachen, G. N. (1936). A short history of tuberculosis. London: John Bale Sons and Danielsson Ltd. Medical/1927/No. 43/1–5/January 1928, State Archive of Karnataka, Bangalore. Moscow Declaration. (2017). Muthu, A.  C. (1922). Pulmonary tuberculosis: Its etiology and treatment. Tindall and Cox: Bailliere. Neelakantan, V. (2018). Tuberculosis control in postcolonial South India and Southeast Asia: Fractured sovereignties in international health, 1948–1960. Wellcome Open Research, 2, 4. https://doi.org/10.12688/wellcomeopenres.10544.2. Olea-Popelka, F., et al. (2014). Zoonotic tuberculosis in human being caused by Mycobacterium bovis – A call for action. The Lancet Infectious Disease, 17(1), e21–e25. Pati, B., & Harrison. (2001). Health, medicine, and empire: Perspectives on colonial India. New Delhi: Orient Longman. Pearson, K. (1912). Tuberculosis, hereditary and environment. London: Dulau and Company. Roswurm, J. D., & Raney, A. F. (1973). Sharpening that attack on bovine tuberculosis. American Journal of Public Health, 63(10), 884–886. Sprawson, C. A. (1938). Peculiarities of the tuberculosis problem in India. The British Journal of Tuberculosis, pp. 128–134, taken from Health, No. 37-9/38-H, 1938, NAI, New Delhi. Srinivasan, S., et al. (2018). Prevalence of bovine tuberculosis in India: A systematic review and meta-anlaysis. Transboundary and Emerging Disease, 65, 1627–1640. United Nations. (2018). Global health and foreign policy- Agenda item 129. http://www.stoptb. org/webadmin/cms/docs/Political-­Declaraion-­on-­the-­Fight-­against-­Tuberculosis.pdf Walter, P. (1964). Pulmonary tuberculosis: Bacteriology, pathology, epidemiology and prevention. London: Norm Macdoland. WHO. (2007). Tuberculosis fact sheet. http://ww.who.int/mediacentre/factsheet/fs104/eng

Chapter 2

Spatiality of Tuberculosis

‘Geography matters’, the statement is true for features and phenomena of every kind. Whatever is the level of technology, whatever is the pitch of rhetoric about ‘death of distance’, the fact remains that geography is anything but getting annihilated. The level of development, the existing level of technology, livelihood opportunities, available constrains and limitations vary across the globe at multiple scales. A large country like India experiences such variations at multiple levels in different ways including different political and administrative priorities. These in combinations have resulted in the prevailing differences in the patterns of mortality and morbidity or the incidence of a particular disease. India lacks information on health and disease at a segregated level and the data regarding prevalence, incidence and mortality at best been limited to estimations in various reports and sample surveys (annual report of Ministry of Health and Family welfare and periodic surveys by National Sample Survey Organisation, National Family and Health Survey). This chapter maps the pattern of tuberculosis in India beginning 1899, the year for which first official record is available to 2015–2016, the fourth round of NFHS data. The chapter for many might be like a snapshot, but it does indicate towards major episodes and spread of disease owing to different changes in geography and economy in India. The distribution of people and phenomena varies across the world and so is the distribution of disease and infirmity. Disease, when considered as an outcome of vagaries of invisible forces, was distributed unevenly and continues to be distributed unevenly when it is understood as a consequence of the interaction between the pathogens, the host and the environment. Health under this conception of ‘agent– host–environment’ triad largely depends on factors like environmental conditions (physical, biological and social) in the region, demographic, cultural and economic conditions. These conditions constitute risk both environmental and societal for an individual or group to fall sick or stay healthy. Many earlier studies have identified the macro-level sociocultural, economic and political influences that are important in contextualizing ‘ecology of disease’ and spatiality of disease (Howe 1968; Learmonth 1988; Lilienfeld 1976). Some of the earlier studies can be broadly © Springer Nature Switzerland AG 2021 B. K. Choudhary, Ecology of Tuberculosis in India, Global Perspectives on Health Geography, https://doi.org/10.1007/978-3-030-64034-7_2

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categorised into medical, ecological, socio-economic and political. The dominant stream of medical studies falls under the medical tradition. Scholars have discussed the growth and maturity of the agent (pathogens, virus, bacteria, etc.) that cause a particular disease and also relative susceptibility of the host (human) to these agents. The combination of the two factors to some extent determines spatiality of disease like tuberculosis. Harvey’s ‘blood circulation theory’ can be considered the beginning of such studies which later got consolidated and developed as ‘germ theory of disease’ (Black 1968). The unanimity of any kind remains unheard, and some of the scholars within medical fraternity were more concerned with the role of the environment than the status of agent and host. They argued that environment including social environment plays a dominant role in ascertaining the susceptibility of the host and maturity of the agent. They highlighted the role of various factors like sunlight, the direction of wind and the amount of precipitation, nature of vegetation and soil, amount of humidity and so on (Hippocrates (fourth century B.C.), Lilienfeld 1976; Howe 1968). Scholars like Pavlovsky (1962) and Meade (1977) have discussed the role of soil types, acidity of soil and precipitation in the occurrence of particular diseases. The role of altitudinal mobility and the cycle of disease has also been studied (Roundy 1976). Researches related to the vitality of biological factors (Barret 1993; Learmonth 1988) developed in epidemiological studies (Buchanan 2000; Ebrahim et al. 2016), which later got improvised as ‘social epidemiology’ (Ebrahim et al. 2016). The said scientific study of disease and health in India started during the colonial period. It was Europeans who started drawing maps of various diseases like malaria and plague and disease-prone areas like Bengal delta. Probably, the first scientific attempt to identify regional factors associated with the prevalence of disease in India was made by McClelland in 1859 (Akhtar 1992). In the last decade of the nineteenth century, some other scholars like Macnamara (1880), Moore (1880), Fayrer (1882) and Chevers (1886) undertook geo-medical studies for various diseases in different parts of India. The work of Hesterlow (1929) on environmental factors and disease in Southern India is considered as the foundation of modern medical geography in India (Akhtar 1992). Later, Learmonth (1958, 1961) provided a scientific base to researchers and planners in India for the study of disease ecology. Critical literature on health, development and environmental sustainability has led us to a better understanding of the prevailing scenario of disease and health in a world of finite resources and overburdened ecosystems. There has been a long history of an association between social class and health. Periodically, the results of class comparisons in mortality rates and morbidity prevalence have been reported (Najman 1993). Following the writings of Marx, Weber and others, there has been a proliferation of studies indicating that an individual’s life chances and lifestyle can be intimately related to that person’s economic and occupational status in society. Socio-economically determined health inequality has been the central concern in the past and will continue to be important in future demographic and economic studies. However, the transition theories, which blossomed in the 1970s and 1980s, suggested an inevitable move towards the incorporation of environmental factors in

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the epidemiological studies and in the analysis of the prevalence of infectious diseases (Pedersen 1996). The effect of the environment and the forces that shape the environment in which individuals lived became the central theme of disease and health-related studies. There are many approaches in both medical and social sciences to understand the interactions between people and their environment. Disease is an outcome of the existing interaction between people and their environment both physical and human. Tuberculosis is not an exception to this interaction, and its prevalence has a clear link with poverty. However, in recent times, many other factors, especially social, cultural and behavioural, have also been identified as of equal importance. The pattern of prevalence depends on differences in cultural practices, political decisions and historical growth of the society along with the changing ecological factors. The information about existing variations is important for conceptualizing the political ecology of disease. India still lacks large-scale information about ecology and its association with a particular disease, and data for the maintenance of positive health is quite inadequate. The maxim ‘best way to avoid the problem is to hide it’ is applicable for India at least in the health sector. Though there are some studies on various types of aetiology and their association with particular disease epidemiology, these studies provide only partial explanations as they capture only those causal factors that can be quantified. Such efforts do provide a certain kind of information that is required to control the disease at one point of time in one particular environment. However, because of their limitations in terms of assembling the cultural practices, value systems and the role of the state in shaping the environment, such studies provide a myopic view of the problem.

Colonization and Tuberculosis The period between the fifteenth and the nineteenth centuries witnessed an era of expanding empires by the European powers and growing resistance against them. The knowledge of the ground realities which enabled this expansion came from the discipline of geography – commonly a subject that deals with the distribution of phenomena including people and resources on the earth’s surface. Geography is often considered as a discipline that has served those in power than those who need basic recourses. It was in this background that the new knowledge of ‘geography’ based on unchallenged naval capacity was used by the Europeans to expand their empire across the globe. The intention of this expansion was nothing but the accumulation of wealth and the occupation or rather the exploitation of the so-called ‘unclaimed’ land full of mineral and other resources. There were unintended consequences as well ranging from cultural amalgamation and the flow of tropical disease to Europe. Among the unintended consequences of development was the creation of disease network, which spanned the world (Watts 1999). Like the trading network, disease network too was first put in place by the Portuguese.

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The expansion of empire through trade relations and other coercive and subversive methods that included economic, political and military means continued and was called imperialism. Imperialism was a complex ideology, which had widespread intellectual, cultural and technical expression in the era of European world supremacy rather than a mere set of economic, political and military phenomena. There were different kinds of justifications for the imperial rule right from cultural supremacy to technological advancements. The spread of western medicine is one such justification for imperial rule. Disease was a potent factor in the European conceptualization of indigenous society. The hazards and depredations of disease were conceptualized as an established part of a hostile and yet untamed tropical environment. Africa, Asia and the Americas were all seen to have their fatal and incapacitating diseases, and only through the superior knowledge and skill of the European medicine, it was thought possible to bring those under control (Arnold 1989). An attempt is made to analyse the nature of the sense of the past and to trace the changes in conceptualization with regard to tuberculosis. As the conceptualization of disease changes, its therapeutic measures also went under change. Here is an attempt to analyse such changes in Indian society. India was under colonial rule for more than three centuries. A plethora of studies on various diseases and their causations at different points of time by different schools of historians is available to ascertain the nature of disease, its vagaries and its efforts to contain them. Obviously, ‘enormous efforts’ have been reported even by the colonial government to curb the menace of certain diseases like plague and syphilis at specific junctures of history, as these diseases were highly contagious and knew no boundary. One finds little on the part of the government or on the part of people or charitable societies when it comes to tuberculosis until the mid-twentieth century despite tuberculosis being as old as the human civilization. The real nature of the disease could be identified only at the dawn of the twentieth century, when it had already declined in Europe. The reasons for the reported decline of tuberculosis in the west are multifarious ranging from nutritional improvement of people to improvement and implementation of public health (Fairchild and Oppenheimer 1998). It only can be considered unfortunate that tuberculosis despite being contagious and communicable did not have the dramatic character of acute infectious diseases like cholera, smallpox and plague. Indian public mind has a far vivid memory of these diseases compared to tuberculosis, though tuberculosis still constitutes a significant number of untimely deaths. Government reports did mention lung disease as cause of death. But the annual reports of the sanitary commissioners and annual reports from civil hospitals and dispensaries did not even name phthisis or consumption or tuberculosis as a disease until 1902.1 The report submitted to the government in 1902 from different states and presidencies on civil hospitals and dispensaries was for the year 1900. In the report, there was a mention of confinement cases, which were related to the lunatics

1  Home/Sanitary/No. 82–142/July 1891/NAI, New Delhi; Home/Medical/No. 87–129/July 1896/ NAI, New Delhi; Home/Medical – A/No. 19–32/January 1902/NAI, New Delhi.

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and other contagious diseases, especially venereal diseases which were on the rise. To control such diseases, the government passed legislation for the extension of the rule to prevent venereal diseases outside cantonment in the year 1899.2 Only one province in India, i.e. North-West Province, tried to maintain the death record, and there was a statistics of 1897 in which the causes of death was verified for 15,611 individuals and tubercle of lungs as a cause of death was mentioned.3 However, the jail administration was more specific in this regard as their report submitted in the year 1903 did show the records giving an idea about the number of admissions and deaths due to tuberculosis/pulmonary phthisis since 1896 and from 1894 for one cellular jail, i.e. Port Blair.4 Government of India under the British Empire slowly had no choice left than to acknowledge the severity of the disease which are found noted in different records. Since the 1899 report by Crombie, various reports by different reports mentioned about increasing incidence of tuberculosis. It was only in the first decade of the twentieth century that the vision of the Government of India gained clarity. Consequently, the then Indian government, in 1912, wrote to several provincial governments with a clear vision to address the menace. Medical section under home department in 1912 wrote to the Madras government, which shows the attitude of the then colonial government: The attention of the government of India has been drawn to the prevalence of tuberculous disease in India and to the great increase of phthisis in recent years in the larger towns and cities, and it has been represented to them as most desirable that well-equipped sanatoria should be established with as little delay as possible in different parts of India for treatment of tuberculous patients. The government of India are advised that the treatment of phthisis in the early stage of the disease in sanatoria, in which patients can receive the most minute daily attention of specially experienced physicians, affords the only hope of cure, and they believe that many valuable lives will be saved if suitable institutions for the treatment of tuberculous patients are established in this country.

The official correspondence of the British Empire during the last 50 years of its operation in India continued to mention and air these concerns without much action. The Crombie in 1899, which was followed by Lankaster report, established the fact that tuberculosis in India was widespread. Since this was established, the professionals started discussing the possible and probable combative measures. It is evident from different reports and government communications that invitation to doctors who were posted in India was extended to participate in Annual Tuberculosis Conference to be held in Great Britain. At some instances, the then Government in India granted the permission, but mostly, permission was denied especially those who were in India. As an alternate measure, the government every time put a ‘note’ saying if those posed in India are currently in Britain, they can participate in the tuberculosis conference. Tuberculosis in Britain was already contained owing to  Home/Sanitary – A/No. 207–214/October 1899/NAI, New Delhi.  Sanitary Report of North-West Province for 1897, Home/Medical-A/No. 95/October 1899/NAI, New Delhi. 4  Home/Port Blair – A/No. 19–21/November 1903/NAI, New Delhi. 2 3

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enhanced nutrition and improved sanitary and public health conditions, and the prevalence of tuberculosis was getting lowered at an expected rate. The life of British nationals in the colonies outside the motherland came to the focus, and every effort had to be made to protect them from tuberculosis. The action on ground was far from matching compared to the heightened concerns shown in the paper and reports. The repeated reports and resolutions from the British Congress in London continue to exert adequate pressure on the imperial government to take action against the menace, which I discuss in Chap. 4.

Geographical Spread of Tuberculosis The ecological approach5 is very appropriate to study a country like India with its diverse physical and sociocultural landscape. One of the factors that give rise to various diseases of different kinds is the environment, which is directly or indirectly an outcome of the existing physical as well as politico-economic milieu. India is a country of not only the celebrated environmental diversity but also dissimilar sociopolitical and varied historic-cultural landscape. The state response to the disease has varied greatly over time and space. During the colonial period, the state was concerned with the spread of various diseases and recurring epidemics. Different measures were taken to combat these diseases. However, the impact of these efforts was limited. A considerable number of men (and later women) were trained in medicine, hospitals and dispensaries were opened up that attracted considerable numbers of patients, and issues of disease prevention and public health provision were addressed with enthusiasm. Nevertheless, many of these measures were restricted in their impact to a relatively small section of the population, firstly to the European civil and military servants and their families and later to those, who had access to urban facilities. The local population in the pre-Independence times, however, did not adopt the sanitary reforms, which swept Europe in the nineteenth and early twentieth centuries. The varying administrative and political status of various regions like ‘princely states’ of the country resulted in different health policies across the country. Even after independence, the situation has not changed as health is still a state subject, which means different provinces are free to prioritise the areas of interest and implement them through different administrative setups. Against this background, the present study tries to analyse the prevalence of tuberculosis, the factors that led to the variance in morbidity rate and the treatment-seeking behaviour in different parts of the country. The country started the combative measures way back in 1908  in the form of sanatorium treatment. The current combative strategy is directly observed therapy short course (DOTS) under Revised National Tuberculosis Control Programme (RNTCP). Delhi is the first administrative unit, to achieve full 5  Ecological not in the classical sense of species habitat and energy flow but in revised sense of cultural, political and social ecology which looks at the creating and modifying forces with greater emphasis.

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coverage. It is for this reason that Delhi has been selected as a case study to analyse the treatment-seeking behaviour and the perception of the people towards the provided treatment. Most important among all the issues related to tuberculosis in India during the early twentieth century was its extent in India as compared to that of Europe especially Britain. Initially, it was considered that India had been in a comparatively better condition than Europe when it came to morbidity or mortality from tuberculosis. Crombie (1899) in his report compared different types of tuberculosis and suggested that: …they confirm the experience of all medical men in India, that in contrast with that of Europe disease of the chest and phthisis among them take quite a subordinate place in the sickness and mortality of India and that the tubercular diseases of childhood are conspicuous in consequence of their rarity among the civil population.

By the time the next report was submitted in the year 1916 and subsequently published in 1920, the disease had started taking a heavy toll, and the Lankaster (1912) report doubted that whether tuberculosis in India was on a rise or was only a matter of non-reporting. Lankaster (1912) started his report writing by quoting a resolution at the second All-India Sanitary Conference held in Madras in 1912 as: That statistics appear to show that this disease (tuberculosis) is rapidly increasing in India, especially in urban areas, but that is doubtful whether the increase is real or apparent only due to such causes as more accurate diagnosis and registration.

An important revelation referred to by the proponent of the static theory of tuberculosis in India was that of Dr. Conwell, who in 1829 noted, ‘it is a generally perceived error that the pulmonary tuberculosis in India is rare’. He attributed it to improved means of physical examination (stethoscope). However, the ‘new machine’ and the new kind of training had more to do with his argument than the reliability of the stethoscope in the detection of tuberculosis. It is now known that this is not sufficient to establish the existence of tuberculosis per se. The mortality record of Christians in India, which remained static, provided evidence in support of the static theory of tuberculosis. A similar argument was advanced on the basis of the letter from the sanitary commissioner dated 2 June 1902 to the Government of India on the report on this congress noted, ‘it was formerly believed that in India phthisis was a rare disease, but it has long been recognized that this belief was not correct, and there is now a body of opinion that the disease is common’ (Sanitary Commission 1902). An issue of Indian Medical Gazette published in June 1902 also subscribed to a similar opinion and was quoted in the report by the sanitary commissioner that ‘in the Philippines, tuberculosis kills more people than malaria or dysentery. The same is true for India. Yet tuberculosis has been called ‘White Man’s Plague’ and till recently it was thought to be rare in India’ (ibid). However, the report accepted that it would be naive to say that the disease in India was equally prevalent in the past as it noted that it would not be easy to determine whether increased facilities for observation accounted for this change or whether there is a real increase in the frequency of the disease. Both the factors equally contributed to the increased prevalence rate of tuberculosis in India. It was thought probable that

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many cases could be detected by the use of modern methods, ‘while in recent years the aggregation of susceptible subjects in factories and schools has almost certainly led to an actual increase in the prevalence of the disease’. The confidential correspondence between the Government of India and the provincial governments indicate a contrasting picture as the chief commissioner of Delhi in his letter dated June 30, 1916, writes: … The Chief Medical Officer Delhi considers that there is no reasonable ground for doubt as regards to the prevalence of the disease in the city and his own experience is that the disease is on the increase in India generally.

However, the confidential letter no. 111 dated 23 February 1916 noted the number of police constable invalidated due to pulmonary consumption (Home 1916). The report also argued that those in the police force get recruited from other states too. They get medical clearance before joining the force. It, therefore, got established that these police personnel get infected by the disease while in service. Different reports and studies and personal experiences of the doctors suggest that tuberculosis was not new to Indian soil, but at the same time, they all in one voice concede the fact that there has been virgin soil in India and especially Indian villages have remained safer places as far as the menace of tuberculosis is concerned. Lankaster (1912) in his study was clear on this when he reported that: Whatever may be thought regarding the greater cities, tuberculosis in its various forms has spread to a large extent in many regions where formerly it was almost unknown, and it is becoming more and more prevalent in rural areas instead of being confined to the towns.

Cummins (1932) in his report on ‘Tuberculosis in India’ remained suspicious about the prevalence rate of tuberculosis in India in the distant past. He reviewed the various doctor’s diaries and reported that All in contact with the problem agree that the disease is increasing and, although accurate statistics are not available to furnish quantitative data, the evidences seem to point out the increase being rapid and progressive. (Health 1932)

Muthu (1922) in his study of tuberculosis in Madras (now Chennai) recognized that while tuberculosis had been declining in Europe and the United States, it was slowly increasing in India during last 50 years. It was in 1938 when Major General Sprawson (1938) found Indian population more susceptible to tuberculosis than other population groups. He highlighted that ‘Indian population as a whole is more susceptible to tuberculosis than that of England and Scotland … the disease runs acuter course  – immunity in India is less’. It was a kind of self-acceptance that India, at least some part of it, had been safe from the menace of tuberculosis, because if the virgin population were exposed, it would have more susceptibility after exposure. The concept of virgin races was highlighted in the report by Lankaster (1912) as well, the inhabitants of virgin areas have shown a marked degree of hyper-­ susceptibility to tuberculosis when they have migrated to cities. Lankaster (1912) further stated that the impression left upon the mind after careful enquiry, with comparison of such statistics as are available, is that many large areas in India, which 40  years ago were particularly

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‘virgin soil’ to tuberculosis, have become considerably infected; that phthisis has been, for generations, probably centuries, a common disease of the large cities, yet even in these there has been considerable actual increase during the last forty years; that while in smaller towns and in the villages districts it was formerly comparatively rare or even absent, yet in these during a similar period, the disease has made its appearance and spread widely.

It meant that tuberculosis in India was on an increase between 1890 and 1930. Important references are found from different reports submitted from time to time to Government Of India including the landmark report on tuberculosis by Dr. Lankaster (1912–1915) submitted in 1916 and by the report of Cummins ‘Tuberculosis in India’ submitted in 1931. It is evident from the above analyses that there was a dissimilar rate of prevalence of tuberculosis in India during the period under consideration (1890–1950). The variation can be analysed in terms of male-­ female, rural-urban, and above all across various provinces and amongst the people of various religions/faiths. The kind of statistical data that is required for spatio-­ temporal study is not available for the colonial period. However, the available statistics along with the personal experiences of the doctors does provide us with some understanding of the spread of tuberculosis in this country. There had been a remarkable degree of variation in the prevalence of consumption in different regions. There were some more or less isolated areas (the virgin lands) where tuberculosis appeared to be non-existent even as late as in 1915. Doctors from remote areas and other isolated regions were quite confident about the non-existence of the disease in the past and noted that they had watched the wide spread of disease with improved means of transportation and communication among different populous regions. Lankaster (1912) referred to Medical Officer of Gilgit and Chitral in the report, who provided one such evidence and observed that I have received information as to the total absence of tuberculosis among the indigenous inhabitants of those regions in spite of housing conditions most favourable to spread of disease. … cases were comparatively numerous amongst the Hindustanti troops and followers stationed there.

two medical missionary workers in Srinagar who stayed for more than for 25 years there spoke of extreme rarity of both pulmonary and surgical tuberculosis in their early days of work. Evidences from hospital records in this region supported their statements. Qayyam, an assistant political agent of Khyber, who had spent quite a considerable time of his life with Afridi tribes of Pathans of North West Frontier, was quoted as saying, ‘30 years ago consumption was unknown to them…now its spread in villages is a matter of anxiety’ (Lankaster 1912). Lankaster’s experience of 17 years (when he was posted in Peshawar) confirmed these kinds of observations and he added that there had been a great increase of the disease both in Peshawar city and in the districts around. Dease, M.D., who worked in Kumoan for 34 years during which the first 10 years he had worked as a medical officer and in-­ charge of Government and missionary hospitals, stated that, … in those years (when he was Medical Officer) tuberculosis was almost unknown in villages … in numerous cases Christian students sent for training to Bareilly become infected and had to return to their village home and that in many villages where before disease was unknown it is now comparatively common.

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Kennedy on the basis of 25  years of experience in the Chotanagpur region reported that he …was stuck by its extreme rarity in Chotanagpur. …watched the gradual and serious increase of consumption in Hazaribagh and the surrounding districts.… dating it the time when the climate began to have a reputation for being favourable for the treatment of disease. …influx of cases from Calcutta and other parts of Bengal and in time the whole county side became infected.

Cases of healthy highlands of the Deccan and the Central India plain were also similar to that of Hazaribagh and Ranchi in Chhotanagpur. Lankaster (1912) recognized this fact held that when the young people go from central India or the Deccan to work or study in Bombay or the Konkan, they encounter a definite measure of the risk of consumption. The reporting from different parts of the country suggested that there was increasing incidence of tuberculosis. Also, that ‘remote’ areas which remain away from the congested life of the towns and cities have lesser reporting of the disease, especially the hilly and western regions of the colonial India.

Tuberculosis in Towns and Remote Villages Urban areas were considered quite vulnerable especially Calcutta and Bombay, as the report of 1902 noted while comparing the prevalence in the two cities with that of English counties, …no doubt registration is bad in Calcutta and it is not good in Bombay, but there is no reason to suppose the phthisis is seriously over-stated, and if it is not, the phthisis mortality in Calcutta is as high as in an average English county, while that in Bombay is nearly five times as great as in London, where, in 1898, phthisis was more fatal than in any other English County.6

The data shows that the total mortality was higher in the Indian cities than of the British Capital (Table 2.1). The year for which data has been quoted and compared was the year when prevalence was one of the lowest. It was recorded that in England and Wales, the phthisis death rate was lowest in 1898 (13.17 per 10,000) except for the year 1896 when it was 13.07. Crombie’s report despite highlighting the nature of tuberculosis in India did mention the lesser prevalence of the disease in the Table 2.1  Total mortality and mortality from phthisis in London, Calcutta and Bombay Cities Year Total mortality Mortality from phthisis

London 1898 183.3 17.34

Calcutta 1901 377 12

Source: National Archive of India, New Delhi

 Home/Medical – A/September 1902/No. 99–100/NAI, New Delhi.

6

Bombay 755 83

Tuberculosis in Towns and Remote Villages

35

country and compared the figures for different cities with that of Germany – a country having a middle position in Europe with regard to the disease. Rarity of bovine tuberculosis in the country and the way of living of Indians that includes boiling of milk before use was cited as one reason for the lesser prevalence of the disease. S.L. Cummins (1932) quoted Dr. Ukil saying that to understand the epidemiology of tuberculosis in India We ought to remember that 90 percent of India’s population still reside in the villages and that urbanization, modern industrialization and the introduction of rapid transport facilities have been powerful factors in the diffusion of population during the last fifty or sixty years. Town populations have been reinforced by immigration from the villages, village populations have been infected by the workers returning from the town. The result is that both in the towns and outside them the commonest type of tuberculosis is that characteristics of a new disease.

The spread of tuberculosis from towns to villages and to remote areas have been regularly reported in formal and non-formal reports to the then government. One such report comes from the health department. In 1938, the director general of Health in India, Cuthbert Allan Sprawson, while writing for the British Journal of Tuberculosis, wrote Lately, however, there are signs that it is doing so, and tuberculosis is established endemically in several villages, particularly in Punjab and North-West Frontier Province. In addition to the ordinary rural population, who entre freely into Indian cities for the purpose of work and trade, there are various more primitive folk who live either on the outskirts of India or in more remote areas and who are often recruited into Government military or civil services. There folk are much more susceptible to tuberculosis than the ordinary Indian rural population and their reaction to infection is such as we associate with a primitive people. The most striking example of such people in India is the Gurkhas, who show in comparison with other soldiers of Indian Army a greatly increased susceptibility to and mortality from tuberculosis. Similarly, it has been observed that the Pathans are more susceptible than ordinary Indian rural folk. (Health 1938)

A report based on about 300 individuals indicated a different kind of incidence amongst those who got exposed by some means. It was noted that children are relatively less vulnerable to bacillus compared to adults. Also, towns were found more vulnerable compared to villages. In towns, about 45% were found to be infected, while in the villages, it was about 34%. Villages no more remained ‘virgin soil’ though did report a lesser incidence rate.

Table 2.2  Tuberculin survey of 3015 individuals (in percentage) Community Hindus Indian Christians Muslims Total

Total Adults 38.16 34.30 63.73 40.29

Children 9.46 10.54 22.37 11.09

Towns Adults 43.21 35.53 59.10 45.42

Children 11.33 10.56 21.88 12.47

Source: Health 1938, 37-9/8-H, National Archive of India (NAI), Delhi

Villages Adults 31.32 33.33 71.10 34.69

Children 6.75 10.53 23.21 9.35

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It is evident from Table 2.2 that Muslims across towns and villages have higher incidence compared to Hindus and Christians. When we compare incidence amongst children, the lowest is reported amongst Hindus of rural areas. There is significant variation among Hindu children from towns and villages, whereas for Muslims children, there is very little difference and for Christian children, it is almost same for rural and urban areas. This can be argued as evidences were found elsewhere that Muslims were relatively poorer compared to the rest of the population. Also, Hindus children reported lesser incidence compared to Christians owing to one factor, i.e. use of raw milk compared to boil milk by Hindus. Interestingly, for the Muslims, the worst incidences were reported from rural areas and not from the towns as against Hindus and Christians in whose case towns (city life) were considered the cause of tuberculosis.

 uberculosis in Specific Geographies: Cantonments T and Prisons There was a general absence of mortality and morbidity records in India. Traditionally, Hindus believed in ‘cyclic time’ and ‘rebirth’. By this understanding, the present life is as useless or valuable as the nature of work one does. The prevailing noting of ‘shareer’ (body) and ‘aatma’ (soul) contributed in the understanding that human body is not the prime of human life; it is the soul, whose health will grant salvation and not of the care of the ‘body’. This also means that ritualistically, morbidity statistics were not kept for record. The lack of record also meant little knowledge about the prevailing disease or the nature of the disease including the mortality caused by a particular disease. The Muslim did have the practice of keeping record at a burial, however; the nature of record was insufficient to ascertain the causes of death for a particular case. The confinement of some kind also meant monitoring of some kind. That being, the principle cantonments and prisons emerged out as settlements where ‘disease surveillance’ was effective along with other types of regimentation and surveillances. To understand the spatial variation with regard to the prevalence of tuberculosis, available statistics from jails of different parts of the British Empire has been taken and analysed in this section. Jail statistics usually had records of malaria, dysentery, diarrhoea, tubercle of the lungs, pneumonia and other respiratory diseases and tubercle of lungs. The report of 1903 which was submitted to the director general of Indian Medical Services for further transmission, assessment and action primarily for space allotment means to determine the number of prisoners show that until 1896, in the record, tubercle of lungs is not recorded separately. And it was clubbed along with other respiratory diseases including pneumonia (Table 2.3). Statistics from Port Blair Jail’s report for tuberculosis indicated a systematic growth in the prevalence rate of tuberculosis during the period for which the data is presented here. In a short span of 6  years, the death rate from tuberculosis grew

Tuberculosis in Specific Geographies: Cantonments and Prisons

37

Table 2.3  Admission and death rate per mille of the average annual strength (1888–1902) Year 1888–1895 1896 1897 1898 1899 1900 1901 1902

Average annual strength 10,520 10,590 10,890 11,293 11,580 12,183 12,907

Admission – 6.5 5.3 7.2 10.3 8.6 10.8 17.4

Death – 3.8 4.53 5.69 7.62 5.7 6.57 9.61

Source: Home, Port Blair – A, 19–21/1903, NAI

from 3.8 to 9.3, while admission rate grew from 6.5 to 17.4. It is to be noted here that all these studies were carried out in the background of the 1899 Crombie report of phthisis that suggested that slowly and steadily increase across the country. Analogous advice was given in the annual meeting of British Congress on tuberculosis for the ‘Prevention of Consumptive in London’ in 1902 where statistics from India was compared with that of Britain. The jail (Port Blair) statistics, which helped in propagating the static theory of disease, also suggested otherwise in different reports. The report of Captain Waters on the prevalence of malaria and phthisis in Port Blair Jail stated something similar, Pulmonary diseases in general and pulmonary phthisis in particular are maladies … and an increased mortality from these causes demanded some explanations. In port Blair both the general respiratory death rate and phthisis rate have much increased of late years, the death … from phthisis is five times those of 1894, or in other words, in 1894 one death in 12 was due to pulmonary phthisis whilst in 1902 the phthisis deaths were 1 in 4 of the total.7

Another monitored population during the colonial period was that of the armed forces. Like jail, the Army tend to have induction of qualified personnel across geographies of the country including Burma and Nepal. The jail statistics in fact is better indicative of disease situation compared to that of the statistics from the cantonment. The reason is that in the Army, relatively healthy men were being inducted, while in jail, it is expected a kind of representation of the population. The advantage of the statistics from the Army was that it captured prevalence/admission/incidence in a manner that allows us to analyse the incidence across religious and ethnic background (Table 2.4). Some of the cantonments had dedicated community-/ethnicity-based study of disease occurrence. The data from various regiments, which were composed almost exclusively of certain races or castes, show that Dogras were more prone to infection than any other community followed by Gurkhas. In most cases, the higher vulnerability of these otherwise ‘strong’ men was attributed to their previous residence in the ‘virgin land’ with regard to tuberculous infections. The previous settlement has no reported cases of tuberculosis, and that means these men had no  Home/P.B.A, November 1903, No. 19–21, NAI, New Delhi.

7

38

2  Spatiality of Tuberculosis

Table 2.4  Reported phthisis among different regiments of the British Army for the year 1896

Regiment according to caste/religion Sikhs Rajput Mussalmans Gurkhas Dogras Dogras and Sikhs

Admission rate to phthisis 25.6 26.6 41.1 57.8 66.5 40.5

Source: National Archive of India

Table 2.5  Reported phthisis among different commands of the British Army for the year 1896 Commands of the British Army in India Bengal Punjab Madras Bombay

Admission rate to phthisis 37 33 16 15

Source: National Archive of India, New Delhi

exposure to the bacillus and it meant the lack of bodily resistance against tuberculosis. The spatial variation with regard to the prevalence of tuberculosis among troops showed that Bengal was more vulnerable than other command areas (Table 2.5). Interestingly, vulnerability of Punjab was next to Bengal though Sikhs had the least risk of infection as depicted in the earlier Table 2.4. Even this scanty information suggests variation across communities in the armed forces under the British army. Available statistics also can be said to be an indication of the fact that tuberculosis was more prevalent among the prisoners than among troops. The relative prevalence of tuberculosis among different group of population is shown in Table 2.6, which indicates a slightly higher prevalence among native troops compared to European troops but a significantly higher for the prisoners. By 1900, almost half of those lodged in different jails reported and got admitted for tubercle of lungs. During the pre-independence period, the morbidity statistics for the general population was hardly available, and one had to rely either on reports or available statistics for different groups which can be taken as representative under defined conditions with known limitation. The death rate for the year 1896 among European soldiers serving in India has been reported as 86 per 10,000, while among women, the death rate was higher and noticed as 120 per 10,000 (Crombie 1899). Reports from the general population also suggest a similar situation with regard to the higher prevalence among women. Lankaster (1912) in his report refers to the higher prevalence among women in Calcutta as the female death rate from phthisis was 33 per 10,000, while the male rate was only 22. Further, the report said that the phthisis death rate for Mohammedan women was 58 per 10,000 as against 30 for Hindus.

39

Tuberculosis in Specific Geographies: Cantonments and Prisons Table 2.6  Relative prevalence of lung tuberculosis per 10,000 of population Group Tubercle death

1896 1900

European troops 6.4 6.4

Native troops 6.5 8.6

Prisoners 30.7 51.6

Source: Home/Med-A/October 1899, No.95 and Home/Medical – A/September 1902/No. 99–100, National Archive of India Table 2.7  Deaths from phthisis during the year 1913 Community Death from phthisis

Mohammedans Male Females 150 299

Hindus Male 59

Females 86

Others Male 15

Females 21

Source: National Archive of India

A similar situation was reported from Lahore, wherein each category, the female death rate from phthisis was higher (Table 2.7). Later reports of Cummins in 1932 too reported a similar situation. Intercommunity comparisons suggest that ‘Eurasians are more affected than any other class, and next to them are low-class Mohammedans’ (Crombie 1899). Comparison among different groups within one set of economic strata can be a better representative for the intercommunity differences in the prevalence. It is evident from the table that while mortality rate from tuberculosis remained almost static for the European troops, it increased almost by 50% in the case of native troops and nearly 100% in the case of prisoners. The increase in case of prisoners is a reflection of an increase of the disease in the general population which is also supported by the data from the statistics of native troops. Jail statistics is preferred over military data as recruitment in the military was done only after a test available at that particular point of time.8 But admission to jails was from the general population. These statistics as well as some of the British reports do suggest that jail statistics are exaggerated as poor people who were reported for theft were put in the jails and their initial condition led them to infections in the jail. Still, the economic condition of the country was such that people did not have much to eat and were compelled to steal. Had well-to-do involved in capital accumulation through unfair means, this argument might not have been given by the machinery that was responsible for maintaining law and order in the country. Lt. Colonel Braide, I.G. Prison of Punjab, mentioned in his report of 1913 when refuting Foster’s argument that jails were favourable places for tuberculous infection. He noted that ‘the increase of the disease amongst prisoners as a mere reflection of the increase in the free population and it was 45% for prisoners and 42% for general population’.9

8  Tuberculin test of Gurkhas, details and weight, and body measurement in the earlier period were to ascertain the physical conditions of the new entrants. Initially, deteriorating physical conditions were a sign of early phthisis infection and was true to certain extent. 9  Home/Jail- B/1913, Number 25.

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2  Spatiality of Tuberculosis

Table 2.8  Ratio of death per 10,000 of the population from malaria, dysentery, tubercle and pneumonia and from all causes of death during 1899 Total of Provinces Malaria Dysentery Tubercle Pneumonia the four Madras 12.2 13.4 25.0 11.0 61.6 Bombay 14.0 2.6 25.2 39 104.2 Bengal 20.0 5.9 47.5 28 154.5 NW province 12 5.2 30.2 44 138.1 and Oudh Punjab 8.3 25.7 31.5 52.2 117.7 Burma 3.3 45.9 32.8 13.8 100.8 Assam 100.6 53.7 13.4 33.5 201.2 Central 20.9 41.9 26.3 31.5 120.6 Province Berar 16.9 8.4 16.9 16.9 59.1

Total of all causes 167 259 232 218

% of major causes to all deaths 38.99 40.23 66.59 63.39

191.2 184.4 496.3 243.9

60.36 54.66 40.54 49.44

135.2

43.71

Source: Home/Jail- A/November 1900. No. 20–37/NAI

The available statistics (Table 2.8) suggests that while a higher death rate was reported from Burma and Assam, a higher prevalence of tuberculosis was noticed in Bengal (47.5). This was followed by Burma (32.8), Punjab (31.2) and North-West province (30.2). In this report, Bombay and Madras (25 per mille) come after Central Province where slightly higher prevalence (26.3 per mille) had been reported. Crombie’s report for the year 1899 suggests that in the North West province where data for verified deaths were available only 40 deaths out of 15,116 occurred due to tubercle of lungs (Table 2.8). This comes out to be around 26 per 10,000, which is not in contradiction with the jail statistics of Waters’s report. Importantly enough Oudh is included in the Water’s report and that might have affected the data and a higher prevalence of tuberculosis was reported. This comparison provides some kind of validity to the jail statistics which is presented here as representative for the general population. Besides, there were other kinds of statistics, too, for various regions and for different periods. Though the colonial period is cursed for the scanty data on disease incidence, prevalence, mortality from a particular disease for the general population, yet there is statistics from jails and cantonments, which can be taken as indicator for the pattern and trend of disease. Table 2.9 in this chapter presents a comparison of quinquennial data on death from tuberculosis from jails located in different parts of the country. It is noticed from the Table 2.9 that there is a general progressive rise in death reported due to tuberculosis. However, when compared by the death caused by Anaemia and Debility, it is noted that death due to these causes has declined over the same period. If we see the details across the provinces, the trend remained comparable. It is clear that the increase over the period of time is partially attributed to careful clinical and post mortem examination in the elucidation of disease causes. The doctors in the report noted that all cases of anaemia and debility are not tubercle cases, but it cannot be ruled out that Indian jails do report significant numbers of

Conclusions

41

Table 2.9  Ratio of death from tubercle in jails during the four quinquenina 1880–1899 Province Burma Assam Bengal North-Western Province and Oudh Punjab Bombay Berar Central provinces Madras All India (Tubercule) All India (Anaemia and debility)

1880–84 1.47 0.64 4.14 1.84 1.27 1.72 1.09 0.9 1.6 1.6 3.01

1885–89 3.18 1.49 3.39 1.81 1.73 1.28 1.37 1.36 1.88 1.94 2.75

1890–94 2.51 0.17 2.72 1.8 1.76 0.69 0.77 0.58 1.46 1.38 1.75

1895–99 3.51 1.4 3.41 2.58 2.41 2.57 1.32 3.73 3.22 2.68 1.88

Source: Home – Jail- A/November, 1900. No. 20–37/NAI

death due to tubercle across regions of the territory under the control of the British Empire. The empire and its economic and military might go up and down; however, the disease of tuberculosis continues to spread from town and cities to villages and remote corners of the country.

Conclusions The colonial rule changed the geography of India. This also meant that economies, the pattern of livelihood, the resource use, the access to opportunities and larger ecology get shaped based on the levels of political intervention by the British Empire. The change in activities like agriculture and crafts, which were located in villages to industry and trade, which started to be concentrated in the crowded cities, did have an impact on the ‘disease ecology’ in the country as well. Disease like plague and tuberculosis became more common than ever before. Every report to the then government from across India cautions about the fact that cases of tuberculosis were on the rise, which warranted intervention. Owing to the need of the British Army and European families living in India, sanatorium came up which in a way contributed to further expansion of the disease and creation of disease network through Indian personnel in British Army and the people serving the sanatorium. There was also increased visibility of combative measures along with high-echoed debates at various levels. The obvious debate regarding tuberculosis during the colonial period remained centred around three themes, namely, ‘question of severity’, ‘the causative factors’ and ‘the possible combative measures’. The authenticity and reliability of data were thoroughly suspected by the professionals and the government representatives equally. However, there were little efforts to collect the

42

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data, which could be reliable and comparable across the regions that were under the control of the British Empire.

References Akhtar, R. (1992). Geography of Health in India: Progress and trend. National Geographic Journal of India, 38, 98. Arnold, D. (1989). Imperial medicine and indigenous societies. Delhi: OUP. Barret, F.  A. (1993). A medical geographical anniversary. Social Science and Medicine, 37(6), 701–710. Black, D. A. K. (1968). The logic of medicine (p. 5). Edinburgh: Oliver and Boyd. Buchanan, D. R. (2000). An ethics for health promotion: Rethinking the source of human well-­ being. New York: OUP. Chevers, N. (1886). Disease of India. London: J & A Churchill. Crombie. (1899). Home/Med-A/October 1899, No.95. Cumins, C. L. (1932). Health, no. 79/32 – H (p. 1932). New Delhi: National Archive of India (NAI). Ebrahim, S., Ferrie, J. E., & Smith, D. G. (2016). The future of epidemiology: Methods or matter? International Journal of Epidemiology, 45(6), 1699–1716. https://doi.org/10.1093/ije/dyx032. Fairchild, A. L., & Oppenheimer, G. M. (1998). Public health then and now: Public health nihilism vs pragmatism – History, politics and the control of tuberculosis. American Journal of Public Heath, 88(7), 1105–1117. Fayrer, J. (1882). Climate and fever in India. London: J & A Churchill. First Five Year Plan. (1951–56). Government of India. Health, No. 79/32 – H, 1932. New Delhi: National Archive of India (NAI). Hesterlow, A. M. V. (1929). Quoted in R. Akhtar (1992) op. cit. Home. (1916). Home/Sany-A, October 1916, No. 29–51, NAI, New Delhi. Home Department. (1912). Home/Medical –A/May 1912/No. 40–64, NAI, New Delhi. Home/Jail- B/1913, Number 25. Home/Medical-A/No. 95/October 1899, NAI, New Delhi. Home/Medical – A/September 1902/No. 99–100, NAI, New Delhi. Home/P.B. A, November 1903, No. 19–21, NAI, New Delhi. Howe, G. M. (1968). National atlas of disease mortality in United Kingdom. London: Nelson. Lankaster, A. (1912). Report on tuberculosis in India. New Delhi: National Archive of India. Learmonth, A. T. A. (1958). Medical geography in Indo-Pakistan: A study of twenty years data for the former British India. Indian Geographical Journal, 33(1–2). Learmonth, A. T. A. (1961). Medical geography of India and Pakistan. The Geographical Journal, 127(1), 10–26. Learmonth, A. (1988). Disease ecology: An introduction. Oxford: Blackwell. Lilienfeld, A. M. (1976). Foundations of epidemiology. New York: OUP. Macnamara, F. N. (1880). Climate and medical topography in their relation to the disease distribution of the Himalayan and Sub-Himalayan district of British India. London: Longmans. Meade, M. S. (1977). Medical geography as human ecology: The dimension of population movement. Geographical Review, 64(4). Moore, W. (1880). Tropical climate and Indian disease. London: J & A Churchill. Muthu, A.  C. (1922). Pulmonary tuberculosis: Its Etiology and treatment. Tindall and Cox: Bailliere. Najman, J. M. (1993). Health and poverty: Past, present and prospects for the future. Social Science and Medicine, 36(2), 157–166. Pavlovsky, E. N. (1962) cited in M.S. Meade (1977). Medical geography as human ecology: The dimension of population movement. Geographical Review, 64(4), 382.

References

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Pedersen, D. (1996). Disease ecology at a crossroad: Man-made environments, human rights and perpetual development utopias. Social Science and Medicine, 43(5), 745–758. Roundy, R. W. (1976). Altitudinal mobility and disease hazard for Ethiopian population. Economic Geography, 52, 103–115. Sanitary Commission. (1902). Home/Medical-A/No. 99–100/September 1902, NAI, New Delhi. Sprawson, C. A. (1938). Peculiarities of the tuberculosis problem in India. The British Journal of Tuberculosis, 128–134. Taken from Health, No. 37-9/38-H, 1938, NAI, New Delhi. Tenth Five Year Plan. (2002–07). Government of India. Watts, S. (1999). Epidemics and history: Disease, power and imperialism. New Heaven: Yale University Press.

Chapter 3

Changing Geographies of Tuberculosis

Indian state after independence tried to assess the magnitude of the disease of tuberculosis. Different kinds of studies based on estimation were used to understand the pattern. The Bhore Committee in 1946 came out with an estimate that there were about 2.5  million patients suffering from tuberculosis and required treatment in India. At the beginning of the twenty-first century, Directorate General of Health Services (DGHS) showed that about 40% of the population is tested positive with tubercle bacillus and more than 20,000 people become infected every day and about 5000 develop the disease (MoHFW 2004). The latest estimate suggests that tuberculosis kills an estimated 480,000 Indians every year and more than 1400 every day. Tuberculosis is one of the world’s most deadly diseases, killing three people every minute (Purty 2018). Globally, each year 9 million people develop the disease, and 1.5  million dies from the disease. There are wide variations in the prevalence of disease and in the pattern of mortality from the disease across different parts of the country. The skewness of pattern also varies depending upon the scale that is chosen. On the basis of limited available data, the present chapter deals with the pattern and trend of tuberculosis in India.

Morbidity and Mortality Two important indicators, namely, mortality1 and morbidity2, provide the basic input for the study of the pattern of any disease. Mortality is one criterion used for judging the seriousness of the problem of different kinds of diseases in a country. 1  Mortality rate conventionally is the ratio of the number of deaths of in a year to the number of the total population per 1000 during that year. Symbolically, mortality rate = {D/B} * 1000 where D = number of deaths in a year, B = number of the total population during the same period. 2  Morbidity rate conventionally is the ratio of the number of reported illness of in a year to the number of the total population per 1000 during that year. Symbolically, morbidity rate = {M/B} *

© Springer Nature Switzerland AG 2021 B. K. Choudhary, Ecology of Tuberculosis in India, Global Perspectives on Health Geography, https://doi.org/10.1007/978-3-030-64034-7_3

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3  Changing Geographies of Tuberculosis

India also requires information on this aspect to study the gravity of tuberculosis and the number of deaths occurring due to it. The annual report on medically certified deaths in the urban areas is published, and Registrar General of India publishes the account of registered deaths in the rural areas separately on a sample basis (ICMR 1959). Reliability of this kind of data is always under critique. Various reports have highlighted that in India, mortality cannot be taken as a reliable index for judging the menace of tuberculosis or any other disease, because of two reasons. First is that it is very difficult to ascertain the actual cause of death in India especially in the rural areas where healthcare infrastructure is not sufficient, and second is that the majority of deaths in the country remain unrecorded. Morbidity is another criterion, which can be used for assessing the prevalence of tuberculosis in India. Facilities for accurate diagnosis and for the notification of the diagnosed cases still do not exist in many parts of the country. There is information about the cases reported to the hospitals or to the doctors for the disease, self-­ revealed information or estimation on the basis of either of the two. Some investigations on a limited population were undertaken during the last decade of British India and in the early years of independent India. The Tuberculosis Survey Report of the Indian Council of Medical Research (ICMR) has cited some of these studies that estimated the morbidity from tuberculosis and has noted the morbidity rate between 1% and 7%. In the year 1938–1939, Benjamin during a survey of a population of 30,000 in a suburb of Madras found the morbidity rate as 2.3%. Lal in another survey in the urban area of Serampore showed morbidity as 7%. Aspin, in 1944 based on 6000 persons using the miniature x-ray technique, showed the morbidity as 1% among Gurkha recruits and 3.4% among labour units. In the rural areas, probably the first survey was conducted in 175 villages around Madanapalle (ICMR 1959). Based on this, Frimodt-Moller demonstrated existing morbidity from tuberculosis as 0.42%. The above data shows the variability in the demonstrated morbidity rate in different regions of the country. Not only it can be taken as an indication of the regional variations, but also it can be an indicator of the tentativeness in the estimations. Due to the lack of follow-up surveys in the same regions, which would have provided the change in morbidity during various stages of the campaign against the disease, the temporal analysis of morbidity pattern at the regional basis is not possible. The Bhore Committee (1946) at the dawn of independence found that the major diseases, which led to deaths, included cholera (2.4), smallpox (1.1), plague (0.5), fevers (58.4), dysentery (4.2), respiratory diseases (7.6) and others (25.8).3 First Five Year Plan (1951–1956) of independent India rightly considered tuberculosis as a major public health problem next only to malaria. Although accurate and systematic data was not available, the First Five Year Plan estimated that about 5 lakh 1000 where M  =  number of morbid in a year, B  =  number of the total population during the same period. 3  The figures in bracket indicate percentage of deaths by that particular disease to total deaths as mentioned in the Bhore Committee Report. Ministry of Health (1946) ‘Report of Health Survey and Development Committee’, Chairman: Sir Joseph Bhore, Government of India, New Delhi.

Sources of Reporting Deaths

47

deaths occurred every year and about 2.5 million people suffered from the active form of the disease. The Tenth Plan document estimated the sputum positive prevalence of tuberculosis between 4 per 1000 and 5 per 1000 population approximately. It also accepts the fact that about 40% of the population is suffering from the infection. As many as 4,023,000 estimated cases of deaths along with 27,090,000 new cases of tuberculosis have been reported in Annual TB Report of 2018 by this disease (DGHS 2018).

Sources of Reporting Deaths A number of sources like the Vital Statistics of India, the Health Information of India, the twenty-eighth (28th) and fifty-sixth (56th) round of National Sample Survey (NSS) and the National Family and Health Survey (NFHS) have been used to understand the spatial and temporal variations of the morbidity pattern of the disease throughout the country. Questions asked in parliament regarding tuberculosis and the data provided to these questions have also been used to understand the trend. To analyse the temporal variation from 1961 to 2003 for the major states of India, Vital Statistics and Health Information have been used; Parliamentary questions have been used for the period 2009–2012. The prevalence is looked upon from two points of view: first, the number of registered deaths and second, the reported deaths in a particular year for a particular state. There is limitation of information on the registered death. It is surprising that after so much attention on different aspects of surveillance, India has so far failed to create a reliable mortality database. The NSS data is available only at all India level for the 28th round and is available for state level for the 56th round. Information about the correlates of the disease and treatment-seeking behaviour is available from the 56th round of the NSS, though only good for hospitalization studies. Tuberculosis now is treated at home only, and therefore, the nature of data in NSS seems unsuitable for understanding the pattern of the disease. The NFHS data has been used for the analysis of the prevalence of deaths in 1998–1999 and again in 2015–2016 across different states of India. It has also been used to depict the frequency of deaths in each of the 13 ecological regions and its sub-regions. National Family Health Survey has collected information about the prevalence of the disease in different parts of India on a sample basis at a desegregated level. Analysis of the existing pattern of disease in India or preparation of the disease map for the country is also almost impossible at a desegregated level because complete information on different diseases even at the state level is not available. The primary goal of NFHS data collection is not to estimate the prevalence of a particular disease or a combination of diseases; therefore the analysis is also only indicative. A proper dedicated disease surveillance system is required for analysis of the disease and its correlates across different geographies in India. Data is available for several years for registered and reported deaths from various diseases at the state level and at all India levels, that too from different sources. In the analysis below, I have used SRS data, Health Statistics data and also un-starred

48

3  Changing Geographies of Tuberculosis

questions in the LokSabha (lower house of the Indian Parliament) to bring to light the pattern of deaths. However, this also shows beyond doubt the absence of importance that is assigned to the disease. The campaign against tuberculosis is bound to be rhetorical unless we have a clear picture of the prevalence of the disease and the correlates that might be causing the disease in a population. However, this does provide some kind of information that can be useful to understand the trend of the disease across states in India.

Registered and Reported Deaths This section explains the trend of prevalence of tuberculosis in India at the states level. In general, mortality is expressed as the ratio of the number of deaths in a year to the number of total population per 1000 during that year. Symbolically, mortality rate = {(D/B) * 1000}, where D = number of deaths in a year and B = number of total population. However, since tuberculosis is a rare disease and the prevalence is very low, this analysis has used mortality per lakh population; mortality rate = {(D/B) * 1, 00,000}, where D = number of deaths in a year and B = number of the total population. For reported and registered deaths, the same formula is used. Prevalence or morbidity has been calculated per lakh population. The data on registered deaths from tuberculosis is available only for the period from 1971 to 1994 and has been used; though it is not available for all the states between 1971 and 1982, the data indicates towards the prevailing awareness of the society about reporting the disease. It is noticed that Delhi has the highest share of registered deaths. The proportional death from tuberculosis has shown a continuously increasing trend from 11.21 (1971) to 24.23 (1982), to 37.67 (1991), to 41.48 (1993), to 43.94 (1994) deaths per lakh of population (Table 3.1). This can be explained by the fact that it has better medical facilities and a huge floating population. Besides, the state of Delhi constitutes a larger urban population. It is noted that in the urban areas especially in the larger cities like Delhi, declaration of the cause of death is necessary to perform last rites. Even if the body is taken out of the city, a death certificate is required. A steep rise in registered deaths from 2  in 1982 and 11.27  in 1991 to 13.08 in 1993 is noticed at the national level. Gujarat, Haryana, Himachal Pradesh, Jammu and Kashmir, Kerala and Meghalaya are some of the states, which show a similar trend. The increase in the number of registered deaths can be taken as a sign of improvement in the registration system. While the states of Arunachal Pradesh, Madhya Pradesh and Maharashtra show a steady decline in the cases of registered deaths over the years, it is not certain whether this decline is real or it is due to non-­ registration of certified deaths in these states. It is not a happy and desirable situation that India still is not having its priority on having a reliable data collection and data dissemination system on registered deaths, and that is the reason, most of the analyses in India remain based on reported deaths and reported morbidity. On the basis of the analysis of data computed from the Vital Statistics of India, the Health Information of India and the Parliamentary questions, the number of

Registered and Reported Deaths

49

Table 3.1  Mortality from tuberculosis across states (registered deaths per lakh) States Andhra Pradesh Arunachal Pradesh Assam Bihar Goa Gujarat Haryana Himachal Pradesh Jammu And Kashmir Karnataka Kerala Madhya Pradesh Maharashtra Manipur Meghalaya Mizoram Nagaland Orissa Punjab Rajasthan Tamil Nadu Tripura West Bengal Uttar Pradesh Delhi India

1971 0.75

1982 1.65

1991 0.41

1993 0.48

1994 0.30

4.63

8.10

5.32

7.73 23.85 23.61 6.88 3.23

26.84 29.32 26.66 7.82 8.10

11.43 30.86 28.64 10.43 14.31

16.40 0.84

13.00 12.48 2.58 24.30 2.83

14.29 10.43 2.43 24.90 2.88

15.45 10.15 2.22 22.86 5.99

3.61 1.81

11.82 16.35

8.52

10.50

8.99

12.31

10.97

28.85

28.63

28.99

37.67 11.27

41.48 13.08

43.94 11.21

0.73

1.18 0.27

0.05 11.32

1.50

11.21

24.23 2.00

Source: Vital Statistics of India, 1971, 1982, 1991, 1993, 1994 Note: population figures have been used for the census years

reported deaths in the country shows a decreasing trend from 11.1 per lakh of population in 1991 to 0.87 per lakh of population in 1994 to 0.82 per lakh of population in 2003 (Table 3.2). When we look at data from 2009 to 2012 based on the answers provided in LokShabha, the reported death is around 5 per lakh. One look at the data reveals that reported cases for the years after 1991 are not comparable to the reported cases of 1961. However, the presentation of data tells us about the unsuitability of information for comparing the mortality from tuberculosis over a period of time. Majority of the states in India show a declining trend for the reported deaths from tuberculosis for the period (1991–2003). Some of the states have reported higher death rates from tuberculosis over the period between 1991 and 2003, like Andhra Pradesh (0.19  in 1991 and 1.46  in 2003), Arunachal Pradesh (1.5 and 2.7), Goa (2.99 and 4.54), and Uttar Pradesh (0.39 and 1.51). Himachal Pradesh and Karnataka are the other two states which show an increasing trend during the 1990s (Table 3.2). Goa presents an interesting picture and has reported a sharp increase in the reported

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Table 3.2  Mortality from tuberculosis across various states (reported deaths) per lakh population States 1971 Andhra Pradesh Arunachal Pradesh 0.75 Assam Bihar Goa Gujarat Haryana 1.18 Himachal Pradesh 0.27 Jammu and Kashmir Karnataka Kerala Madhya Pradesh Maharashtra 0.05 Manipur 11.32 Meghalaya Mizoram Nagaland Orissa Punjab Rajasthan Tamil Nadu 1.5 Tripura West Bengal Uttar Pradesh New Delhi 11.21 Sikkim Chhattisgarh Uttaranchal Jharkhand India

1982

1991

1.65

0.41 4.63

0.73 7.73 23.85 23.61 6.88 3.23

16.4 0.84

13 12.48 2.58 24.3 2.83

3.61 1.81

11.82 16.35 8.99 28.85

24.23 37.67

2

11.27

1995 2000 2003 2009 2010 2011 2012 0.11 0.20 1.46 7.31 6.96 6.34 6.36 0.35 2.57 5.86 4.56 5.71 5.18 0.54 5.76 5.39 5.09 5.33 2.32 2.17 1.90 2.15 0.77 7.44 4.54 4.71 6.01 11.52 4.13 0.30 0.20 0.24 7.27 7.05 6.54 6.37 1.48 1.43 1.13 7.12 6.00 5.52 6.38 5.28 4.08 2.48 8.47 8.38 9.19 7.60 0.01 0.01 3.59 3.92 3.73 2.84 2.06 2.21 1.86 8.39 8.43 7.65 7.57 0.63 0.54 0.55 3.39 3.27 3.00 3.46 0.03 0.01 0.16 4.46 4.27 5.62 4.04 1.08 1.02 0.84 7.11 7.07 5.99 6.73 1.14 0.38 5.81 4.83 6.14 2.91 0.39 3.27 2.04 10.86 7.68 5.97 8.03 1.16 1.16 2.36 9.17 9.87 6.97 7.78 0.08 0.25 4.28 3.51 6.82 4.00 0.63 1.02 0.37 6.31 6.19 5.78 5.85 0.47 0.11 0.61 6.07 6.50 6.77 6.88 0.22 0.70 0.81 6.52 6.57 6.02 5.21 0.54 0.36 0.24 5.97 5.94 5.26 5.70 4.22 3.81 7.95 4.10 0.37 0.12 0.07 5.99 5.57 5.14 5.59 0.94 1.60 1.51 4.84 4.05 4.12 3.85 17.70 11.12 15.40 8.14 7.62 8.97 6.54 14.55 10.91 26.99 13.25 4.04 3.82 3.87 4.41 5.06 4.94 8.14 5.47 4.24 3.94 4.34 4.20 0.87 0.89 0.82 5.71 5.42 5.23 5.12

Note: population figures have been used for the census years Source: vital statistics of India, 1971, 1982, 1991, 1994 Health Information of India, 1995, 2000, 2003 LokSabhaUnstarred question: 2009, 2010, 2011, 2012

deaths from tuberculosis from 2.99 per lakh in 1991 to 7.44 per lakh in 2001. After 2001 there is a systematic decline in reported deaths, and in 2003, reported death from the disease was 4.54 per lakh of population, which is higher than in 1991. When a record of reported deaths in the year 1961 is taken into account, only one state in India shows a consistency in the trend. The data in Delhi shows a systematic decline from 41.86 deaths per lakh of population to 15.4 deaths per lakh of population in 2003 except for 2001 and 2003, when there was a slight increase in proportional deaths in the previous years. Interestingly, Delhi has reported the maximum

Registered and Reported Deaths

51

deaths per lakh of population from tuberculosis among all the states for all the years, 20.6 (1991), 19.22 (1994), 17.7 (1995), 11.12 (2000) and 15.4 (2003). The simple explanation for this is that Delhi has a better facility for recording the deaths, which leads to majority of the cases being reported. The situation in other parts of India is not better in terms of health facilities, and an adequate facility for reporting of deaths is also not available. The other reason could be that Delhi being the capital city has better medical facilities available than anywhere else in the country. It is interesting to note that during 2009 and 2012, reported deaths from tuberculosis in Delhi have declined and that can be attributed to the success of RNTCP, which has to some extent contained deaths from tuberculosis (Table 3.2). Another interesting case is that of Punjab, where there is increase in reported death per lakh from tuberculosis, though marginal increase. The prime reason for this is the growing HIV infection and other associated cause that make tuberculosis non-curable. So, people from other parts of the country come here to avail this facility, and some die here. In 1961, Gujarat reported maximum deaths per lakh of population (51.76) followed by Maharashtra (46.14), Delhi (41.86) and Karnataka (30.34). The least proportion of deaths occurred in Bihar (0.26). However, this does not present a true picture; rather, it is a simple case of under-reporting. This notion gets strengthened, since there is no data available for the period between 1995 and 2003 for Bihar on the basis of which the extent of underreporting can be ascertained. The mixed trend comprising a rise in some years and fall in other years in different states explains the non-reliability of mortality data. It, therefore, poses a serious question or raises a requirement for a rigorous explanation for the fluctuation in the death rate. Between 2009 and 2012 the pattern of reported death indicates higher mortality from tuberculosis in North-eastern states including Sikkim. Manipur and Tripura are two states which have lower reported deaths from tuberculosis compared to the national average, while Arunachal Pradesh is very close to the national average. The minimum reported death is from the state of Bihar, which is indicative of poor recording rather than better health facilities. Based on this, even the states from North-eastern India, which show lower reported death, can have similar realities. However, unlike the 1990s, Delhi is not reporting the highest death rate in this period; Sikkim, Meghalaya and Mizoram are the top three states reporting higher deaths which are about 10 per l00,000. The reliability of this data to understand tread in death is doubtful; we can understand the pattern of death from tuberculosis. The problem of reliability of data remains even in analysing pattern, because certain states have a better system of reporting compared to other states. To deal with this, in the next section (Table 3.3) proportion of death from tuberculosis out of reported cases is presented. When reported death from tuberculosis is compared to the total reported cases, it is noticed that proportion of deaths from the disease has increased over time. The increase is noticed at all India level as well as in the majority of the states (Table 3.3). Gujarat and Uttar Pradesh are the only states that have shown a decrease in the proportion of deaths from tuberculosis over a period of time. All other states apart from the North-eastern states, Himachal Pradesh and Delhi have recorded a lower proportion of deaths from tuberculosis than the national average (1.09%). Delhi has

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Table 3.3  Percentage of reported deaths from tuberculosis to total reported cases States Andhra Pradesh Arunachal Pradesh Assam Bihar Goa Gujarat Haryana Himachal Pradesh Jammu and Kashmir Karnataka Kerala Madhya Pradesh Maharashtra Manipur Meghalaya Mizoram Nagaland Orissa Punjab Rajasthan Tamil Nadu Tripura Uttar Pradesh West Bengal Delhi India

Percentage of deaths from tuberculosis to total cases 1991 1994 1995 2000 2001 2003 2012 2013 0.58 0.63 0.47 0.65 0.72 0.72 1.20 1.52 0.82 0.85 0.25 3.24 0.59 0.64 0.52 0.61 0.69 6.58 0.17 0.65 0.34 1.26 0.46 0.42 0.47 1.07 1.03 0.76 13.90 12.88 1.49 0.78 0.86 0.66 0.51 0.65 3.58 Na 0.62 0.37 0.53 0.49 0.65 0.71 Na Na 1.4 1.69 1.52 2.16 2.45 1.75 2.00 1.90 0.04 0 0.03 0 0 0.02 Na 0.00 1.03 1.12 1.18 1.4 1.28 1.27 9.46 10.69 0.48 0.56 0.62 0.44 0.85 0.75 1.53 1.68 0.35 0.32 0.37 0.28 0.37 0.25 1.34 1.28 1.14 1.5 1.21 1.05 1.23 1.39 10.05 9.20 0.5 0.27 0 2.31 3.17 1.45 4.63 2.92 1.05 0.15 2.16 3.44 2.58 2.84 5.96 5.94 1.18 1.93 1.46 0.73 2.24 2.16 2.74 4.39 1.09 1.01 0.43 0.96 0.06 0.09 0.82 1.04 0.89 1.31 1.22 0.49 2.03 2.20 0.58 0.36 0.56 0.28 1.59 0.82 2.52 2.22 0.49 0.72 0.48 0.79 0.72 0.9 2.55 2.31 0.86 0.58 0.95 0.35 0.22 0.26 4.52 4.43 3.08 4.11 0.04 0.55 0.43 0.12 0.17 0.27 0.13 0.31 Na Na 0.58 1.07 0.73 1.5 1.23 1.48 0.70 0.20 2.99 2.4 2.56 3.73 4.89 6.31 6.00 6.39 0.82 0.69 0.69 0.9 0.98 1.09 2.93 2.55

2014 3.48 2.53 4.59 2.82 3.13 5.57 4.33 3.72 2.85 7.09 4.62 3.57 5.63 3.41 3.84 4.37 2.33 5.35 5.21 3.61 4.84 5.62 3.42 5.02 2.37 4.38

2015 9.00 5.34 9.19 5.33 5.42 11.23 7.85 6.79 5.84 13.70 8.17 7.31 10.35 7.51 9.09 8.21 2.50 10.07 8.53 7.87 10.11 12.19 7.77 9.38 4.26 8.59

2016 6.10 1.40 3.89 1.46 2.49 4.02 3.25 3.66 3.44 5.78 2.03 2.94 3.14 2.26 3.58 2.54 1.74 4.93 4.52 3.63 4.29 4.76 2.77 4.96 2.18 3.40

Source: Health Information of India, 1995, 1996, 2000, 2001, 2003 LokSabhaUnstarred question: 2009, 2010, 2011, 2012

reported the highest percentage of deaths from the disease to the total reported cases. Delhi has reported about 6.3% of deaths from total reported cases in 2003, while it was only about 3% in the year 1991. The increasing proportion of deaths from tuberculosis is quite disturbing. One can argue that the higher proportion of death is due to possible missing cases of tuberculosis. In that situation too, it is worrying that these cases are in the society and are infecting others without getting treated for. However, the surprising feature is that the regions that have inferior healthcare facilities continue to perform better, if the data is considered worth comparable. If not so, one wonders why the collection agencies or the government is not paying attention to this fact that their own data speaks a different language if the analysis is done. The number of deaths and number of people suffering/infected by tuberculosis is taken from the same source, and a simple calculation exposes the entire process of documentation of a disease that we aim to eradicate by 2030.

Household Data from NFHS

53

Statistics indicates two probable situations: Either the number of tuberculosis cases is decreasing in the country, or people are still not reporting the disease because of multiple reasons including taboos associated with it. Both situations pose challenges to the combating agencies. If the reported numbers are decreasing, then one needs to seriously question the biomedical professionals, who are being proven incapable of seizing deaths from tuberculosis in spite of decrease in the prevalence. If people are not coming forward to reporting the cases, then there is a need to take up more intense awareness campaign to rural and remote areas, so that people will report the cases to the doctors without fear of being alienated in society and seek treatment. The above analysis clearly shows that the data on mortality from tuberculosis suffer serious discrepancies. There is an increasing trend in registered deaths, while for reported deaths there is a mixed trend. There is an increasing trend in the percentage of deaths among the reported cases of tuberculosis across different regions of the country. Delhi despite having better healthcare facilities and the first state to achieve full coverage under DOTS shows more deaths among the reported cases than other parts of the country. If the case of Delhi is taken as the national benchmarking considering that data collection and documentation in Delhi is relatively better and comparatively more reliable, there is serious concern on the situation of tuberculosis. There is the problem of comparability of data from various sources and for different periods; however, the information from the same sources can be taken as an indication of the prevailing pattern of disease.

Household Data from NFHS For understanding the pattern of morbidity from tuberculosis, the NFHS data for 1998–1999 and 2015–2016 is used for different states of India. The National Family Health Survey (NFHS) was carried out by the International Institute for Population Sciences (IIPS), Mumbai. The National Family Health Surveys, 1998–1999 (NFHS-2) and 2015–2016 (NFHS-4), provide information on population, health and nutrition for India and each state/union territory. NFHS-4, for the first time, provides district-level estimates for many important indicators. However to maintain comparability, I have used ecological regions, which are a congregation of contiguous districts as in NFHS-2, regions were the smallest sampling units. It collected information from a nationally representative sample of 92,486 households for 5,017,379 individuals (161,857 in urban areas and 355,133 in rural areas) during 1998–1999. NFHS-4 fieldwork for India was conducted from 20 January 2015 to 4 December 2016 by 14 Field Agencies and gathered information from 601,509 households, 699,686 women and 112,122 men. This survey inquired about each member of the household regarding occurrences of different diseases in different rounds. Tuberculosis has been common for the second and the fourth round, and thus this data set is being used to analyse pattern across the country. For the reference period for chronic diseases like tuberculosis, the survey asked if the person

54

3  Changing Geographies of Tuberculosis

was currently suffering from the disease. Besides, information on age and sex, religion, caste, educational attainment of household members and standard of living of the household (composed by NFHS) or Wealth Index (NFHS-4) has also been included. The sample that has been used by the NFHS is probably the largest one for which health-related information is available. However, this survey is based on the reported cases, and no medical certification has been done for the verification of the prevalence of the disease. During the survey the NFHS did not have the objective of accessing the morbidity among people, so the caution might not have been taken towards the sensitivity of the data related to the occurrence of the disease. Further, there might be missing cases of tuberculosis as stigma prevails in the society and many do not like to be identified as TB patient, especially for the fact that the disease is of the poor. Prevalence rate has been calculated based on the information given by the households about the prevalence of tuberculosis among the family member of the household. The calculation of prevalence rate has been done at three spatial levels: first, at the state level; second, across various geographical regions within a state; and third, across the ecological zones of India. The prevalence has been compared across the ecological region for different states and across various states for different geographical regions.

Ecological Zoning and Distribution of Tuberculosis In order to study the pattern of tuberculosis, 13 broad agro-ecological zones have been identified according to various ecological parameters as identified by Indian Council of Agricultural Research. Rural areas have only been considered in the regionalization scheme due to the constraint posed by the sampling stratification of NFHS. The survey has divided states into different regions by taking certain districts on a geographical basis. This has been done only for the rural areas, while urban areas in the respective regions are kept out of this particular sampling scheme. In order to overcome this lacuna, another parallel analysis has been done for the urban areas of India as a whole. Based on this available information for each household member, the data files for each region have been created. To observe the regional variations of the level and pattern of morbidity, all 13 ecological regions have been considered in the analysis. Four new states (Uttarakhand, Jharkhand, Chhattisgarh and Telangana) have been created during 1998–1999 and 2015–2016; for the earlier period, the data is for the combined state and is put in a way that it can be compared. For the analysis at the level of ecological regions, the earlier administrative units have been retained. Ecological regions are used here for analysis for the reason that the disease does not follow administrative boundary. Understanding of disease ecology and epidemiology suggests that disease pattern is dependent on ecological factors, nature of agent and characteristics of the host population, popularly known as ‘environment-agent-host tried’. The nature of disease prior to isolation of bacillus by Robert Koch in 1882 was

Ecological Zoning and Distribution of Tuberculosis

55

primarily based on the idea of ‘soil and seed’. The analysis has tried to ascertain the extent to which physical ecological factors affect the nature of disease prevalence and is affected by the socio-economic and political conditions of the individual and society.

Tuberculosis Across States Pronounced differences have been found in the level and pattern of morbidity from tuberculosis among the different states and different ecological regions of the country and also within the regions having similar ecological conditions (Maps 3.1 and 3.2). The data shows that during 1998–1999, India had 580 persons per lakh population suffering from tuberculosis, which improved substantially, and during 2015–2016, the prevalence is recorded as 317 per 100,000 population. The maximum occurrence of the disease is noticed in Nagaland (1624) followed by Meghalaya (1420) and Arunachal Pradesh (1312) during 1998–1999. Arunachal Pradesh (829) remained the worst affected state in 2015–2016, while Manipur (714) remained to have the second-highest prevalence of tuberculosis. Nagaland (666) continues to have a higher prevalence, whereas Meghalaya (577) has shown substantial improvement in the prevalence of tuberculosis. The most interesting and consistent feature remains the higher prevalence rate of tuberculosis in North-eastern states as compared to other parts of the country. The wet conditions of the region can be related to its higher occurrence as humid conditions provide the bacillus longer survival periods and so people become more prone to the disease. However, mere geographical condition is not sufficient condition to explain the higher prevalence of disease in the region. Bihar (981) and Orissa (832) were other states during NFHS-2 where the level of morbidity is much higher than the average for the country (Table 3.4). Bihar (604) continues to have a very high prevalence compared to the national average (317), though it is important to mention that the state of Bihar got divided into two: Bihar and Jharkhand. The state of Jharkhand had no separate benchmark. When compared with the prevalence of Bihar (981) during 1998–1999, Jharkhand has shown significant improvement as the current prevalence rate for Jharkhand (318) is close to the national average. Madhya Pradesh (602) had higher prevalence during 1998–1999; the state showed much lower prevalence rate during 2015–2016. Madhya Pradesh was also divided into two, and Chhattisgarh, which is a tribe-­ dominated state and poorer compared to other states in India, reported a very low prevalence rate of 193 per lakh. It is clear from the pattern at two points of time that the rate of decline is different across states. Some states performed better than others (Map 3.1). Both periods fall when the country has started the Revised National Tuberculosis Control Programme (RNTCP). RNTCP was started on a pilot basis in 1993 and full-fledged beginning in 1997, though it covered the entire country by 2006. Table 3.5 shows the rate of decline across states during the last 20 years; it is evident that states like Goa, Tripura and Mizoram recorded a decline of about 75% or more, almost 30

56

3  Changing Geographies of Tuberculosis

Map 3.1  Prevalence of tuberculosis across states in India 1998–1999

percentage point higher than the decline at the national average. Two southern states, namely, Karnataka and Kerala, have shown a very slow decline of about 20% and 25%, respectively. The prevalence of tuberculosis in these states especially in Karnataka (259) was low even during 1998–1999. States like Punjab, Haryana and Tamil Nadu have shown decline of only about 31%, which are otherwise better performing states on economic and demographic parameters. Bihar and Uttar

Ecological Zoning and Distribution of Tuberculosis

57

Map 3.2  Prevalence of tuberculosis across states in India 2015–2016

Pradesh are high prevalence states, and the prevalence of tuberculosis has declined at a moderate rate of 38% and 36%, respectively. The high prevalence in populous states can be attributed to the fact that these are the areas where a larger proportion of people live below the poverty line. In this condition, inadequate nutritional intake, poor living conditions and poor public health facilities become other factors that make people more susceptible to this

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Table 3.4  Prevalence of tuberculosis across various states India/states India Andhra Pradesh Telangana Arunachal Pradesh Assam Bihar Jharkhand Goa Gujarat Haryana Himachal Pradesh Jammu and Kashmir Karnataka Kerala Madhya Pradesh Chhattisgarh

Prevalence 1998–1999 580 571 1312 674 981 437 433 360 250 407 259 489 602

2015–2016 317 316 320 829 295 604 318 63 208 248 136 170 207 366 214 193

India/states Maharashtra Manipur Meghalaya Mizoram Nagaland Delhi Odisha Punjab Rajasthan Sikkim Tamil Nadu Tripura Uttar Pradesh Uttarakhand West Bengal

Prevalence 1998–1999 375 1108 1420 1053 1624 503 832 202 391 980 491 1137 517 422

2015–2016 205 714 566 267 666 208 318 138 221 487 337 253 329 216 361

Source: NFHS 2 and NFHS 4 Table 3.5  Change in prevalence of tuberculosis across states (from 1998–1999 to 2015–2016) India/ States Andhra Pradesh Arunachal Pradesh Assam Bihar Goa Gujarat Haryana Himachal Pradesh Jammu and Kashmir Karnataka Kerala Madhya Pradesh Maharashtra Manipur

Change (in %) 44.66 36.81 56.23 38.43 85.58 51.96 31.11 45.60 58.23 20.08 25.15 64.45 45.33 35.56

States Meghalaya Mizoram Nagaland Orissa Punjab Rajasthan Sikkim Tamil Nadu Tripura Uttar Pradesh West Bengal Delhi

Change (in %) 60.14 74.64 58.99 61.78 31.68 43.48 50.31 31.36 77.75 36.36 14.45 58.65

India

45.34

Source: NFHS (2 and 4)

disease. These differences clearly indicate that the health-profile of a population depends on a combination of existing environmental risks (physical, biological and social), the proportion of the population facing these different risks and the sociocultural-­demographic profile of the region. The health-profile gets affected by the availability of and accessibility to health services.

Ecological Zoning and Distribution of Tuberculosis

59

Even under similar ecological conditions, the pattern differs from region to region primarily due to economic opportunities and access to resources. Exposure to certain kinds of environment only makes people susceptible to certain diseases, but it ultimately depends on the economic condition of individuals, their social and political bargaining power and their accessibility to the healthcare facilities. This becomes more evident when we analyse the level and pattern of morbidity across different ecological regions of India.

Tuberculosis Across Ecologies This section tries to identify the levels and pattern of morbidity among the people living in similar ecological conditions. The hypothesis is that people living in similar climatic conditions may not be enjoying similar good or bad health or may not be suffering from the same disease at the same point of time. Exposure to certain kinds of environment does make people susceptible to a certain disease, but it finally depends on the economic condition of individuals, their social and political bargaining power and their accessibility to healthcare facilities. Using data from the second and fourth round of National Family and Health Survey of India data, this section tries to map regional variations in the level and pattern of morbidity across different ecological zones of India (Maps 3.3 and 3.4). The study also seeks to examine whether such variations are a product of differences in socio-economic factors or are the result of the ecological factors per se. It is evident that among the ecological regions, Eastern Himalayas had the highest prevalence as also is seen when state-wise prevalence is analysed. This region primarily consists of all the North-eastern states and a few districts of West Bengal. The ecological condition can be considered most suitable for the growth of the bacillus. However, the prevalence of the disease is more dependent on political and economic conditions than the mere climatic conditions. The change in the NFHS-4 establishes this argument. During 2015–2016, two states namely Mizoram and Tripura from the Eastern Himalayan regions have shown significant decline, whereas the state of Arunachal Pradesh has shown a very slow decline of only about 36%. The ecological conditions conducive for the thriving of the bacillus is not the best in Arunachal Pradesh; still, the state has shown poor performance in containing the disease. Middle Ganga Plain had the highest prevalence of tuberculosis (864) outside the Himalayan region during 1998–1999. During the recent round of survey, the situation in Middle Ganga Plane has improved, and prevalence is slightly lower than the region of Eastern Himalaya. The former includes the states of Bihar and Uttar Pradesh, which form a part of BIMARU states, the states with a very low standard of living and with a large proportion of the population living below the poverty line. Here, the higher prevalence can be related to poor living conditions and unavailability of medical facilities. Bihar is at the lowest level in terms of per capita state domestic product (SDP) in the country. The low agricultural productivity and 90% of the total area under food grains hinder the overall growth and

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3  Changing Geographies of Tuberculosis

Map 3.3  Prevalence of tuberculosis across ecological region in India 1998–1999

development of the state (Pal 1998). This was followed by Eastern Plateau and Hills (726) in 1998–1999, whereas during 2015–2016 this region has recorded low prevalence (266). This is the most steep decline. The latter region comprises Orissa, Madhya Pradesh, West Bengal and Maharashtra. Here, too, the first two states are included in the BIMARU states. It is to be noted that states of Orissa and Madhya

Ecological Zoning and Distribution of Tuberculosis

61

Map 3.4  Prevalence of tuberculosis across ecological region in India 2015–2016

Pradesh have shown the tremendous resolve to address the issue and have been able to contain the prevalence of tuberculosis. However, we have to wait for the next round of survey to say it beyond doubt, as there can be reporting issue in these states. These states are poor states of India and also have a taboo against tuberculosis. The undulating topography of the region dotted with plateau and surging hills results in poor productivity. This leads to poor economic conditions, which

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3  Changing Geographies of Tuberculosis

Table 3.6  Prevalence of tuberculosis across the ecological regions

Ecological regions West Himalayas

Prevalence per lakh 1998– 2015– 1999 2016 246 158

East Himalayas

958

494

Lower Ganga Plain Middle Ganga Plain Upper Ganga Plain Eastern Plateau and Hills Central Plateau and Hills

388 864 375 726

330 447 296 266

500

203

Ecological regions Western Plateau and Hills Southern Plateau and Hills Eastern Coastal Plain Western Coastal Plain Gujarat Plains Western Dry Region

Prevalence per lakh 1998– 2015– 1999 2016 545 209 364

258

613 390 433 381

355 260 208 240

Source: calculated from the NFHS (2&4)

aggravate the problem, making people of the region more prone to diseases like tuberculosis. When compared with the reported and registered deaths (Tables 3.3 and 3.5), these two states do not stand out and follow the pattern. Eastern Coastal Plain is another region with higher prevalence (613 per lakh) i.e. above the national average of 580 per lakh during 1998–1999, and the trend continues during 2015–2016; also the region has higher prevalence (355) compared to the national average (317). It consists of the states of Orissa and the coastal areas of Andhra Pradesh along the Bay of Bengal. This region is prone to floods and cyclones at regular intervals resulting in humid conditions in the region. It seems that the wet surroundings make people more susceptible to tuberculosis in this region. The above analysis also shows that the wetter areas of the North East exhibit a higher prevalence of tuberculosis than other parts of the country. Therefore, it can be said that people living in damp environmental conditions are more vulnerable to the bacillus of this disease. Western Himalayan region reported the least number of cases (246) followed by Southern Plateaus and Hills (364) during NFHS-2. Western Himalayan region (158) continues to have the lowest prevalence, though Southern Plateaus and Hill region are lagging behind. The latter i.e. Southern Plateaus and Hills extends largely over Karnataka and Andhra Pradesh and also includes the uplands of Tamil Nadu. As the state of Karnataka has shown slower decline in prevalence, it affects the entire geographical region. It is clear that decline of disease and logic prevalence of disease are not primarily based on ecological factors rather it is the socio-economic and political factors which affect prevalence rate and decline or surge in prevalence of tuberculosis. The low prevalence, which is below the national average, can be attributed to drier climatic conditions prevailing in this region. Similar conditions can be ascribed for the lower prevalence rate in the western dry region (381) comprising the state of Rajasthan. The region is characterized by hot deserts with scanty rainfall, high evaporation and absence of perennial rivers.

Ecological Zoning and Distribution of Tuberculosis

63

Table 3.7  Prevalence of tuberculosis across regions of ecological zones Ecological Zones regions 1 HP1 1 HP2 1 HP3 1 UP Hills 3 WB 3 3 WB 4 3 WB 5 4 Bihar 1 4 Bihar 2 4 Bihar 3 4 Bihar 4 4 Bihar 5 4 Bihar 6 4 UP Central 4 UP East 5 Punjab 1 5 Punjab 2 5 Punjab 3 5 Punjab 4 5 Har1 5 Har2 5 Har3 5 Har4 5 West UP 6 Bihar 7 6 Bihar 8 6 Orrisa1 6 Orrisa2 6 Orrisa3 6 MP 1 6 Maha 6 7 UP 5 7 MP 2 7 MP 6 7 MP 7 7 Raj 3 7 Raj 4 8 Maha 4 8 Maha 5 8 MP3

Prevalence per lakh 1998– 2015– 1999 2016 488 138 214 153 250 114 225 140 430 126 613 361 211 180 842 610 1096 343 1230 506 1294 173 1382 156 833 256 754 321 520 302 209 222 99 105 287 115 174 100 250 275 334 198 300 250 524 216 543 360 462 95 773 43 1252 411 1049 449 664 261 548 168 171 189 521 207 561 255 561 162 536 216 312 124 524 199 223 177 309 280 721 268

Ecological Zones regions 9 KAR 1 9 KAR 2 9 KAR 4 9 KAR 5 9 KAR 6 9 AP 4 9 AP 5 9 AP 6 9 TN 1 9 TN 2 10 Orissa 4 10 AP1 10 AP2 10 AP3 10 TN 3 10 TN 4 10 TN 5 11 Kerala 1 11 Kerala 2 11 Kerala 3 11 Kerala 4 11 Maha 1 11 Maha 2 11 Maha 3 11 Karn 3 12 GUJ1 12 GUJ2 12 GUJ3 12 GUJ4 12 GUJ5 12 GUJ6 12 GUJ7 12 GUJ8 12 GUJ9 13 RAJ West 13 RAJ West

Prevalence per lakh 1998– 2015– 1999 2016 329 140 56 52 463 183 224 298 155 233 675 214 421 272 914 298 397 250 436 439 738 336 850 403 477 233 226 366 2507 344 524 320 244 456 283 303 537 355 241 351 878 455 729 244 38 266 54 146 623 232 297 249 47 148 351 134 365 275 347 176 279 114 813 164 797 338 509 177 279 199 448 277

(continued)

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3  Changing Geographies of Tuberculosis

Table 3.7 (continued) Ecological Zones regions 8 MP4 8 MP5

Prevalence per lakh 1998– 2015– 1999 2016 593 193 701 162

Ecological Zones regions

Prevalence per lakh 1998– 2015– 1999 2016

Source: calculated from the NFHS (2&4) 1 West Himalaya; 2 East Himalaya; 3 Lower Ganga Plain; 4 Middle Ganga Plain; 5 Upper Ganga Plain; 6 Eastern Plateau and Hills; 7 Central Plateau and Hills; 8 Western Plateau and Hills; 9 Southern Plateau and Hills; 10 East Coastal Plain; 11 West Coastal Plain; 12 Gujarat Plains; 13 Western Dry Region

The analysis becomes more interesting when one looks at the prevalence rate of tuberculosis across the sub-regions of these ecological zones, which reveals that even similar physical conditions do not singularly affect the morbidity pattern in these regions. There are several other features that are related to these aspects. These features are socio-economic conditions of the people and the availability of medical and health services in the respective regions (Table 3.7). Tuberculosis is a rare disease in some part of India, and in some regions, the low prevalence rate may be attributed to the very small sample size of the affected population, which is unsuitable for generalization. TN 3, which consists of only Kanyakumari district, is one such region that has been kept separate because of its physical difference from neighbouring parts of Tamil Nadu and was included in East coastal planes. Among the various sub-regions of the ecological regions, the prevalence of disease is highest (2507) in this region. Humid conditions are said to make people more susceptible to tuberculosis as the figure is much higher than the average of the ecological region of which it forms the part, i.e. Eastern Coastal Plain (613); it is the poor economic condition of the people in this region that is to be the prime reason. The small sample size is also responsible for a disproportionate figure. Close to the Eastern Coastal Plain is the high prevalence in Southern Plateau and Hill regions during 2015–2016 which make us think about the indication during NFHS-2 and growing tuberculosis in certain parts of southern India. TN 2 which is part of this region has actually shown an increase in the prevalence of tuberculosis from 436 per lakh to 439 per lakh. Though the increase is marginal, yet when looked in context that at the national level, there has been about 45% decline in the prevalence of disease, it becomes worrying. The other sub-regions with very high prevalence during 1998–1999 shown in Table 3.8 (above 1000) are Bihar 5 (1382), Bihar 4 (1294), Orissa 1 (1252), Bihar 3 (1230), Bihar 2 (1096) and Orissa 2 (1049). Here, the sub-regions of Bihar fall into the Middle Ganga Plains, where the average figure is 864 i.e. highest among all the ecological regions, while Orissa forms part of the Eastern Plateau and Hills, with the second-highest occurrence at 726. The causes for the higher prevalence in all these sub-regions have been discussed above, and they all point out towards poor living conditions in these sub-regions. The other extreme is the areas where the prevalence rate of tuberculosis is less than 100 during 1998–1999. These regions are

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Table 3.8  Distribution of ecological sub-regions on the basis of the prevalence of tuberculosis in these regions (1998–1999) Categories Range Ecological sub-regions Very low Less Punjab 1; Karnataka 2; Maharashtra 2, Maharashtra 3; Gujarat 2 than 100 Low 101–250 HP 2; HP 3; UP Hills; WB 5; Punjab 1; Punjab 2; Haryana 1; Karnataka 5; Karnataka 6; TN 1; TN 2; AP 3; TN 5; Kerala 3; Maharashtra 6; Medium 251–500 HP 1; WB 3; Punjab 3; Haryana 2; Haryana 3; Bihar 7; Karnataka 1; Karnataka 4; AP 5; AP 2; Kerala 1; Gujarat 1; Gujarat 3; Rajasthan 3; Maharashtra 3; Gujarat 4; Gujarat 5; Gujarat 6; Rajasthan West; Rajasthan East High 501–750 WB 4; UP East; Haryana 4; West UP; AP 4; Orissa 4; TN 4; Kerala 2; Maharashtra 1; Karnataka 3; Orissa 3; MP 1; UP 5; MP 2; MP 5; MP 7; Very high 751– Bihar 8; Bihar 6; UP Central; Bihar 1; AP 6; AP 1; Kerela 4; Gujarat 7; 1000 Gujarat 8 Bihar 2; Bihar 3; Bihar 4; Bihar 5; Orissa 1; Orissa 2; TN 3 Alarming More than 1000 Source: computed from the NFHS (2) data

Maharashtra 2 (38), Gujarat 2 (47), Maharashtra 3 (54), Karnataka 2 (56) and Punjab 2 (99). Maharashtra 2 and Maharashtra 3 are part of West Coastal Plain comprising the districts of Nasik, Dhule, Jalgaon and Ahmednagar, Pune, Satara, Sangli, Solapur, Kolapur respectively. The region experiences low rainfall as it more or less comes in the rain-shadow region of the Western Ghats. Moreover, the level of development is much higher in this part of Maharashtra as compared to the eastern part of the state and other states. Gujarat 2 is in Gujarat Plains with the districts of Surendranagar, Bhavnagar and Amreli. And this region is an exception in itself as within Gujarat Plains is the district of Kheda forming Gujarat 7 where the death toll is as high as 813 followed by Gujarat 8 (PanchMahals and Vadodara) with 797. Karnataka 2 is part of Southern Plateau and Hills, with Belgaum and Dharwad. In this ecological region also there is an extreme case of AP 6 (Karimnagar, Khammam and Warrangal) with prevalence as high as 914. Punjab 2 comprising Jalandhar, Kapurthala, Hoshiarpur and Rupnagar lies within the Upper Ganga Plains, and the striking feature is that within this region, there is a sub-region with prevalence as high as 543 (West UP). Thus, the above analysis clearly shows that living conditions of the region are directly related to the pattern of morbidity along with the physical settings. During 2015–2016, the situation is surprising; the lowest prevalence across the ecological region is from Bihar 7 (95), Bihar 8 (43) and Karnatka 2 (52). Bihar 7 and Bihar 8 are now the new states of Jharkhand (Table 3.7). The low prevalence in Jharkhand is remarkable during this phase and is noteworthy. When we analyse the relative decline in prevalence, Bihar 8 has the most steep decline of up to 94%, closely followed by Bihar 7 which has recorded a decline of about 79%. The analysis at the disaggregated level indicates a pattern of rise and fall in the prevalence of tuberculosis. Regions of Maharashtra have shown increase in the prevalence of tuberculosis. These can be due to different sampling issues.

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The pertinent question here is why certain regions, despite experiencing similar geographical conditions, have different prevalence rates, while across different geographical regions governed through one political set-up, the prevalence rate is less variable. One might not be wrong to suggest that political factors are more important in the occurrence and control of the disease rather than mere environmental factors.4 The higher prevalence of tuberculosis in the North-eastern hilly regions is often attributed to the damp climatic condition and inaccessibility to certain regions. The fact is also true and to be taken into consideration that the region has poor accessibility, almost non-existent public health and hygiene interventions, poor housing conditions and larger wealth inequality coupled with uneven distribution of healthcare facilities. These in combination create a soil that will allow the seed to grow faster, if we believe in ‘soil-seed’ metaphor to explain the prevalence of tuberculosis. The difference between Eastern Himalayas and Western Himalayas, which shows two extremes, is a matter of further investigation. However, one might argue that the ‘theory of virgin land’ provides some explanation for the higher prevalence of the disease in the region. The analysis of the prevalence rate across different groups of people and the distribution of patients in various economic groups provide a better understanding of the factors that affect the probability of being morbid.

Changing Ecologies of Tuberculosis The analysis of data available for different points of time indicates the changes in the pattern of the prevalence of tuberculosis in India over time. We have seen that areas of higher prevalence in the 1990s have been able to improve and have recorded lower prevalence. The analysis since then across different parts of the world has been consistent about the consideration of the material environment and suggests that most of the patients have been found living in an unhealthy environment. The analysis, which I have done across ecological regions, suggests different levels of prevalence in regions which have been governed by different kinds of political priority. Different prevalence levels were found in the Western Plateau and Hills for the NFHS- 2 round (1998–1999) which consist of primarily two states, viz. Maharashtra and Madhya Pradesh. While the Maharashtra part reported prevalence of tuberculosis around 300, Madhya Pradesh reported about 500 and a maximum of about 700 in one of the sub-regions (Table 3.9). The same region in NFHS-4 has a different story to tell; the relative improvement in the Maharashtra part is way too slow compared to Madhya Pradesh part. The sociopolitical realities intersect with the ecological characteristics of the regions and shaped and reshape the disease ecology for a particular region.

4  The effect of political factors on shaping the geographical/environmental factors is taken into consideration. The role of the state in providing the health-care facilities to the mass and to the disadvantageous group has an impact on the morbidity rate of a region.

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Table 3.9  Distribution of ecological sub-regions on the basis of the prevalence of tuberculosis in these regions (2015–2016) Categories Range Low Less than 100 Medium 101– 250

High

251– 500

Ecological sub-regions Bihar 7, Bihar 8, KAR2, WB1, WB2,

AP2, AP 4, Bihar4, Bihar5, GUJ1, GUJ2, GUJ3, GUJ5, GUJ6, GUJ7, GUJ9, Har2, Har3, Har4, HP1, HP2, HP3, KAR1, KAR2, KAR3, KAR4, KAR5, KAR6, MP1, MP4, MP5, MP6, MP7, Mah1, Mah2, Mah3, Mah4, Mah6, Punjab1, Punjab2, Punjab3, Punjab4, Raj West, TN1, WB1, WB2, WB3, WB4, WB5, UP Hills AP1, AP3, AP5, AP6, Bihar2, Bihar6, GUJ4, GUJ8, Har1, Kerela1, Kerela2, MP2, Mp3, Mah5, Orissa1, Orissa2, Orissa3, Orissa4, Raj north-east, TN2, TN3, TN4, TN5, UPWest, UP Central, UP East.

Source: computed from the NFHS (4) data

The term ecology has had varied meanings, and its connotations have changed over time in the context of medicine and disease. For about 2000 years the importance of environment and space in relation to the occurrence and prevalence of diseases has been recognized. As early as in the fourth century B.C., Hippocrates tried to explain the association between various factors of the environment and the occurrence of disease. Nevertheless, with the ‘victories’, ‘breakthroughs’ and ‘remarkable advances’ in medicine and development of vaccination for the common communicable and infectious disease, the social and cultural ecology tradition got relegated to an unimportant position in the medical profession. It was advocated that only physicians can diagnose the cause of disease and prescribe a treatment. Each disease has specific and distinguishable features, which are universal to human species, and diagnosis is to be based on the combination and severity of these symptoms. For tuberculosis, it was the presence or absence of bacillus in the human body to start chemotherapy or to notify infection. The rise of modern science challenged and eventually overthrew explanations in the tradition of Hippocrates (Buchanan 2000; Mayer 1996, 2000) even for the disease like tuberculosis that was considered for decades and centuries a disease connected to lack of fresh air, poor sanitation and so on. Most members of the medical profession in the last two decades of the nineteenth century (1880–1900) were primarily interested in treating their patients and improving their individual health. The successful works of Louis Pasteur, Robert Koch and others in bacteriological research led to the conceptualization of ‘Germ Theory of Disease’ and overdetermination of presence or absence of the pathogen. The change in determining the cause of disease i.e. from the environment to the agent has often been called the ‘first revolution’ in the field of medicine and health (Buchanan 2000). The emergence of the clinical perception of disease can be traced back to the development of the science of quantification spearheaded by Newton and Descartes in mathematics and mechanics leading to the foundation of a quantitative and geometric description of the material world and of human beings (Bernal 1968). Such interventions and further epidemiological studies narrowed the

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disease ecology tradition to study the environment in which pathogen thrives including the estimation of the spread of pathogens through different models.

Conclusions To conclude this chapter, I wish to argue that while India every year publishes an annual report on tuberculosis, it lacks data to study and analyse the pattern of disease which can be authentic beyond doubt or can be used to identify the ‘hotspots’ of tuberculosis. With the technologies available, it is possible to estimate and predict disease hotspot where specific interventions can be made that would contribute to the mission ‘End TB by 2030’. Indian scenario becomes conspicuous for about a million ‘missing’ cases every year that are not notified, and most remain either undiagnosed or unaccountably and inadequately diagnosed and treated in the private sector (Purty 2018). Further, the ecological analysis and factors which contribute and shape different ecologies for individuals and their activities could become a valuable input if we ensure reliable and timely comparable data sets at disaggregated levels. Acknowledgements  This is an updated version of the arguments already presented in Choudhary, B.  K. Health, Illness and Disease: A Political Ecology Perspective’, Economic and Political Weekly 49(45): 60–68: 2014, used here with the kind permission of EPW and the publisher Sameeksha Trust. The original article is available via https://www.epw.in/journal/2014/45/ special-­articles/health-­illness-­and-­disease.html.

References Bernal, J.  D. (1968). The relation of microscopic structure to molecular structure. Quarterly Reviews of Biophysics, 1(1), 81–87. Buchanan, D. R. (2000). An ethics for health promotion: Rethinking the source of human well-­ Being. New York: OUP. DGHS. (2018). India TB report 2018  – RNTCP annual status report. New Delhi: Central TB Division, Directorate General of Health Services, Ministry of Health and Family Welfare. ICMR. (1959). “Tuberculosis in India”, special report no 34, a sample survey 1955–58. New Delhi: ICMR. Mayer, J. D. (1996). The political ecology of disease as one new focus for medical geography. Progress in Human Geography, 20(4), 441–456. Mayer, J.  D. (2000). Geography, ecology and emerging infectious disease. Social Science and Medicine, 50, 937–952. Ministry of Health. (1946). Report of health survey and development committee. New Delhi: Chairman: Sir Joseph Bhore, Government of India.

References

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MOHFW. (2004). Tuberculosis India 2004: RNTCP status report. New Delhi: Central Tuberculosis Division, DGHS. Pal, S. K. (1998). Physical geography of India. Calcutta: Orient Longman. Purty, A.  J. (2018). Detect–treat–prevent–build: Strategy for TB elimination in India by 2025. Indian Journal of Community Medicine, 43(1), 1–4.

Chapter 4

Containing Tuberculosis During Colonial Period

In the light of the nineteenth century sociopolitical dynamics, the British Empire had vested interest in being perceived as benevolent and kind towards the subject in the conquered territories. Going by that agenda, the tokens of the Indian British Empire too focused towards deeds of philanthropic nature like taking humanitarian steps in improving the general public health system. Health became the new arsenal of justification for colonial rule. The first medical college in India was established in 1835, and a research unit, i.e. Calcutta School of Tropical Medicine was added in the year 1914. These initiatives though were not devoid of their covert interest. The massive spread and consequent death of troops owing to tropical diseases were of much concern to the otherwise invincible Empire. By the end of the nineteenth century, medical supremacy and expertise had become a tool to demonstrate political, technical and military lordship. Diseases and medical treatment of the same had far-reaching impact other than just health benefits. The nature of the century was such that countries had a lot at stake and lot to prove by the way they dealt with medical crisis. This gave rise to medical interventionism (Arnold 1989). Europeans then had to prove their superlative skill and mastery worldwide. The major campaign in the colonies against sleeping sickness, plague, cholera, yellow fever and malaria during the period between 1890 and the First World War strengthen this argument. However, it was the internal contradiction of capitalism between the pursuit of labour efficiency and the pursuit of profit that impelled European colonial regimes and the commercial and industrial enterprises working under them towards their greater involvement in indigenous healthcare. Leiban (1977) quoted Virchow saying that politics was ‘nothing but medicine on a grand scale’. Withstanding the spread and reverberations of tuberculosis in India had several stages to it during the colonial period. This chapter would discuss those phases along with the factors which can be listed as possible arguments leading to varying ramifications. However, it is to be noted that the most important issue on which the efforts of containment were based was the comprehension and absorbing of the nature of the disease in its totality.

© Springer Nature Switzerland AG 2021 B. K. Choudhary, Ecology of Tuberculosis in India, Global Perspectives on Health Geography, https://doi.org/10.1007/978-3-030-64034-7_4

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Thoughts, Theories and Tuberculosis The sheer multiplicity and diversity of theories and ways in which the society at large tried to safeguard them from the pangs of the distemper speak volumes of the fear and ignorance that surrounded the tuberculosis narrative (Dubos and Dubos 1952). In 1899, the British identified tuberculosis as an epidemic and communicated the same to the viceroy of India. A medical man for the impending conference in London was also requested (Home 1899). But the appeal was innocently denied on the pretext of unavailability of medical men owing to the general scarcity. It was also suggested that if deemed necessary, the crown could choose one from the medical men having a vacation in Britain. The increase in the incidence of the disease in the colonies was also noticed. Unanimously it became of prime importance to take cognizance of the matter and pierce through the underlying factors behind the colossal outbreak as part of the combat measures. After much deduction, it was concluded that because India had a huge population which was brutally poverty-stricken and the fact that scarcity of space, i.e. close geophysical proximity among subjects was evident made the outbreak and impact extremely severe. Concentration of people in the vicinity of the growing industrial centres added fuel to the fury. The disease unfurled to unknown people and spaces in no time. Reporting and recording of the same was however done in a desultory fashion. The lack of enthusiasm and planning on the part of the government was obvious when in the 1899’s report submitted to the then government, it meagrely noted that due to the unavailability of trained medical men, the number of deaths caused by the disease remained uncertified and unascertained (Home 1899). In the same vein, it also stated that even in Calcutta, more medical personnel were engaged; more than 50% of deaths remained without any medical attendance. Such record keeping and comments though did not yield any significant intervention by the then colonial government; documentation remained mostly sporadic with irregular reporting from different parts of the country, as put forward by the Lankaster report, 1912. The cause and spread of tuberculosis were much contested. Some blamed its infectious medical nature, while others considered it to be a fatal by-product of social and economic deficiency. Muthu (1922) argued that tuberculosis either is a disease from beginning to and by bacillus or is pre-eminently a constitutional disease. Doctor Muthu had long been associated with the sanatorium and on the basis of his experience came up with following articulations: 1. The germ theory has not satisfactorily explained all the problems of the disease. The presence of tubercle bacillus is not a decisive factor in the development of tuberculous processes. 2. We have made too much of microbes and too little of man in the causation of tuberculosis, which more truly lays within the body than outside. There is no valid proof that the widespread prevalence of the disease is brought about in the majority of cases by its contagious character.

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3. Tuberculosis is a disease of a civilization of vicious social and economic environment of poor and deranged nutrition – in fact, it is a deficiency disease affecting the body metabolism, the condition of the blood and the vitality of the system. 4. Morbid processes produced in the body by impaired nutrition and metabolism favour the development of pathogenic organism which therefore follows and does not make pathological conditions. It is man that through his environment speaks the last word in the causation, the continuation and the cure of tuberculosis. 5. Tuberculosis is not a definite entity. It is a blood dyscrasia, a deranged metabolic process, which if allowed to persist becomes pathological when it manifests clinical symptoms. Muthu (1922:11). About 99% of deaths being reported from the developing countries in 2018 (WHO 2018) does provide some merit to the reflections of Muthu (1922). The question, however, remains how colonial and postcolonial governments managed not to address the issue of nutrition. Muthu however also wrote about an alternative view on tuberculosis, and he somehow captured the prevailing views in the professional and political spheres in the first half of the twentieth century. The first view is that ‘the seed makes the soil’; the constitutional diathesis is the result of bacterial infection. The alternative view proposed the argument that the strenuous or scrofulous diathesis is a primary condition which instead of being caused by the toxin of tubercle bacillus is the result of bad living and poor nutrition (Muthu 1922). For the most part of it, the containment, spread and inception of the disease were hidden from the naked eyes of the ordinary people. That is, even though awareness was being spread about the disease, the onus to keep the disease at bay was put upon the victim. The state had no responsibility whatsoever. Nezlin (1955) considered tuberculosis as a curable disease and argued that ‘a tremendous part in effective treatment is played by a proper rational regimen. The patient who daily guards and strengthens his nervous system, avoids harmful habit (smoking), spends a lot of time in the fresh air, hardens his body, strictly observes measures of hygiene, takes care not to overwork or to overtire, and who follows his physicians’ advice and instructions, lays a firm foundation of recovery. The outcome of the disease depends to a considerable degree on the patient himself’. The book was published after a decade when medication in the form of streptomycin was widely available, again stating that the need to get cured or become better lied at the hands of the patients themselves, now even more concretized after the introduction of viable medicine. The idea of ‘fresh air treatment’ was a dominant notion and was the reason for the establishment of sanatorium across the world including India. The role of hygiene however remained confined to professional writings, and policy implementation largely remained silent on this aspect. The interesting arguments about the strengthening of the patients’ body also remained prevalent mostly in the form of ‘victim blaming’, and the role of nutrition which otherwise was proved in European experiences did not get much attention until the 1970s when the political economy of health became widely discussed.

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 ransmission of Disease and Knowledge – Indian T Medical Traditions The knowledge of tuberculosis in India that is, its prevention, causes and cure had both economic and classist side to it. ‘Phthisis and its Cure’ was published in India by K.C. Roy and Co, Monghyr in 1907 for sale in the open market. The publisher was also the supplier of tuberculin – the lone medicine which was available for the ‘scientific treatment of tuberculosis’ in the early twentieth century. The book had all the valuable information, critically mentioning the details of the distemper and its treatment, and was of immense help to the people. But it must be noted that the book was written in English and, therefore, catered to specific substrata of readers. Those who could mould the policy to their benefit and had the necessary social capital to be benefited had the exclusive knowledge of the disease as well. Meanwhile, the majority population was clueless and helpless both in terms of poverty of knowledge and economics. The possibility of higher awareness ensuring higher adoption of the ‘scientific treatment of tuberculosis’ as T Hager strand in his ‘diffusion theory’ visualize cannot be ruled out. Tuberculosis as a disease was considered contagious, and indirect reference to this fact can be found in official records since 1894 when guidelines were issued to factories under Indian Factory Act 1881 amended by Act XI of 1891 for decongestion (Judicial 1894). The Act was promulgated to ensure minimum space for each individual worker so that proper ventilation can be ensured (Home 1902a, b). Yet there was nothing in the Factory Act 1881 under which the factory occupiers ‘could be compelled to move in this matter’ or to say the legislation lacked tooth and implementation remained at best on the will of the factory owners. One can find attempt on the part of the then colonial government to ensure basic ventilation for the workers, which somehow had come into the psyche of the British Urban Authorities after their own experiences of disasters in cramped industrial cities. However, absence of implementation mechanism and leaving the legislation on the ‘free will’ of ‘violator’ raise serious doubts on the intention of the British Government in India. A representative from India, Dr. Alexander Crombie, was sent to attend the Congress on Tuberculosis in Berlin which was held in May 1899 and was asked to submit a report on the congress and the situation in India. After his return from the congress, he submitted a report entitled ‘Report on the Recent Congress on Tuberculosis at Berlin with Special Reference to the Prevalence and Prevention of the Disease in India’ to the Government of India (GOI) in October 1899. This was probably the first official documentation on the cause, prevalence and prevention of tuberculosis in India. The nomination of Dr. Crombie as a representative from India to attend the congress in 1899 can be taken as a landmark in Indian history of tuberculosis. He could attend the congress as he was on vacation in Europe. The archival records showed that the then Viceroy of India had refused to send any medical man from India on the ground that one could not be spared from here (Home 1899). However, no specific reason for not sending a representative from India was given

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even to the reply to the crown. The response from Viceroy to the letter from the secretary to the Crown in Britain showed ‘…we could not spare any officer from India for tuberculosis conference and suggest you should select officers those now on leave in Europe …’ (Home 1899). Crombie’s report accepts that tubercular disease is due to the presence and multiplication of the tubercle bacillus discovered by Dr. Robert Koch. The book entitled ‘Phthisis and its Cure’, published by K.C. Roy and Co. accepted a similar explanation for the prevalence of the disease. Two later reports by Lankaster in 1912 and by Cummins in 1932 also go along with the arguments provided in 1899. The importance of good hygiene at the public place was highlighted in India in the early twentieth century. The sanitary report for the jails in 1903 accepted that ‘the incidence of tubercle of lungs and of pulmonary disease generally may be reduced to a minimum by proper measures of hygiene’ (Home 1903). The conception of the disease in India or for that matter anywhere in the world varied along some of the key variables. Important among these were the causation and association factors like climate, heredity, nature of disease, i.e. contagious or non-contagious and so on (Pearson 1912). In 1899, the first report on tuberculosis was submitted to the Indian government. It argued ‘tuberculosis is acquired not inherited’ (Home 1899). The international medical crowd had its own reservation. They opined that the disease is not caused by heredity but as a disposition. Crombie’s report quotes Rudolf Virchow  – the father of modern pathology, stating ‘it is never seen in the unborn baby though it may be implanted in the first few days after birth …it is inherited not as a disease but as a predisposition’ (Home 1899). Koch and Virchow were of the opinion that a predisposition to tuberculosis could be inherited. Mukerjee (1930) in his book ‘Tuberculosis and its Early Diagnosis and Treatment’ argued that the link between tuberculosis and heredity remained unsubstantiated and no proof was found to conclude this. It was postnatal contagion that was accountable for a much larger number of cases. Infants if separated from tuberculous mothers at birth did not develop the disease. However, Bhatia (1938) considered heredity as a cause for the prevalence of tuberculosis in his book on unaini treatment of the disease.

Professional Understanding of Tuberculosis Over time, many scholars attempted to provide their thoughts and understanding of the causes and vulnerability associated with tuberculosis. However, these views lacked clarity, consensus and proof. Robert Koch claimed to had decoded the cause of tuberculosis, but it was still unclear as to who is to be blamed, the ‘bodies’ that are susceptible to bacillus attack or bacillus itself that caused bodies to fall prey. This murky understanding of the disease had a fatal effect on the treatment and protective measures around the tuberculosis discourse. Mukerjee (1930) wrote, ‘We all are inhaling the bacillus and it is our body resistance that is saving us. Increased incidence in us means bad body, and with it, poverty is correlated’. Dubos states, as ‘the diverse theories concerning the nature and spreading of the distemper

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determined the ways in which society tried to protect itself’ (Dubos and Dubos 1952). There have been divergent views among doctors and medical practitioners as well regarding the conception and contagious nature of the distemper. In the mid-­ sixteenth century, Hieronymus Fracastorius, a physician from Florentine, clearly expressed the theory of contagion of tuberculosis. France, Portugal, Italy, etc. accepted the contagion theory of the disease. George Sand (1804–1876) in writing on Chopin, with whom Madame Dudevant spent the winter (1839–1840) at Majorca, says the musician who was consumptive after leaving Paris for Spain was turned out of two houses as a ‘pest-breeder’ and threatened with prosecution for having them infected. The contagious character of phthisis was known since the sixteenth century, but this view and the extreme measures against the disease died by the late nineteenth century due to unsupportive character of British physicians. In 1860, Henry MacCormac wrote, ‘consumption, with all its frightful trait, is simply and truly a violation of the physical law of our being. Consumption is not communicated by any infection or contagion. Sufferer should spend as many time in open air in all season’. The leading physicians like Dr. Benjamin Rush (1808) and Sir Thomas Watson (1836) argued against the contagious theory of tuberculosis and did not believe in its nature of being infectious. This was happening in Britain even after the germ theory of disease was established in 1882 by Robert Koch. Choudhary (2008) reported a survey conducted by the British Medical Association. The Association in 1883 through collective investigation committee conducted a survey on the contagious character of tuberculosis among doctors. Out of 1078 received replies, 778 answers (72%) were given in the negative. Only 261 (24%) physicians supported the contagion theory of tuberculosis, while 39 physicians (4%) remained doubtful (Muthu 1922:4). This affected the British attitude towards the disease and the measures that were taken to control it in the United Kingdom as well as in the colonies. Stricter measures were taken to combat other contagious diseases like syphilis, but they remained silent and inactive on tuberculosis, even long after the infectious nature of the distemper was established. Dubos and Dubos (1952) contributed this inaction to different factors and put on record that ‘…in part because certain physicians were not entirely convinced of the contagiousness of phthisis, in part because the strict application of the edicts was too costly, also because so many personal interests were involved’. Indian understanding of tuberculosis in the nineteenth and early twentieth century was broadly guided by understanding of the colonial masters. The strong influence was not surprising given the fact that the British had direct control over the economic, social and public health policies. This gets reflected in Crombie’s report of 1899, which put on record that, Tuberculosis is a communicable disease, but it is not infectious in the popular sense of the world, in the sense in which scarlatina, mumps, and typhus fevers are infectious although the only scientific distinction is that the infectious material of tuberculosis is not so easily diffused as is that of the disease named.1

 Home/Medical-A/No. 95/October 1899, NAI, New Delhi; emphasis added.

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During the next decade or so, this view regarding the contagious nature of tuberculosis prevailed in India as is obvious from various archival records, despite British physicians accepting the infectious nature of disease as evident from one of the resolutions of British Congress on Tuberculosis for the Prevention of Consumptive. The resolution passed at the general meeting on 27th July 1901 recorded ‘that tuberculous sputum is the main agent for the conveyance of the virus of tuberculosis from man to man, and that indiscriminate spitting should therefore be suppressed’ (Home 1901a, b). There were repeated requests from professionals regarding this through the resolutions adopted in the annual meetings of the British Congress on Tuberculosis. The government did not make an active effort in combating the disease or making it compulsory to notify the incidence of tuberculosis as was done in case of other diseases like cholera or plague or syphilis. The Bombay Presidency initially used the compulsory notification of the disease but did not continue on the grounds that it incurred unnecessary economic burden on the municipality. The nature of the infection was more amongst Europeans in the initial phase (1840–1890), but later on, the native population was also equally affected. Despite higher incidence amongst European, the Government of India did not do much because of its conception of the disease, as even in Britain, it was only in 1913, when notification of all cases of phthisis was made mandatory. Some regarded tuberculosis as an infectious disease, while others believed it to be the product of the prevailing social and economic conditions in a particular civilization. This brought face to face the views of two opposite schools – the ‘specific school’ and the ‘social school’. One group believed that the disease was caused by the conveyance of tubercle bacillus from one person to another through the atmosphere or tuberculous food, and the only way to eradicate it was by destroying the source and channels of microbe dissemination. The other school maintained that it was mainly a disorder of nutrition, a diathesis brought about by poverty, worry and bad hygienic conditions, and the only way to deal with it was by improving the social and economic conditions of the people. The proponents of this viewpoint including Muthu and his colleagues maintained that tuberculosis was a disease of a civilization with vicious social and economic environment or poor and deranged nutrition; in fact, it is a deficiency disease affecting the body metabolism, the condition of the blood and the vitality to the system. Muthu (1922) on the basis of his long experience in different sanatoria in India concluded that ‘the germ theory of tuberculosis has not satisfactorily explained all the problems of the disease. The presence of tubercle bacillus is not a decisive factor in the development of tuberculous process’. He further stated that ‘we have made too much of microbes and too little of man in the causation of tuberculosis, which more truly lays within the body than outside. There is no valid proof that widespread prevalence of the disease is brought about in the majority of cases by its contagious character’ (Muthu 1922). Both schools had their own agenda to propagate. On the one hand, the spread of western medical advancements was the reason, while others were trying to take an example from the west itself where disease had declined much before the establishment of the cause of tuberculosis. Whatever the reasons for the ongoing debate, the debate itself was one of the most important and remained so even now after decades

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of scientific treatment of the disease with a high-quality antibiotic. Even today, there are two schools of thought, one engaged in killing the bacillus and the other interested in better nutrition, improved public health facilities and decreasing tension in social life. The knowledge about tuberculosis in India cannot be questioned. The only problem areas were the intervention by the state and the limitation of the colonial government in taking the appropriate measures to tackle the disease. Between the contagious and constitutionalist schools, there was a large body of moderates who believed that tubercle bacillus getting implanted in a soil already is weakened by poor and unsanitary conditions. Muthu considered that the attitude of the moderates though plausible was camouflage and tended to confuse the real issue (Muthu 1922). Tuberculosis was either a disease caused from beginning to end by the bacillus or was pre-eminently a disease that depended on the constitutional character of the human body. The professional containment efforts by the British Physicians were based on what Lissant Cox, the Central Tuberculosis Officer of Lancashire, summed as the foundation ‘find, isolate, educate and treat the adult positive case’ (Health 1938). It was widely accepted that early isolation is key to treat the tuberculosis cases, and medical officers including Cox (1938) reported that most cases die within five years of detection. As early as 1903 in a report to the then Government, the Director-General Medical Services, B. Franklin, wrote that ‘early detection of cases of tubercle is of value, but if the number of cases is too great for isolation, it may be borne in mind that it is the cases in which there is much coughing and expectoration from large cavities that are dangerous to their neighbours’ (Home 1903). Weight loss was considered one of the important symptoms, and it was suggested that in regimented settlements, like cantonment and prison, regular weighment can be a good means of detecting early cases. It is important to note here that the resources to treat patients or even to isolate them so that it does not spread remained a cause of concern as is clear from the note of the then Director-General of Health Services.

Isolation as Treatment In European countries like Italy and Spain, based on the theory of Hieronymus Fracastorius, they started practising isolation as a method of treatment for tuberculosis patients. The Republic of Lucca promulgated anti-tuberculosis legislation in 1699, which seems to be the first of its kind. Countries and states across Europe followed this initiative and outlined protocol to treat tuberculosis where ‘isolation’ was one of the important measures. Administrative authorities of Italian cities and the governing bodies of Spain were the important institutions who believed in the contagion nature of tuberculosis. In the year 1699, a group of physicians in Naples recommended regulations to the department of health and suggested that:

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1. Physicians shall report a consumptive patient when ulceration of the lungs has been established. Failure to do so entails a penalty of three hundred ducats for the first offence and banishment for ten years for repletion of it. 2. Household goods not susceptible to contamination shall immediately be cleaned and those susceptible at once be burnt and destroyed. 3. The authorities themselves shall replaster the house from cellar to garret, carry away and burn the wooden doors and windows. 4. The poor sick shall at once be removed to a hospital …. (Dubos and Dubos 1952:30, quoted in Choudhary 2008). Further, clear guidelines were framed to ensure isolation of the tuberculosis patients. Providing separate clothes for the consumptive patients was one amongst many such guidelines. It was also prescribed that in case of death of any tuberculosis patient, all used clothes are to be destroyed. Certain states across Europe enforced these regulations and continued to practice the highest level of segregation of such patients. Once opposition against this theory developed in the eighteenth century, slowly the isolation practice became almost absent. Despite the world moving away from ‘isolation’ as a treatment method, Italy continued to believe in the contagion theory of tuberculosis. We find several famous stories where the patients had to pay the cost of the house to the landowner as it was to be destroyed according to the orders of the local governing bodies (Dubos and Dubos 1952). In India, the first printed book ‘Phythisis and its cure’ (Anonymous 1907) clearly wrote, That the expectoration of consumptive in which tubercle bacilli are found in large number is very infectious. It should be received in spittoons containing some disinfectant liquid e.g. Corrosive sublimate and carbolic lotion.

The contagious character of tuberculosis in India remained prevalent for decades until recently. People diagnosed with the disease were sent to outhouses or in huts on the margins of the villages in fear of them infesting patients. During colonial period male members of the family if infected were sent to these huts, and female members were sent to their parent’s village as in their husband’s village they were not supposed to live outside. Isolation often gets associated with ‘good environment’. Often British Physicians argued that ‘a good environment is of great importance as a factor helping to further the prevention of tuberculosis. The most striking combination of a very good environment with isolation of the patient is the village settlement’ (Cox 1938). The idea got translated in India in the form of finding a suitable location in ‘remote areas’, i.e. far away from the large urban centre, which usually were in mountainous regions of north, south, eastern and western parts of India.

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Sanatoria as a Site of Treatment The first government sanatorium was opened only in the year 1917. Private and missionary efforts prevented the situation to go completely out of hand. With permission from the government but without any support from the government, the first sanatorium in the country was opened at Dharampore near Shimla in 1909 with a keen interest of Mr. Malabari of Patiala. But after his death, the institution suffered financial setbacks, and by the year 1916, its future seemed bleak without more generous support. Another important sanatorium was established at Tilonia near Ajmer under the auspices of the American Methodist Episcopal Mission, but this was limited for girls of the school and orphanage run by the mission in north India. Another missionary run sanatorium was established at Almora under the auspices of London Missionary Society but again was limited for the Christian women only. Bhowali was probably the first institution set up under the provincial government’s auspices but built and endowed mainly by private endowments to treat tuberculosis patients. Lankaster compared it with the best of sanatoria in the west. Apart from these, there was one sanatorium at Madanapalle in South India run by various missionary societies working in Madras and another at Lonavla near Pune. Various other institutions were in operation and were run either on the complete philanthropic basis and some with an aim that combined profit with philanthropy. In 1916 to a question in parliament, the government replied about the number of tuberculosis sanatoria as follows: Madras – 1, Bombay – 3, U.P. – 2, Punjab – 1 (all private), other provinces – Nil. and the well-known Lankaster report in 1912 noted that, Sanatoria for the treatment of consumptive patients under open air conditions are at present few and far between in India, there being not more than one bed for about a million and a half of the population.

A majority of the beds were available on payment basis only, and there was no facility available in the form of open-air treatment for the people who were unable to pay the charges. There were a few seats available free of cost in Bhowali sanatorium, but the charges incurred on food and accessories while staying in the sanatorium were too costly and unaffordable for the common man. The argument for the limited number of beds for the common people was that the beds remain vacant, as the common people did not come for the treatment, because they either were ignorant about the treatment or simply were unable to pay the charges of the sanatorium. Further, Simeons (1933) questioned the effect of fresh air and climate which were thought to be the basis of the establishment of a sanatorium, when he wrote, ‘what it really boils down to is that whether a well-run sanatorium establishes a reputation, there the climate is believed to be particularly salubrious…more depends on the management of the institution than on the climate in which it is established’. In India, the sanatoria were established in the Himalayas, where pine trees were in abundance, or alternatively in the regions of the Eastern Ghats in South India, or in Lonawala near Bombay or in Chhotanagpur region. All these regions were chosen due to their suitability of the site, especially the climate. It has been established that these sites in turn also resulted in the spread of disease in the regions which

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otherwise were considered virgin land, as tuberculosis was not reported to be prevalent in these regions. Simeons (1933) wrote, My personal experience in the European Lowlands, in the Swiss Alps, in the humidity of Indian coast, and in the dry, dusty heat of Indian plains leads me to conclude that – always provided management is first class  – tuberculosis patients recover faster in the tropics. Though we may be skeptical about the therapeutic value of climate as such – abrupt change of climate is physiologically stimulating…the common phrase ‘you need a change of climate’ is quite correct, but problem of acclimatization benefit of a given climate is not absolute and is relative. It would be quite wrong to transport patient from one place to another merely for the sake of a temporary stimulus.

The entire euphoria of sanatorium being located in the ‘suitable climate’ was questioned in the 1930s. The report of 1932 showed that each province of India had one or more than one sanatorium in each of its provinces. However, knowing the size of the population of the country and the availability of beds for common people in the existing sanatoria and the facility was highly inadequate, especially given the fact that one has to pay individually. This, what we today call ‘out-of-pocket’ expenditure, means only a rare few could afford the living cost in the available sanatorium.

Preventive Public Health Measures Early detection of the disease remained the key to the success of this kind of combative measures, and this remained vital even after the invention of antibiotics. The problem lied in the detection of the disease as the normal symptoms of ‘Kshyarog’ was fever and Indian traditional practice used to keep patients on fast during fever. So the prescribed treatment instead of being more nutritious is used to become less notorious with more of physical exercise. There was virtually no cure for the late detection of the disease. Before the invention of antibiotic, it depended more on the timely detection of the disease as noticed by almost all physicians including the practitioners of traditional medicines. In the year 1895, the invention of X-ray by Prof. Roentgen brought almost a revolution in the field of tuberculosis treatment. Early detection of tuberculosis was now possible with the help of X-ray. The machine was brought to India in the first decade of the twentieth century at a laboratory in Madras, and later different tuberculosis hospitals started its use. The sputum test was known to the professionals in the country, and various laboratories used to perform the test, and in the later period under the governmental intervention, it was done free of cost for the patients referred to by the qualified doctors. But the question remained if the facility was limited for the patient who could afford to consult the private doctors at that time. There was an obvious scepticism about the curability of the disease in different reports. Crombie in 1899 accepted that the condition had become ‘favourable than before’ and ‘cure’ could be attained in clinical sense, i.e. local symptoms would pass away and patients could resume the normal work. It was not only in India but also even in Britain the practising physicians were holding similar views about

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pulmonary tuberculosis. Cox, a central tuberculosis officer in the Lancashire County, had held similar views even in the year 1938 when he wrote that about 63% among the definite cases of pulmonary tuberculosis succumbed to death due to tuberculosis within five years from detection.2 It is important to bring to light here is the part of the report that was submitted to the Director General Medical Services on tuberculosis in jails in India. The report of 1900, made a point, It is a startling fact and once contrary to the accepted belief that the death-rate from tubercle in Indian jails is notably higher than that of England and Wales among the population of the same age-periods, viz. 15–55; in India for 1899 the rate per mille is 2.49 while for England and Wales in 1898, it was 2.04. the whole question of prevention of this disease is receiving the greatest attention all over Europe at the present time, and we know that while the specific cause is fairly ubiquitous it depends largely for its pathogenic effect on an atmosphere vitiated by damp and dust, and by the association of large numbers in confinement, on defective ventilation, a wide diurnal range of temperature and insufficient nourishment. (Home-Medical 1901a)

The report further said that tuberculosis qualifies to be specific infectious disease; the assertion is different from that of the British physicians who did not agree about the infectious nature of the disease. The report not only supported isolation of patient as a measure but also argued for better ventilation and other sanitary provisions. For the treatment, a combination of measures was suggested that included ‘open-air treatment’ along with dietic, physical and appropriate therapeutic measures. On dietic measures, different combinations of nutritious food ranging from milk, ghee and meat to defined quantity of cereals were suggested by different agencies. In another report on a jail in Punjab (1913), W.H.C. Forster, who was professor pathology at Lahore Medical College, wrote that increased incidence of tubercle in the jails is not the result of the increased incidence in the general population. The increase, however, is the result of the same condition as the increase in the general population. He pointed out the lack of ventilation of the barracks under cold weather condition along with overcrowding and the lack of pre-admission examination of the convicts and undertrials. He gave long suggestion including reducing overcrowding, ventilation, improved diet, improving general sanitation and disinfection (Home – Jail B 1914). Sastri in 1934 suggested Yogic treatment for patients suffering from early and advance stage of tuberculosis. Dr. Khambata (1934) in Amrit Bazar Patrika highlighted the use of various forms of milk and open air and said that ‘… and the recent Bratachari moments of songs and folk dances ought to go for a great way towards ameliorating the ravages’.3 The ecological or epidemiological aspect of disease talked about the living conditions of the patients where bacillus could grow faster or its spread could be checked with success. Crombie in his report advocated about the change in the site of the patients that is required for a suitable treatment regimen. His report was the first report in India which is available today, and it is noted in the report that  G.L. Cox reported in the Health/1938/37 – 9/38 – H, NAI, New Delhi.  B.P. Khambata (1934) Amrit Bazar Patrika.

2 3

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isolation; application of tuberculin test for detection of bovine tuberculosis; amelioration of the conditions of life among poor; regular food supply; disinfection of sickroom; and removal, disinfection and destruction of expectoration are to be applied for the treatment of the patient (Choudhary 2008). Similar suggestions were made in reports that followed in later years including Lankaster Report (1912/14) and Cummins Report (Cummins 1932). The repetitive suggestions in successive reports in a way also indicate inaction on part of the Provincial and Union Governments in India. The attitude of Government of India as well as that of various provincial governments and their reaction(s) towards reports of various committees that were constituted to investigate the incidence of tuberculosis did change over time. In 1901, the resolution passed at the general meeting of the British Congress on Tuberculosis included such measures as, That in the opinion of this congress, overcrowding, defective ventilation, damp and general insanitary conditions in the houses of the working classes diminish the chance of curing consumption and aid in predisposing to and spreading the disease.4

The response to such resolutions by the Government of India and provincial and local authorities needs attention to understand the reason why the so-called efficient state machinery failed on the front of public health grounds. There was a tendency to pass on the responsibility to the other subordinate authority that did not have the means and methods to implement the regulations. Municipalities in British India could work without having any by-laws, but if they formulated any, it needed the approval of the provincial and the central government. Whatever by-laws existed, they were inadequate and existed only on paper but could not be enforced in practice. One of the reasons for such a situation was highlighted as the ‘helplessness’ of the Chief Medical Officer of Health as he used to be on the mercy of the local authority. In Madras, the Chief Medical Officer was a government servant but was unable to take the necessary action from a public health viewpoint. Secretary of state in India responded to the resolutions passed in Britain in a manner that can be taken as one way to approach the problem ‘a great many of those proposals are not possible of general adoption in India, …adopted as the basis of the policy for the suppression of tubercular disease, and if little can at present be done in India, these resolutions will perhaps stimulate Superintendents of Jails and Civil Surgeons to renewed efforts on the lines indicated…’.5 Public health measures required direct intervention from the government for almost all channels right from notification to implementation of building by-laws to check overcrowding in public space. Indians were aware of the fact that the formulation of bye-laws itself was bound to be ineffective unless the Government of India took a direct interest in the implementation of such by-laws to reduce overcrowding and end close streets and other such measures. Despite the appreciation of earlier work of the state, the government’s intervention in the eradication of tuberculosis was not effective, and there was a silent antagonism and sometimes vociferous  Home/Medical –A/October, 1901a, No. 96-103/NAI, New Delhi.  Home/Medical –A/October, 1901a, No. 96-103/NAI, New Delhi.

4 5

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opposition to this. The letter from the Muslim Association, Peshawar, was probably the most direct when it argued that, The association apologize for remarking that had the present situation of increasing mortality occurred in any country in Europe it is a fact that the King and the Government of the country would naturally have felt extreme anxiety for their Nation and would have made immediate arrangement to meet with the requirements of the case. It is indeed a bad luck for the people of India that the present government treat them differently and not with the same degree of sympathy as they would in England even in a matter which concerns their life and death.6

These kinds of reports perhaps were not sufficient to motivate the government to take action despite the fact that in writing Government of India welcomed the suggestion regarding the efforts that could be taken up to combat the disease. The governor general said in reply to one such letter from the State of Patiala that ‘… his Excellency (Viceroy) informed advice is always welcome to our council, and personally I have never lost time in following it’.7 The responses from different provincial governments to the suggestion on implementation of the by-laws became more realistic in 1940. Central Advisory Board of Health in 1941 put up a note with regard to the effect of bad housing and overcrowding on tuberculosis to Government of India. Various provincial governments gave a positive reply regarding implementation of the by-laws and highlighted the cooperation shown by the government, local bodies and non-profitable organizations involved in a tuberculosis control programme. Central province and Berar government in 1941 accepted the suggestion to implement the recommendation of Central Advisory Board of Health and stated that there is cooperation among Provincial Tuberculosis Association, Director of Public Health and Local Self-government Department. Punjab government proposed its new Municipal Act to empower municipal committees to limit the number of persons, who may occupy a house. Madras government too proposed enactment of the Madras Town Planning Act in 1920 to improve the sanitary conditions of the city.8 Constitution of various anti-tuberculosis leagues and holding conferences at the national level throughout the country and provincial level seminars in different provinces played an important role in controlling the menace to a certain extent at least with regard to spreading awareness among professionals. The first such league was the ‘consumptive home society’ of Bombay, which was responsible for the functioning of the first-ever sanatorium in the country at Dharampore. The efforts remained confined mainly to philanthropy, and the government on some or the other pretext denied or deferred the holding of such seminars despite allowing discussion on whether or not there should be a conference at the national level in the national assembly. On March 7, 1927, Mr. Haroon Jaffer initiated a debate in the Council of State suggesting to the governor general to take immediate steps to call a conference 6  K.S.  Qazi, F.  Ahmad Khan in 1931 through a letter to the chief secretary, NWF province, Health-B/September 1931/No. 365-366/NAI, New Delhi. 7  Home/Medical – B/July 1912b/No. 2, NAI, New Delhi. 8  Health/1940/29-12/40 – H/NAI, New Delhi.

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to discuss the question of the provision of tuberculosis hospitals, sanatoria and institutions for a comprehensive immediate action. The extract of the council debate was circulated to all provinces, and Public Health commissioner noted that There is no question of research per se involved in the attack on Tuberculosis. …this is largely one concerned with the economic upliftment of the people. His original proposition for establishing a chain of sanatoria only meets small part of eh difficulties.9

The basis of his opinion was negative reports from the provinces of Madras and Delhi and an indifferent report from Uttar Pradesh. The positive reports of other provinces with some remarkable suggestions like involving social reformers in the eradication programme were ignored not without purpose. The Secretary in the Department of Health, Education and Land agreed with the view of the Public Health Commissioner and wrote that ‘a conference should be held this year only if His Excellency has decided to launch an appeal in connection with a Tuberculosis campaign; a conference and an appeal would go well together’ (Health 1928). This was the opinion of the state when a conference was to be held in the country, but a contrasting report was found when the British Congress on Tuberculosis was to be held, and it was noted that the Indian Princely States should be respectfully invited because they were ‘of very great support’ to the last Hygiene Congress.10 Simeons (1933) a medical doctor, who was practising in India, wrote that ‘our knowledge of disease, its threat and control does not make steady progress. New discoveries bring us forward with a sudden bound. Then we settle down to appreciate the fruit of such discoveries. Sudden unexpected progress monopolies our imagination’. The reported inconsistency in the fight against tuberculosis has been the benchmark therapeutic methods. Even after the introduction of chemotherapy, such inconsistency continued, though there was more monopolistic and singular way forward measure being supported by a larger body of medical professionals.

The Magic Bullet The combination of these different therapeutic measures continued with certain timely modification until the invention of streptomycin in 1944 that acted as a powerful antibiotic against the bacillus. Doctor J.D.  Ross (1958) while assessing the outcome of medical improvement wrote, ‘During the past decade the outlook for the tuberculosis has improved enormously. Our sanatorium wards radiate a careful confidence and death which once rode on every passing breeze is now the rarest of visitor…chemotherapy has achieved pride of place in our therapeutic armamentarium’. First major success for effective anti-tuberculous came when Waksman isolated streptomycin from fungus Streptomyces griseus. The first clinical trial on human came in 1945 providing a powerful weapon though with a known  Health – B/May 1928/No. 203-216/NAI, New Delhi.  Home/Medical/July 1901b, No. 97-108, NAI, New Delhi.

9

10

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drawback – toxic effect. As time progressed, it becomes less effective, and clinical relapse started being reported, and resistance becomes permanent. The situation was tacked with simultaneous use of two – streptomycin and isoniazid. In the 1950s it was reported that if the bacillus gain resistance against one, the other will destroy it, and there is a very rare chance that a bacillus grows resistance to both. It was also the time when India attained independence and the new government came to power with more hope from its own people as well as the larger world that the new sovereign government would take better care of its own people. Availability of the chemotherapy only added to such expectation that the nightmare for the people suffering from the menace of tuberculosis would be a thing of past. The fact remains that tuberculosis as a disease was countered worldwide with the help of preventive and public health measures rather than by chemotherapy alone. If one takes a radical view advocated by McKeown and others, it was the increasing nutrition level that prevented the population from getting infected. When the disease was almost brought under control in Britain, Cox, the physician, accepted that, While methods of diagnosis have improved, while new methods of treatment are tried and not without success on individuals, it still remains that the best result in anti-tuberculosis work obtain by detailed, unobtrusive and continually applied measures for the prevention of this disease. (Health 1938)11

Combative measures during pre-independence era initially had two dimensions namely ‘public health’ and ‘ecological’ or ‘epidemiological’. But in the later period, there had been the inclusion of the third dimension, which has now become more dominant if not the only one, that was ‘biomedical interventions’. Various kinds of inoculation and tuberculin testing were important along with certain forms of concoctions to be taken as medicine against tuberculosis.

Conclusions The spread, containment and treatment of the disease were not limited to how the medical fraternity both Western and Indian viewed, understood or spoke about tuberculosis, but it also throws light on how collectively as a society one took responsibility of a calamity, whether it shamed the victim, confined them in isolation to die, hoping it does not spread further or accepted the problem, worked towards undoing the causes and viewing the victim as a sufferer rather than a carrier of germs. The responsibility of the cure was another important point to be highlighted. It is interesting to note who took the onus of the cure, was the effort to not fall sick lied with the victim, their own heredity, disposition or their so-called reluctance to take in enough fresh air, or it can be seen vested with the government, to provide enough clean space, air and working environment for its people. It also  G.L.  Cox ‘Tuberculosis Control’, The British Journal of Tuberculosis, reported in the Health /1938/37 – 9/38 – H, NAI, New Delhi.

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spoke volumes about government agencies as policymakers, faulty record keeping and the outcomes of prolonged denial of destruction. The debate on the various conceptions of tuberculosis and the measures that were taken to combat the menace clearly indicate two diverging systems of health and medicine. The earlier identified division between ‘medicine of the species’ and ‘medicine of space’ found to be prevailing.12 Medicine of species, which is concerned with the biomedical tradition and pertained to the strong emphasis in Western medicine upon classifying diseases, diagnosing and treating patient and finding cures, was getting highlighted by the first few decades of the twentieth century in India. Medicine of social space that is concerned with preventive measures by improving the social, physical, and behavioural surroundings through interventions from governmental and civic bodies remained confined only in the reports that were submitted to the then government. India was a colony of Britain during the period when Europe had experienced two separate developments: (a) there was reduction in mortality and morbidity due to increase in the general level of nutrition, and (b) there was incidence of diseases in the temperate world of other ecological surroundings, the so-called ‘tropical diseases’, due to an increasing interaction between the tropical and temperate regions. The environment in India changed in all aspects in terms of the physical environment as well as the social environment. There were efforts to generate some kind of records for the jails and the cantonments, which consisted of not more than 2% of the total population. Rest of the population probably did not count for the Empire as their listing was not done. No information is available that can be taken as a reference point for the morbidity of the general population. The transition from the indigenous to the Western system of medicine was taking place simultaneously when there was an occurrence of the epidemics like cholera and plague. There were efforts, philanthropic or otherwise to combat such diseases. The debate concerning these diseases and related combative measures involved the medical, political and social spheres of society. However, it would be naive to think that the entire social life or political spectrum or for that matter all medical men were involved in the process. The debate remained centred in the urban areas and the measures, especially the ones related to public health remained limited to urban centres. Tuberculosis despite being epidemic in character did not attract the required attention in the public health debate or in the planning of combative measures. The cases were generally reported late. The cure was available only in the form of prevention, and there was no cure for late detection. The evil travelled to the rural hinterland silently but severely and increasingly. The increasing movement of people from the rural areas to the urban centres for new kinds of jobs and the enhancing communication of the rural hinterland with the urban centres played as a catalyst to the process. The desire of the sick to die at the birthplace also added to the ongoing spread. The combative measures that started with the establishment of sanatoria, too, facilitated the spread of the disease, by exposing the virgin land and the virgin people to the

 M.  Foucault (1975) ‘The Birth of The Clinic: An Archaeology of Medical Perception’, Vintage, London.

12

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bacillus. The opening up of sanatoria in the favourable climate and approving locations brought the diseased to the so-called favourable location for the treatment. The correspondence between the professionals and political circles showed that the ideas of exposure or the threat to infection were already there. At the time of opening of the first sanatorium at Dharampore, the medical officer of the area suggested that the institution should not be brought here, as the diseased people coming here for the treatment would become the cause of the infection to the innocent people living here. The suggested measures to combat tuberculosis included education about tuberculosis, defining working space for the factory workers (The Factory Act, 1894), checks on overcrowdings, clearing of the houses on the dead end of the streets, checking indiscriminate spitting and seclusion of infected children from school and infected person in the army and prisons. These responsibilities, however, were passed on from one authority to another, like clearing of houses and complying building by-laws were left to local bodies. In some of the cases, doctors were told to notify the disease. But when they asked from the state to hand over to them the sanitary powers for the fruitful implementation of their proposals, it was not done. These measures, whether taken or suggested, were targeted efforts to control the spread of the bacillus and make people safe by restricting the exposure. The contrasting position of professionals regarding the incidence of the disease in different parts of the country is noticed. The general view among the professionals and the available evidence do suggest that there was an increase in the number of infected people across the country. The increase in the incidence was reported in India at a time when Europe had already witnessed a decline in the rate of infection and also in total infected cases. A similar trend was noticed in America. The fall in the phthisis was achieved much before tuberculin bacillus was discovered. In India, the cases of tuberculosis were on the rise as there were neither any serious public health efforts nor the economic condition of the mass was getting better in spite of surplus of revenue collected from agriculture in some of the years. The economic history of the late nineteenth century of the country suggests that there was a decline in the real income of the people and the price of food grains was escalating. The average income in real sense was going down. Report on an enquiry into working class of Bombay by Bombay Labour Office in 1923 highlighted that daily food-grain consumption of a common worker was lower than the level of food-grain consumption in the jails or even the consumption of cereals during a famine. The problem of the care of the poor patients remains as acute as ever and doctors and professional in their writings clearly visible as one of the doctor Simeons (1933/1949) wrote ‘what we need is a higher standard of living is almost cynical in our world of today’. The lack of concern can be attributed to the colonial rule and their apathy towards the colonial subjects. The next chapter discusses the efforts which were undertaken during the last seven decades of postcolonial experiences.

References

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References Anonymous. (1907). Phthisis and its cure. Moungure: K.C. Roy and Co. Arnold, D. (1989). Imperial medicine and indigenous societies. New Delhi: Oxford University Press. Bhatia, P. C. (1938). Unani treatment for tuberculosis. New York: McGraw Hill. Choudhary, B. K. (2008). Colonial policy and spread of tuberculosis: An enquiry in British India (1890-1940). Journal of Health and Development, 4(1–4), 65–86. Cox, G. L. (1938) Tuberculosis control, The British Journal of Tuberculosis. Delhi: NAI. Crombie. (1899). Report on the recent congress on tuberculosis at Berlin with special reference to the prevalence and prevention of the disease in India to the Government of India in October. Home/Medical-A/No. 95/October 1899. New Delhi: NAI. Cummins, S. L. (1932). Health/1932, 79/32-H. New Delhi: NAI. Dubos, R. (1959). Mirage of health. New York: Harper and Row. Dubos, R., & Dubos, J. (1952). The white plague: Tuberculosis, man and society. Boston: Little Brown and Company. Fairchild, A. L., & Oppenheimer, G. M. (1998). Public health nihilism vs pragmatism: History, politics, and the control of tuberculosis. American Journal of Public Health, 88(7), 1105–1117. Farmer, P. (2001). Infections and inequalities: The modern plagues. Berkeley: University of California Press. Health, No. 79/32 – H, 1932, NAI, New Delhi. Health (1928) Health, May 1928–203-16, part B Resolution in the council of state recommending the calling of a conference to consider the measures for the prevention of TB. New Delhi: NAI. Health/1940/29 – 12/40 – H/NAI, New Delhi Home. (1899). Crombie. 1899. Report on the recent congress on tuberculosis at Berlin with special reference to the prevalence and prevention of the disease in India to the Government of India in October. Home/Medical-A/No. 95/October 1899. NAI, New Delhi. Home/Jail-B/No. 20/March 1914/NAI, New Delhi. Home/Medical-A/No. 173-174/March 1899/NAI, New Delhi. Home/Medical-A/No. 96-103/October 1901a, NAI, New Delhi. Home/Medical-A/October, 1901b, No. 96-103/NAI, New Delhi. Home/Medical-A/No. 99-1000/September 1902a/NAI, New Delhi. Home/Medical-A/no. 19-32/January 1902b/NAI, New Delhi. Home/Medical-A/May 1912a/No. 40-64/NAI, New Delhi. Home/Medical-B/July 1912b/No. 2, NAI, New Delhi. Home/Medical/1913. Home/Port Blair-A/ No. 19-21/November 1903/NAI, New Delhi. Home/Sanitary-A/No. 207-214/October 1899/NAI, New Delhi. Judicial/No. 133-140/July 1894/NAI, New Delhi. Khan, S. F. Quazi Ahmad 1931 through a letter to the chief secretary, NWF province, Health-B/ September 1931/No. 365-366/NAI, New Delhi. Leiban, R. W. (1977). The field of medical anthropology. In D. Landy (Ed.), Culture, disease and healing: Studies in medical anthropology. New York: McMillan. McKeown, T. (1976). The role of medicine: Dream, mirage or nemesis? London: Nuffield Provincial Hospital Trust. Mukerjee, J. (1930). Tuberculosis and its early diagnosis and treatment (p. 23). Calcutta: Shree Sharaswaty Press. Muthu, A.  C. (1922). Pulmonary tuberculosis: Its etiology and treatment. Tindall and Cox: Bailliere. Nezlin, S. E. (1955, July). Medical and educational work in control of tuberculosis. Meditsinskaia Sestra. (7), 17–21.

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Pearson, K. (1912). Tuberculosis, hereditary and environment. London: Dulau and Company. Ross, J. D. (1958). Modern drug treatment in tuberculosis. London: NAPT and disease of Chest and Heart, Tavistock. Simeons, A. T. W. (1933/1949). The conquest of tuberculosis. Calcutta: Thacker Spink. Sprawson, C. A. (1938). Peculiarities of the tuberculosis problem in India. The British Journal of Tuberculosis, 128–134, taken from Health, No. 37-9/38-H, 1938, NAI, New Delhi. WHO. (2018). Global Tuberculosis Report – 2018. Geneva: WHO.

Chapter 5

Combating Tuberculosis in Independent India

Early case detection and rapid treatment predominantly chemotherapy continue to remain the cornerstone of the tuberculosis control strategy. With the incidence of tuberculosis declining at a snail pace, it is somewhat certain that tuberculosis is anything but getting eliminated before 2050. India has the world’s highest burden of tuberculosis. It kills one person every 2 minutes in India and 750 people every day. Global tuberculosis control is unattainable without enhanced control of the disease in India, as about a quarter of death and every fifth patient of tuberculosis is in India  (DGHS, 2017a). When the National Tuberculosis Control Programme was introduced in 1962, India was one of the worst places in the world in terms of incidence and morbidity from the disease.1 Unfortunately, even today, the situation is more or less similar, despite aggressive BCG campaign in the 1950s and almost universal DOTs intervention since 2006. The vast diversity of physical setting and the divergent social and cultural practices along with the increasing economic gap among people are some of the salient characteristics of the country. Lacks of information on health and disease at a segregated level and the data regarding positive aspects of health pose a big limitation on understanding and analysing combat measures across different geographies. We have to depend either on case studies or government and non-governmental reports. This chapter has considered available sources; hence, the analysis cannot be said very comprehensive but does indicate the major trends and directions of combating tuberculosis since independence. Tuberculosis since Crombie’s report of 1899 was considered a disease spreading across towns and villages in India. Ukil (1949) unequivocally considered tuberculosis as the most widespread communicable disease which is yet to be conquered. In the TB Worker’s conference, he said, 1  National Tuberculosis Programme was introduced in 1962 with an aim of systematic reduction of tuberculosis. India accounts for about one-third of the global burden from tuberculosis and is among the highest morbid regions; for details of the statistics, see ‘TB India 2004: RNTCP Status Report’, DGHS, Ministry of Health and Family Welfare, Delhi, TB India 2017, TB Research Centre, DGHS, Ministry of Health and Family Welfare, Delhi.

© Springer Nature Switzerland AG 2021 B. K. Choudhary, Ecology of Tuberculosis in India, Global Perspectives on Health Geography, https://doi.org/10.1007/978-3-030-64034-7_5

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5  Combating Tuberculosis in Independent India Out of 20 million deaths from tuberculosis in the World today one million is estimated to occur in India. By adopting certain acknowledged procedures, the death rate per 100,000 population has been brought down to 42  in New  York City, 44  in Copenhagen, 132  in Glasgow and 135 in Rome, while it is still 275 in Warsaw and perhaps higher in Indian cities (Ukil 1949: 10)

Dr. A. C. Ukil has spent a sufficient number of years in India studying tuberculosis and actively participating in prevention efforts by his own admission. He advocated of using the western experience of 100 years in fighting the disease. However, what he presented in 1949 was primarily as professional and technocentric argument to contain tuberculosis. While comparing European situation, he claimed that the prevalence of the disease in India is lower than that of Europe; still, it has engulfed agriculture, industry alike owing to the interlinkages from industry to agriculture to trade. Ukil (1949) and professionals like him clearly argued that the control of tuberculosis in any country has to be a statutory responsibility of great importance to the public health authorities. The state was considered responsible for not only the financial part but also technological, research and organizational support. Dr. P. V. Benjamin (1949), who was a tuberculosis advisor to the Government of India, highlighted the priorities of anti-tuberculosis campaign consisting of two aspects: ‘(1) the human or humanitarian aspect, (2) the public health aspect of the problem. Interestingly, the human aspect of the problem meant clinical intervention to Dr. Benjamin as he explained the human aspect as ‘providing relief to the suffering individual or in other word running hospitals’. When India started containing tuberculosis, it was fully aware of the nature of the problem it had at hand to deal with, as even Dr. Benjamin on record said, ‘improving the standard of living is admittedly one of the important factors connected with tuberculosis control’. However, he was quick to point out that improving housing condition may require ‘5000 to 10000 crores of rupee’ and improving nutrition may require an additional 200–300 crores rupee per year. A minimum of 5–10 anti-tuberculosis centres along with about 4000 clinics were needed with 500,000 beds; the estimated budget for these was less than the budget required for improving nutrition and housing. The priority of the country was to contain deaths, and they choose in favour of chemotherapy and vaccination rather than improving nutrition and living conditions. The analysis of last 7 years (1942–1949) showed the addition of about 700 beds, and Benjamin was quick to say it would take about 5000 years to add the required number of beds, and therefore, it was decided that at least 3000 beds per year were to be added. The hospitals connected to cities and towns were to be dedicated to treating poor patients who were destined to live in unhygienic condition. It was argued that well-to-do patients can continue treatment at their homes only as they do not need hospitalization.

National Tuberculosis Control Programme

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National Tuberculosis Control Programme As already mentioned, tuberculosis is a major public health problem next only to malaria. The economic loss is enormous. The different measures adopted by the government to combat the disease since the first five-fear plan can be classified into general and special. The measures directed towards the improvement of the standard of living come under the general measures. These include improvement of nutrition, housing and sanitation each involving large-scale financial commitments. The provision of isolation, treatment of the sufferer and introduction of the preventive measures can be included under the special measures.2 In the first five-year plan, emphasis was laid on the preventive measures because they would be expected to the yield best returns in the long run.3 The plan accepted constraints of the limited resources available at that time but suggested the government to take preventive measures along with curative measures. Government of India entered into an agreement with UNICEF and WHO to carry out a countrywide BCG vaccination programme. The programme continued in the subsequent plan. In 1962, the National Tuberculosis Control Programme (NTCP) was implemented in India. The National TB Programme (NTP) of India was originally designed for domiciliary treatment, using self-administered standard drug regimens. The National Tuberculosis Control Programme has two specific objectives: • To identify and treat as large a number of tuberculosis patients as possible so that infectious cases are rendered non-infectious • To reduce the magnitude of the tuberculosis problem in the country to a level where it ceases to be a public health problem Since its inception, the programme was integrated with primary health care delivery system and implemented through district tuberculosis centres, which were manned by trained medical and paramedical personnel and had laboratory facilities for diagnosis. At the national level, there was the Tuberculosis Division in the Directorate of Health Services. Two institutions, namely, National Tuberculosis Institute, Bangalore, and Tuberculosis Research Centre, Madras, were acting as nodal advisory and monitoring bodies. In the next five-year plan, the NTCP was included in the 20-Point Programme, and a thrust was given for the expansion of the ‘essential activities’ under the programme. The programme was implemented on a fifty percent cost-sharing basis between the centre and the states. A review of the programme during the eighth plan revealed that in the existing treatment procedure, completion rate by individual patients was less than 30%. There was a shortage of

 First five-year plan, Planning Commission, Government of India, p. 502.  Various states were classified in Part ‘A’, ‘B’ and ‘C’. West Bengal was given the highest provision followed by Bihar, Madhya Pradesh and Bombay in part ‘A’ states. Among part ‘B’ states, Saurashtra was given the highest preference with Mysore and Hyderabad next. While for the remaining Part ‘C’ states, the greatest emphasis was on Delhi. Source 2 3

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drugs, good quality microscopy and other related facilities. Khatri, G.R., and Frieden (2002: 1420), while assessing a decade of RNTCP, wrote about NTCP: A comprehensive review of the tuberculosis program in India in 1992 found that less than half of patients with tuberculosis received an accurate diagnosis and that less than half of those were effectively treated. Laboratory services were underutilized, treatment regimens were unnecessarily complicated, drug shortages were common, and completion of treatment was not systematically assessed.

The NTCP might have failed to deliver a country without tuberculosis or to bring down the level of tuberculosis prevalence at a level when it is no more considered a public health problem; it did intervene. By 1978, the programme covered 390 districts of the country (81%) with self-administered 12–18 months treatment regimen based on the available combination of drugs, developed by TRC Madras (WHO 2007). The major issue with the programme remained a low detection rate and poor adherence to the suggested regimen. In the year 1983, a new regimen containing rifampicin and pyrazinamide reduced the length of medication to 6 months which was known as short-course chemotherapy (SCC). TRC conducted trials for the same, and by 1986, it was extended to 252 districts, but only had a marginal success in ensuring compliance of the suggested medication for the full-length duration of 6 months.

Revised National Tuberculosis Control Programme: DOTS A combined review of the program in 1992 concluded that the NTP could not achieve its objectives of TB control. Based on the findings and suggestion of this review committee, a revised strategy for the National Tuberculosis Control Programme (RNTCP) was evolved was pilot-tested in 1993. A full-fledged program was started in 1997 and rapidly expanded with desired results from the pilot phase (Purty 2018). This Revised National TB Control Programme (RNTCP) that uses the directly observed treatment, short-course chemotherapy (DOTS) strategy achieved country coverage on World TB Day, March 24, 2006. The program claims to achieve several milestones related to diagnosis and treatment services of TB since 2006. Since inception in 1997 and up to December 2015, more than 19 million patients were initiated on treatment, and more than 3.5 million additional lives have been saved (Purty 2018). Annual report of the government of India in 2017 claimed that ‘since inception, the programme has treated more than 20 million TB patients’ (TB India 2017). The programme aims to achieve ‘universal access’ for quality diagnosis and treatment for all TB patients in the country. The objective of RNTCP was to emphasize the cure of infectious cases through the administration of directly observed short-course chemotherapy (DOTS) to achieve a cure rate of above 85%. The other objective was to increase the case detection levels to 70% of estimated cases, after achieving the desired rate of cure. A long duration of treatment, an irregular supply of drugs, poor follow-up of patients under treatment and the lack of

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counselling regarding adverse consequences of incomplete therapy were some of the major factors responsible for the low treatment completion rates (Planning Commission 1997). The RNTCP was drawn with emphasis on: (a) Diagnosis through sputum microscopy (b) Uninterrupted supply of drugs for short course chemotherapy (c) Direct observation of treatment with short-course chemotherapy (DOTS) to improve compliance (d) Systematic monitoring, evaluation and supervision at all levels The RNTCP was initiated on a pilot basis in Phase I, in 1993–1994, in five project areas of Delhi, Bombay, Calcutta, Gujarat and Bangalore covering a population of 2.35 million. The areas were selected where basic health infrastructure was adequate to deliver the results or in others where drugs can be distributed and the required test facilities are available. The results from the pilot stage were reportedly on the expected lines. It was this success of Pilot Phase I that encouraged the government who decided to extend the revised strategy to 17 project sites, covering a population of 13.85 million as Pilot Phase II. These project sites showed a cure rate of over 80%. The strategy was then extended to 102 districts covering a population of 272.21 million over a period of three years starting from 1997. The tenth five-­ year plan mentioned about a joint programme review by the Government of India and the World Bank in February 2000 which showed that there was improvement in diagnosis, drug supply and proportion of patients cured in DOTS districts (Planning Commission 2002). By 2006, RNTCP achieved full nationwide covering over a billion population (1114 million), which was further expanded to 1247 million people in the first quarter of 2013 (Gupta 2014). However, some problems like poor quality of sputum examination, poor coverage, poor record-keeping, the lack of involvement of health care providers, poor coordination, use of non-standard treatment regimens and patient’s difficulties in compliance with DOTS regimen still exist. The Ministry of Health at the centre and at the state level and the implementers were supposed to look into these issues and suggest the ways to overcome them. However, without much discussion on these problems, it was planned that RNTCP would cover a population of over 800 million by 2004 and the entire country by the end of the tenth plan. During this plan, the focus has been on the following issues: (a) Involvement of medical colleges, tuberculosis hospitals, army hospitals, railways, corporate sector, NGOs and private practitioners in the programme (b) Involvement of PRIs to ensure the availability of requisite staff (c) Quality assurance of sputum microscopy and quality control of drugs (d) Provision of sufficient stock of drugs and consumables in the primary health centres/community health centres (e) Facilitation of referral activities (f) Information to the community of time schedule for availing treatment (g) Evaluation of RNTCP and operational research to improve performance

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(h) Research and development efforts to develop newer drugs to tackle drug resistance and testing of a new generation of tuberculosis vaccines India accounted for about 30% of the total tuberculosis cases in the world during the early twenty-first century. The National Health Policy, 2002, envisages a 50% reduction in mortality from tuberculosis. Keeping this in mind, the target for every year used to be set, and Table 5.1 shows impressive achievements by the Revised National Tuberculosis Control Programme under the 20-Point Programme from 1992–1993 to 2003–2004 in terms of case detection. In 1995–1996, more cases were detected than the target (109.4%). Again, there was a decline, and between 1998–1999 and in 2003, the achievement falls short of the target (Table 5.1). The earlier issues and challenges regarding poor feedback and follow-up of diagnosed patients during treatment and those who had completed treatment for possible recurrence or relapse; these now have been addressed in the recent RNTCP technical and operational guidelines. It was believed that if strictly followed, DOTS would reduce the burden of the disease in future and would also ensure better treatment for those infected. But reports from various regions, including Delhi, raise questions about the earlier beliefs about the proclamation of the effective control of tuberculosis by DOTS. Increase in the number of deaths and number of cases often got associated with better reporting system and effective disease surveillance system which is an important step towards effective control of TB. Such reports continued surfacing periodically, and experts realized that despite proper administration of DOTS, relapse cases started growing across different regions of India. Interestingly, after 2004, target-based detection and actual treatment data publication were discontinued. In one way, it is a positive sign, as tuberculosis control no more was seen a mere target achievement exercise. Under RNTCP, in 2005, 1.29 million; in 2006, 1.39 million; in 2007, 1.48 million patients; and in 2008, 1.51 million tuberculosis patients have been put on treatment (DGHS 2009). Annual report Table 5.1  Targets and achievements under the 20-Point Programme for TB case detection Year 1993–1994 1994–1995 1995–1996 1996–1997 1997–1998 1998–1999 1999–2000 2000–2001 2001–2002 2002–2003 2003–2004

Targets for cases detection (in lakh) 18 19 12.7 13.63 12.77 4.73 4.88 4.99 5.13 4.31 4.49

Source: Health Information of India (2004)

Achievement No. (in lakh) 13.59 12.59 13.89 14.54 13.09 3.22 3.72 3.56 4.02 4.48 4.58

Percentage 75.5 66.3 109.4 106.7 102.5 68.06 76.23 71.34 78.36 103.88 102

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of 2009 claimed that treatment success rates have tripled from 25% to 86% and death rates from tuberculosis got reduced from 29% to 4% in comparison with the pre-RNTCP era. The programme has consistently maintained the treatment success rate of about 85%. Status report of 2009 claimed that RNTCP is closed to the global target of case detection rate of 70%. The effort continued, and in 2009, 1.53 million TB patients; in 2010, 1.52 million tuberculosis patients; in 2011, 1.51 million; and in 2012, 1.46 million patients have been registered for treatment (Gupta 2014). Different status reports outlined the achievements of RNTCP. Quoting WHO 2008 Global Tuberculosis Report, the status report of 2009 claimed to have reduced mortality from 42 per lakh in 1990 to 28 per lakh in 2006 the year when RNTCP achieved nationwide coverage. RNTCP claimed to contribute in reduction of the prevalence of tuberculosis from 568 per 100,000 in 1990 to 299 in 2006, as per the same WHO report. All was seemingly going good. However, by the year 2013, the gap and lacuna in the system were clear to the professionals and reporting started coming. In one of the editorial, it was written: By the time patients are diagnosed with tuberculosis and started on anti-TB therapy in RNTCP, they have already infected many people in the community. This is because 80% of India’s healthcare is in the private sector, and most patients first go to private healthcare providers, including unqualified providers. This results in long diagnostic delays before correct diagnosis is made (Pai 2013).

One of the reasons for the situation was the fact that more than 80% of health care in India is catered by the private sector and individuals approaching the private sector as the first place of treatment become the victim of late diagnosis. The government also showed the eagerness of proactive engagement with private practitioners, the number of private organizations, NGOs and professional bodies such as Indian Medical Association, to enhance notification of TB cases (Purty 2018). Before analysing the role of institutions in details, it is worth mentioning that the interventions and combative efforts can be understood in two broad categories: diagnostics and therapeutics. These two are, though, not mutually exclusive categories. They are rather interrelated as the success of therapeutics depends on the effective and timely diagnostics.

Diagnostic Efforts Early detection of the disease remained the key to the success of this kind of combative measures, and this remained vital even after the invention of antibiotics. The problem lied in the detection of the disease as the normal symptoms of ‘Kshyarog’ was fever and Indian traditional practice used to keep patients on fast during fever. So, the prescribed treatment instead of being more nutritious used to become less notorious with more physical exercise. There was virtually no cure for the late detection of the disease. Before the invention of antibiotic, it depended more on the timely detection of the disease as noticed by almost all physicians including the

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practitioners of traditional medicines. In the year 1895, the invention of X-ray by Prof. Roentgen brought almost a revolution in the field of tuberculosis treatment. Early detection of tuberculosis was now possible with the help of X-ray. The discovery of X-ray by Prof. Roentgen in 1895 is said to facilitate the diagnosis of early cases with dry cough and no symptoms. The X-ray came to India as early as in the first decade of the twentieth century at a laboratory in Madras, now Chennai. It has been reported that later different tuberculosis hospitals started its use. The sputum test was known to the professionals in the country, and various laboratories used to perform the test, and in the later period, under the governmental intervention, it was done free of cost for the patients referred to by the qualified doctors. Ukil (1949) said that somewhere between 40% and 50% of about ten million active tuberculosis cases could be in the infective stage. Lack of facilities for X-ray and laboratory diagnosis remained partially responsible for non-detection of about 50% of the probable number of prevailing cases. The clinical examination along with skiagraphy of the affected part and finding of bacillus in the discharge remained reliable diagnostic methods till the 1950s. Under RNTCP, the diagnostic procedure was standardized: Diagnosis is primarily by sputum microscopy…For diagnosis, physicians are trained to ask all patients attending health care facilities if they have had a cough for three weeks or more. Those with a cough undergo three sputum-smear examinations over a two-day period. If two or three of the smears are positive for acid-fast bacilli, antituberculosis treatment is initiated. If all three smears are negative, one to two weeks of broad-spectrum antibiotics (e.g., trimethoprim–sulfamethoxazole) are prescribed. If only one of the three smears is positive or if symptoms persist after the administration of broad-spectrum antibiotics, a chest radiograph is obtained, usually at a larger health center, and the patient is evaluated (Khatri and Frieden 2002: 1420).

Diagnosis was linked with medication and a standardized dose and recording system was introduced which had a basis in suggested and adopted diagnosis. In 2013, while presenting an assessment of 50 years of tuberculosis intervention, it was pointed out that over the past year, laudable political and administrative commitment has been demonstrated by major increases in the RNTCP budget; a ban of inaccurate, antibody-based serological tests for the disease was done. On June 7, 2012, the Government of India through a Gazette Notification banned serological test for tuberculosis. However, the key question remains about the implementation of the notification and also the institutional capability to carry out implementation. A study by Kwan et al. (2018) on quality of tuberculosis care brought out different dimensions prevailing in Mumbai and Patna with regard to treatment method. What is important to note in the study (Kwan et al. 2018) is the ‘know-do gap’ scenario. Providers may know what to do, but the question remains what they are capable to do in actual practice. One of the key findings highlighted in the study was the lack of diagnostic skill and due to lack of diagnostic certainty quality of care remain poor. The most propagated, though, sputum microscopy came under criticism. The most controversial element of the DOTS model is reliance upon sputum microscopy, not culture, for diagnosis. The two major drawbacks of microscopy were identified as its insensitivity and inability to identify drug-resistant strains of tuberculosis.

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Microscopy in developing nations is typically performed on unconcentrated sputum using Ziehl-Neelsen staining. Unfortunately, this system only detects patients with very extensive, typically cavitary, lung disease (Iseman 2002). Meaning there is little chance of non-pulmonary tuberculosis being detected by sputum microscopy. To address the issue of MDR, under RNTCP, diagnosis of tuberculosis XE "Diagnostics" is done primarily using Smear Microscopy and by rapid molecular test (CBNAAT) in selected key population e.g. Pediatric, TBHIV and Extra-­ pulmonary Tuberculosis. RNTCP has three-tier laboratory networks for diagnosis of Tuberculosis including Drug Resistance Tuberculosis. An additional 500 CBNAAT machines were installed throughout the year, expanding the rapid molecular diagnostic facilities to 628 laboratories.

Medication The invention of streptomycin in 1944 gave a new hope to fight the tubercle bacillus with the stated objective of chemotherapy as ‘to destroy the parasites in the body of the host or at least so to injure them that they will prove vulnerable to the host’s own powers’ (Goldson, quoted in Rao 1949). The rich diet suddenly took back seat, and a combination of antibiotics and synthetic drugs become more important. The use of chemotherapy got to linked India’s prestige to the curative effort and said in the TB Worker’s conference that synthetic chemicals like sulphone and promizole, para-aminosalicylic acid and calciferol and antibiotic like streptomycin have been found to be useful for their suppressive action in one or the other type of tuberculosis (Ukil 1949). Streptomycin was most extensively being used against tuberculosis of all types from acute military one to tuberculosis of lungs. Dr. Bhaskar Patel (1949: 334) argued a kind of essentialism, when he wrote, the effect in the majority of cases is so astonishing that it is extremely difficult to withhold the temptation of the administration of this drug even as a trial in cases where it may not be indicated. Based on the treatment of several patients with several combinations of streptomycin (A.P; Perish Crush; Perish Crush and P.P.), Dr. Bhaskar argued that effects of streptomycin in conjunction with collapse therapy measures are immediate, lasting and more beneficial than when given alone. During 1949–1952, soon after their discovery, Para amino salicylic acid (PAS), streptomycin (SM) and isoniazid (INH) were introduced in India. The possible negative effect or say misuse of streptomycin was already been raised, little attention was paid to the negative aspect and use of streptomycin continued in a combination of new drugs till it became partially ineffective. There had been continued addition to streptomycin till 1966, when Rifampicin was added. Over the twenty years, different drugs were added to treat tuberculosis: streptomycin in 1944, PAS in 1946, thioacetazone in 1950, Isoniazid in 1952 and Rifampicin in 1966. The brief journey of medication can be presented as follow: (Table 5.2). The inclusion of pyrazinamide (PZA) resulted in a reduction in the duration required to achieve predictable cures. PZA was found to accelerate the time required

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Table 5.2  Landmarks in tuberculosis (TB) therapy Year 1944 1948 1952 1960s 1970s 1980s

Landmark SM and PAS Randomised trial, SM versus PAS versus SM/PAS Triple therapy, isoniazid/SM/PAS EMB replaces PAS RIF added to INH/EMB/SM PZA added to INH/RIF

Duration of treatment

24 months 18 months 9 months 6 months

Source: Iseman (2002) SM streptomycin, PAS para-amino salt of salicylic acid, RIF rifampicin, EMB ethambutol, INH isonicotinic acid hydrazide, PZA pyrazinamide

to achieve culture negativity and to yield 95% cure rates in 6 months when combined with INH and RIF. It also ensured that infected person after 2 months of the successful medication does not pose threat to infect other individuals. Recently, another new drug, bedaquiline, considered the most advanced anti-tubercular drug, was introduced for the treatment of MDR-TB. Pontali and et al. (2017) reviewed the success of this drug though a review on earlier studies and noted that out of 93 records published in 2016 that they retrieved suggests that bedaquiline is safe and effective against MDR tuberculosis. However, it is also clear that resistance to bedaquiline might occur. What is finally argued is that Bedaquiline is an interesting drug for the treatment of MDR- and XDR-TB, yet it can not be the single solution to all problems related to MDR-TB, as there are apprehensions that the great expectations on bedaquiline to improve MDR/XDR-TB patients’ outcomes might not be as effective when introduced at the programmatic level (Hoagland et al. 2016; Pontali et al. 2017).

BCG Vaccination The BCG vaccine was developed by French bacteriologists Albert Calmette and Camille Guérin and has been in use since 1921. Full form of BCG is Bacille Calmette Guerin vaccine. BCG vaccine has been important in the fight against tuberculosis. The BCG vaccine is a vaccine generally used to prevent tuberculosis. In countries where tuberculosis or leprosy is common, one dose of the BCG vaccine is recommended to newborn babies as soon as they are born. The BCG vaccine is a live attenuated vaccine designed to help people become immune. The vaccine was taken across the world with varying intensity. BCG campaign was inaugurated in East Punjab in March 1949 (Wig and Dongrey 1949). Dr. P. V. Benjamin was the tuberculosis advisor to the Government of India and a potent propagator of vaccination. Wig and Dongrey (1949) outlined in details the district wise initiation of vaccination programme in East Punjab. He presented statistics that claimed to have about 98% negative tuberculin among those vaccinated. Age-specific evidence also supported the claim. At the TB Workers Conference, another presentation was by

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Dr. J. Frimodt Moller, who was acting medical superintendent of UMT sanatorium. The BCG vaccination began at Madanapalle in August 1948 and the campaign is said to pass the first test. However, it was reported that about half of the population reacted to the tuberculin test and hence could not be vaccinated. In the south, the conversion rate remains low (69%), when compared to the Scandinavian case where it was 98% (Moller 1949). The reports about BCG vaccine were mixed and the less efficient outcomes were attributed to India specific peculiar factors (Patel 1949). The partial solution to the Indian situation was provided by alternative Mantoux and Moro-patch test before vaccination. International Tuberculosis Campaign (ITC) along with UNICEF and WHO in collaboration with the Government of India tried pushing mass vaccination campaign in India since 1948. Between 1947 and 1951, ITC tested more than 37 million children and adolescent for tuberculosis and vaccinated more than 16 million with BCG vaccine (Brimnes 2008). There was strong opposition to this specific campaign especially one Dr. Raman who started writing against BCG vaccination in a monthly health magazine ‘People’s Health’. The growing opposition became so loud that despite the push from international agencies and Indian Government then Madras administration did not show enthusiasm for vaccination and the programme that was to begin in 1949 could not go to the scale it was visualized (McMillen and Brimnes 2010). Dr. Raman while opposing BCG, in one of the issues of People’s Health Wrote, Much is talked about BCG vaccine and its effect. Some months back a foreign expert contacted us to do some publicity in favour of BCG vaccination. We had a straight talk with the expert. We put it to him plainly ‘of what earthly use is BCG in the present living condition of the Indian masses; every moment of their lives, they take a dose of infection; they continue to take in heroic doses of it day in and day out’. The expert confessed ‘unless the living conditions are improved, BCG can not be expected to yield the desired results’ (Raman quoted in McMillen and Brimnes 2010: 188)

The opposition by Dr. Raman died down; several other oppositions came up, some using Gandhi, BCG vaccination finally rolled out on a mass scale. What remained unaddressed is the improvement of the living conditions of the people who are vulnerable and are prone to the infection to bacillus. BCG vaccination has travelled across the world from Asia to Africa to Latin America with varying success and failures (Barreto et al. 2006; Brimnes 2008; Gheorghlu 1990; Neelakantan 2018). The protective efficacy of the first dose of BCG vaccine against miliary tuberculosis or tuberculous meningitis is remarkably important. Nevertheless, results regarding pulmonary tuberculosis have been inconsistent, either showing no efficacy or a protective efficacy rate around 80% (Barreto et  al. 2006). In 1979, preliminary results of the BCG trial started showing almost zero protection against infection. This unexpected finding evoked scientific discussion and National Tuberculosis Control Programme became without an effective vaccine to control the disease. It was only in 1986 when the government after sufficient academic investigators detected it in India, the BCG vaccination was revoked. Still, BCG vaccination continued in India as one decade later Murhekar et al. (1995) did a casecontrol study to assess the effectiveness of mass neonatal BCG Vaccination in Nagpur. Authors reported low protective effectiveness and concluded their study

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saying, the moderate effectiveness demonstrated in this study needs to be substantiated for other forms of tuberculosis by undertaking community-based case-control studies, before attempting to justify the use of mass neonatal BCG vaccination strategy as part of the national programme (Murhekar et  al. 1995). Another study in 2000, once again concluded the low protective effect of BCG vaccine against all forms of tuberculosis (Arbelaez et al. 2000). It is interesting to note here that despite successive reports concluding poor effectiveness of BGC vaccination for different types of tuberculosis and different sets of people, the vaccination continued in one or the other form. The conflicting professional opinion, confirming research outcome and misplaced political and institutional priority was at work and people were the only victim in both ways.

Preventive Efforts ‘Prevention is better than cure’ is famous saying invariable used across the world with a little in excess throughout India. Prevention against tuberculosis has to begin with the debate on ‘soil and seed’ metaphor. All successive reports have suggested that poor living and poor sanitary condition is responsible for the condition in which a person becomes patient. One of the important components that constitute prevention includes epidemiological condition and problem associated with it which might be responsible for higher incidence in certain ecologies. Ukil (1949) almost at the time of independence drew attention towards the conditions he considered epidemiological problems like lack of trained staff and laboratory facilities related to tuberculosis diagnosis. Ukil (1949) also talked about the linkage between bovine tuberculosis and its possible linkage with human cases. What is clear in his articulation is the unsaid emphasis on physical epidemiology and a kind of neglect to social epidemiology at the least. However, writings related to tuberculosis across the world consistently and unequivocally put emphasis on social epidemiology, which calling tuberculosis a disease of poverty. Dr. B. K. Sikand (1949) did argue while comparing western and Indian perspective that, tuberculosis is regarded as a social disease apart from being an infectious disease. Welfare nature of state along with improved living condition, housing conditions health education and health promotion was highlighted. In the scheme of the prevention of tuberculosis three things are to be considered: (1) to create a healthy environment whereby the chances of getting the disease are minimized, (2) to take care of those who are already diseased and are likely to infect others and to help them recover within shortest possible time, and (3) to restore and maintain the working capacity of the treated patients. The institutional role to contain tuberculosis did not remain limited to state but autonomous, voluntary, multilateral and international organizations joined the effort for combat tuberculosis in different parts of the world including India. Role of the institution especially outside the government sector was primarily to strengthen the public health aspect of disease combat and also contribute to medical aspects. Primarily in countries like India, institutions especially the autonomous and

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voluntary ones have contributed to health education and in presenting a public face of the state initiatives. At times, institutions have also acted to push a certain line of treatment, for example, Scandinavian push for BCG vaccination at the time of independence or WHO push for DOTs in the 1990s. The critics of each intervention are possible and should be desirable too to make the system more robust, it would be inappropriate to ignore their contribution in creating a ‘healthscape’. The reports when talked about prevention at best remained vague. One such example can be cited from the National Strategic Plan for Tuberculosis Elimination 2017–2025 while taking about prevention outlined the following (DGHS 2017b): • Scale up air-borne infection control measures at health care facilities • Treatment for latent TB infection in contacts of bacteriologically confirmed cases • Address social determinants of TB through the intersectoral approach The outlined priority with regard to prevention is more like containing the bacteria rather making the people better fed and immune to fight against bacteria or improving the quality of life and public health facilities.

Institutions and Associations Time and again, the governing authorities and the medical professionals of India came together to form associations. These associations along with governmental and non-governmental institutions attempted combating tuberculosis in India. The nature of the attempt can be broadly categorized into three types: preventive, research-oriented and curative. The Tuberculosis Foundation of India, established in 1939 is one such attempt. Further, during 1949–1952, Government of India established a tuberculosis chemotherapy centre which got renamed twice, first as Tuberculosis Research Centre, then as National Institute for Research in TB. National Tuberculosis Institute, Bangalore, is another institute that has contributed heavily to TB control. In the arena of research, three ventures deserve special mention; the National Sample Survey (1955–1958), which was organized by the Indian Council of Medical Research (ICMR). The epidemiological data it collected formed an important database for the National Tuberculosis Control Programme (NTCP). The other two ventures were the two internationally sponsored projects at Tuberculosis Research Centre (TRC) in Madras and at National Tuberculosis Institute (NTI) in Bangalore. They were established to train professionals and to undertake operational research (Amrith 2004). While conducting the fieldwork in Delhi, it was come to notice that DOTS administering staff were mostly non-medical professionals with just a few weeks’ training about doses of drugs to be given and lesser keeping. The institutions have their outlined objectives and some of the institutions have worked towards these objectives and attained some success. What we see, form the nature of institutions and their outlined objectives, is that while India has institutions which worked towards diagnostic and administering immunization as well as ensuring compliance through outreach, there is a noticeable lack of institution that

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could research towards a new line of drugs to control tuberculosis or carve out a new regimen which would be more effective against different forms of tuberculosis.

Tuberculosis Research Centre, Chennai Tuberculosis Research Centre (TRC) is another institute which was set up by the government in the first decade after independence itself. On the recommendation of the British Medical Research Council, an institute was set up in Madras in 1956 named as Tuberculosis Chemotherapy Centre to conduct research on different aspects of tuberculosis especially related to drugs and its effectiveness. On the fiftieth anniversary of the Tuberculosis Research Centre, Radhakrishna (2012) wrote an article highlighting the contribution of the centre. The centre later got renamed as the National Institute for Research in Tuberculosis (NIRT). The NIRT is a fine amalgam of two ICMR projects  – namely, the originally established Tuberculosis Chemotherapy Centre in 1956  in Madras City and the subsequently initiated Tuberculosis Prevention trial in 1966 in Chingleput district. In circumstances like urban poverty, this Madras project was initially a trial, an experiment to carry out the effectiveness of the anti-tuberculosis drugs. The primary objective of this institute to carry on susceptibility study especially among the untreated persons to taste the primary drug resistance (Katoch 2010). Apart from its proven contributions in the treatment of the disease through assessing drugs effectiveness at different sets of population, its record in epidemiology is equally noteworthy. TRC chose rural population for most of its epidemiological studies, while its counterpart institute, NTI focused on the urban population. One of the studies it conducted in Madras City compared the risk to close family contacts of patients treated at home with those treated in a sanatorium. In 1985, short-course regimens of chemotherapy were introduced in this area as an experiment, and the prevalence decreased from 688 to 510 per 100,000  in the next 15  years. The research continued, and when DOTS became part of RNTCP and was introduced as the second pilot in 1997, a model DOTS project was established in the centre’s project area and total population surveys undertaken at baseline (1999–2001) to estimate the outcome. In one of the foundation day publications, the institute claimed to have conducted about 50 randomized control trials (RCT) on different aspects of tuberculosis (TRC 2011). Other than conducting a research study, TRC was also responsible for conducting BCG trial. I have already discussed the issues related to BCG earlier in this chapter in detail.

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National Tuberculosis Institute Availability of effective anti-TB drugs meant less dependence on the hospitalization. With oral drugs available, which could be administered by individuals themselves, patients had the possibility of treating themselves at home. However, with this, the need to formulate and chalk down the process, the strategy of this possibility became ever so important. This led to the emergence of National Tuberculosis Institute under Directorate General of Health Services, Ministry of Health and Family Welfare, New Delhi. It was formally inaugurated on September 16, 1960, by the then prime minister of India Pandit Jawaharlal Nehru. The institute had a prime objective to contain tuberculosis throughout the country by formulating and evolving practicable, economically feasible and widely acceptable control programme. To achieve this prime goal, NTI was supposed to train a sizable number of medical and paramedical personnel so that the formulated plan and programme are efficiently implemented. Apart from these two major goals, NTI was also responsible to undertake the necessary research to give inputs to the above two objectives, as Doctor Katoch (2010) wrote that this institution along with Tuberculosis Research Centre (TRC), Chennai, has carried out drug susceptibility survey across India to determine the effectiveness of treatment. The institution continued to provide technical support for effective implementation of tuberculosis control activities at district, state, and national levels and monitor the programme. The Bangalore project gave a new perspective to the then existing tuberculosis situation of India. The institution contributed to diagnostic efforts and was made responsible for maintaining the quality of sputum microscopy through its mycobacteriology lab. It came up with a sociological understanding of the urban tuberculosis problem and of the potential social constrains in implementing mass chemotherapy. Though, the reach of the institution remained limited only to the surrounding regions of the Bangalore city and to the cites where it carried out research in alignment with ICMPR. The institution acts as a nodal agency to train those who would be implementing RNTCP. The standards for TB care in India has been published jointly by the RNTCP and World Health Organization in 2014; this lays down uniform standards for TB care for all stakeholders in the country. The major limitation of such countrywide guidelines is that it is based on grand generalization and follow the tradition of biomedical dominance disregarding local contexts and cultural and social ecologies in which different population lives in varying ecologies.

 uberculosis Association of India (TAI) T and International Collaborations Until 1944, if one got affected with TB, they were sent to isolated sanatoriums in hilly regions so that the affected individual would recuperate in a healthier environment, away from the crowd and not spread it further to a healthy individual.

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Tuberculosis Association of India (TAI) came into effect on February 23, 1939, with her excellency the Marchioness of Linlithgow being its first president. During the colonial period, King Emperor’s anti-tuberculosis fund and King George Thanksgiving (anti-tuberculosis) fund helped the association to bloom and grow, and finally, it was set up as a registered society. Ever since its inception, TAI has been wholeheartedly devoting its funds and machinery into combating and preventing the incidence and spread of the distemper in India. It is one of the oldest and largest voluntary organizations having its affiliates all over the country. The association works in unison with voluntary agencies and government bodies both local and global, providing the much-needed council, spreading awareness and educating the masses about the perils, problems, preventive care and possible treatment around the tuberculosis discourse. Its doctor, Ukil (1949), identified ‘health education of people’ as the first and greatest need in tuberculosis control. He further argued that voluntary organization would be crucial in this sector. The association dedicated itself to extension services and educating masses about the disease. As of today, TAI on its website (http://tbassnindia.org/) stated its aims and objectives: • Prevention, control, treatment and relief of tuberculosis • Encouragement of and assistance in the establishment throughout India of state associations having objectives similar in whole or in part to those of the association • Affiliation or control of and the rendering of assistance to any institution having objectives similar in whole or in part to the objects of the association • Undertaking of the research and investigation on subjects concerning tuberculosis and allied chest diseases • The doing of all such things as are incidental or conducive to the attainment of the above objectives In the pre-chemotherapy era, when no anti-tuberculosis drugs were available and the emphasis was laid on early diagnosis and prevention of the disease, TAI used to propagate available policies through workshops and conferences. Dr. B.K. Sikand, the first secretary of TAI, is accredited for the timely realization of the fact that the then-available traditional approach to treat patients in the sanatorium was beyond the means of India. Therefore, he advocated in favour of the scheme of domiciliary treatment (then known as the organized home treatment or OHT). This was adopted by the Government of India in the National Tuberculosis Control Programme in 1962 (Arora and Chopra 2014). As part of an agreement between Tuberculosis Association of India and the then Government of India, New Delhi TB Centre (NDTBC) was established as a model tuberculosis centre which continues to be a pioneer institute involved in research in the field of tuberculosis since its establishment in 1940. The TB Seals printed by the association has won ‘First Prize of TB Seal Designs’ by the International Union Against Tuberculosis and Lung Diseases, Paris, for the years 2006, 2007 and 2010, and in the year 1992 and 2005 won the ‘Second prize of TB Seal Designs’. Apart from specific institutions, multilateral international institutions like WHO, The Union against Tuberculosis and USAID have been actively working with Indian

Science or Sociology – Hope and Despair

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state to draw different strategies to contain tuberculosis and eliminate the distemper by set achievable deadlines. The National AIDS Control Programme and RNTCP have developed a ‘national framework of joint TB/HIV collaborative activities’. The nationwide coverage of services for PMDT, which began in 2007, has been achieved in March 2013. Central TB Division, in collaboration with National Informatics Centre, has developed a case-based web-based platform—’Nikshay’ in 2012, which has now been upscaled nationally. India has incorporated global strategy and joined hands with international agencies to eliminate tuberculosis threat. India like other countries has prepared national strategic plan 2017–2025 with specific objectives: • 80% reduction in TB incidence (i.e. reduction from 211 per lakh to 43 per lakh) • 90% reduction in TB mortality (i.e. reduction from 32 per lakh to 3 per lakh) • 0% patient having catastrophic expenditure due to TB

Science or Sociology – Hope and Despair The tussle between science and sociology has been a burning issue in understanding and containing tuberculosis in India both during the colonial period and post-­ independence. Often, the focus was more on science and technology while drawing a blind eye to the presence of poverty as a potent factor. Every attempt to look at the bigger social picture was only seen as a critic to the ‘genuine’ and concerned treatment process (Brimnes 2008, 2016a, b). Neelakantan (2018) quoted Brimnes (2016a, b)’s argument that history of tuberculosis exposes two incarnations of the state in India: One was colonial state which was largely non-interventionist; the post-colonial state – infused with nationalist rhetoric – was committed to national development based on science, technology and economic planning. Society at large placed their hope on science, so much so that BGP vaccines were aggressively pushed by the government in Madras even after the initial opposition in 1986, until it became clear that BGP vaccines were ineffective in the successful treatment of the distemper. Successive reports claimed success for the Revised National Tuberculosis Control Programme. National Strategic Plan for Tuberculosis Elimination 2017–2025 claimed that more than 90 million people have been tested, more than 19 million TB patients detected and treated, and millions of lives saved by the RNTCP’s efforts (DGHS 2017b). India claimed to achieve complete geographical coverage for diagnostic and treatment services for multidrug-resistant TB (MDR-TB) in 2013, with a remarkable 93,000 persons with MDR-TB diagnosed and put on treatment till 2015. Statistical reports on control and containment of tuberculosis in India have improved, though under reporting, it is still the largest issue. Incidence of tuberculosis, estimated in 2013, is to be 171 per lakh population; the number continues to fall. As per the joint Monitoring Mission 2015 reports, prevalence, currently estimated at 211 per lakh, and mortality, estimated at 19 per lakh, are both less than half the estimated number in 1990, thus meeting the ‘Stop TB Partnership targets for

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2015’. Over the last National Strategic Plan (NSP 2012–2017) period, significant gains in strengthening the support structures, program architecture and implementation environment for tuberculosis control are claimed (Purty 2018). This included mandatory notification of all tuberculosis cases (though about a million ‘missing’ cases every year remain a reality), integration of the program with the general health services, expansion of diagnostics services, programmatic management of drug-­ resistant TB (PMDT) service expansion, single-window service for TB-HIV cases, national drug resistance surveillance and revision of partnership guidelines. Over the past decade, about 80 million people have been tested, 15 million patients detected and treated, and millions of lives saved under new monitored treatment regimens, i.e. RNTCP. Therefore, it can be safely concluded that over the past decade, India has successfully reduced the incidence of TB; complete eradication is no more a distant dream. Given the country’s economic and sociologically standing, this medical success is worth every praise.

Conclusions Efforts to control tuberculosis in India in the post-independence period can be put in three specific categories: diagnostics, therapeutics and preventive. The state through different institutions including TRC, NTI, ICMR and other non-­ governmental associations and institutions put all its emphasis on diagnostic and therapeutic measures. Early detection was considered as key, and completion of DOT therapy was considered the only available treatment for the patients. Despite these efforts, the burden of tuberculosis in India is highest with about a quarter of global patients being Indian (John 2014). Infection amongst children is one of the factors, which at later stage emerges as adult infections. While India’s major emphasis remains on administering BCG, way back in 1979, doubts about the efficacy of the immunization came to light. India, however, continued with BCG vaccination, what John (2014) calls ‘cultivated conspiracy of silence’. Diagnostics and therapeutics are a contextual human phenomenon. It encompasses institutional and individual responses to the disease including available scientific knowledge, professional intervention, the role of the physician in the prescription making and adherence by patients at a particular place. The existing chemotherapy treatment for TB remains one of the most spectacular achievements of medicine as prior to 1944, effective treatment methods were surgically collapsing the lung and sanatoriums. Humanity during last 6–7 decades advanced to a very different treatment of drug regimens which was easy to use, had relatively low toxicity and was also effective. The contesting views regarding DOT, MDR, antibiotic resistance and cause of such resistance are well documented (Agarwal and Chauhan 2005; Cobelens et  al. 2012; Jindani et  al. 2004; John et  al. 2013, Roy 2014; Surendra and Alladi 2013). The continuing global burden of TB including drug resistance ought to bring focus on ethical questions about diagnosis and treatment. This global burden of TB is partly explained by the lack of industry motivation to develop new TB drugs and more

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nuanced diagnostics. Further, preventive measures regarding tuberculosis remained almost absent from the official TB control measures in India. However, important aspects like the choice of treatment, right of a patient to reject one particular treatment, the knowledge gap between the providers and the patients, knowledge gap between science and the society and ethics of the state in the adoption of exclusionary/inclusionary treatment trajectory remained to be investigated further.

References Agarwal, S. P., & Chauhan, L. S. (2005). Tuberculosis control in India. New Delhi: Elsevier. Amrith, S. (2004). In search of a magic bullet for tuberculosis: South India and beyond. Social History of Medicine, 17(1), 113–130. Arbelaez, M.  P., Nelson, K.  E., & Munoz, A. (2000). BCG vaccine effectiveness in preventing tuberculosis and its interaction with human immunodeficiency virus infection. International Journal of Epidemiology, 29, 1085–1091. Arora, V. K., & Chopra, K. K. (2014). Changing role of tuberculosis association of India in 75 years. The Indian Journal of Tuberculosis, 61(1), 1–4. Barreto, M. L., Pereira, S. M., & Ferreira, A. A. (2006). Tuberculosis, BCG vaccine, tuberculin skin test, protective efficacy. Jornal de Pediatria, 82(3 Suppl), S45–S54. Benjamin, P.  V. (1949). Anti-tuberculosis organization for India (pp.  21–29). Bombay: TB Worker’s Conference: The Proceedings. Brimnes, N. (2008). BCG vaccination and WHO’s global strategy of tuberculosis control, 1948–1983. Social Science and Medicine, 67, 863–873. Brimnes, N. (2016a). Languished hopes: Tuberculosis, the state, and international assistance in twentieth-century India. New Delhi: Orient Black Swan. Brimnes, N. (2016b). Viking against tuberculosis: The international tuberculosis campaign in India, 1948–1951. Bulletin of the History of Medicine, 81, 407–430. Central TB Division (2015) Report of the Joint TB Monitoring Mission, India https://tbcindia.gov. in/showfile.php?lid=3264 Cobelens, F., et al. (2012). Research on implementation of interventions in tuberculosis control in low- and middle-income countries: A systematic review. PLOS One Journal. https://doi. org/10.1371/journal.pmed.1001358. DGHS. (2009). TB India 2009 – RNTCP status report. New Delhi: Central TB Division, Directorate General of Health Services, Ministry of Health and Family Welfare. DGHS. (2017a). India TB report 2017  – RNTCP annual status report. New Delhi: Central TB Division, Directorate General of Health Services, Ministry of Health and Family Welfare. DGHS. (2017b). National strategic plan for tuberculosis elimination (pp. 2017–2025). New Delhi: Central TB Division, Directorate General of Health Services, Ministry of Health and Family Welfare. Frimodt-Moller, J. (1949). Second report on the tuberculosis survey at madanapalle (pp. 80–112). Bombay: TB Worker’s Conference: The Proceedings. Gheorghlu, M. (1990). BCG vaccine in tuberculosis control. Indian Journal of Pediatrics, 57, 651–655. Gupta, R.  S. (2014). Update on revised national tuberculosis control programme. The Indian Journal of Tuberculosis, 61(1), 30–34.

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Hoagland, D. T., Liu, J., Lee, R. B., & Lee, R. E. (2016). New agents for the treatment of drug-­ resistant Mycobacterium tuberculosis. Advanced Drug Delivery Reviews, 102, 55–72. Iseman, M.  D. (2002). Tuberculosis therapy: past, present and future. European Respiratory Journal, 20(Suppl. 36), 87 s–94 s. Jindani, et al. (2004). Controlled clinical trial in TB: A guide for multicentre trials in high-burden countries. Paris: International Union Against Tuberculosis and Lung Diseases. John, T.  J. (2014). Tuberculosis control in India: Why are we failing? Indian Pediatrics, 51, 523–527. John, T. J., Vashishtha, V. M., & John, S. M. (2013). 50 Years of tuberculosis control in India: Progress, pitfalls and the way forward. Indian Paediatrics, 50, 93–98. Katoch, V.  M. (2010). Managing drug-resistant tuberculosis: experiences from India. Expert Review of Anti-Infective Therapy, 8(5), 493–496. https://doi.org/10.1586/eri.10.33. Khatri, G. R., & Frieden, T. R. (2002). Controlling tuberculosis in India. The New England Journal of Medicine, 347(18), 1420–1425. Kwan, A., Benjamin, D., Saria, V., et al. (2018). Variation in the quality of tuberculosis care in urban India: A cross-sectional, Standardized Patient Study in two cities. PLoS Medicine, 15(9), e1002653. https://doi.org/10.1371/journal.pmed.1002653. McMillen, C.  W., & Brimnes, N. (2010). Medical modernization and medical nationalism: Resistance to mass tuberculosis vaccination in postcolonial India, 1948–1955. Comparative Studies in Society and History, 52(1), 182–209. Murhekar, M. V., Kulkarni, H. R., Zodpey, S. P., & Dehankar, A. G. (1995). Effectiveness of mass neonatal BCG vaccination in the prevention of pulmonary tuberculosis: A case-control study in Nagpur, India. Tubercle and Lung Disease, 76, 545–549. Neelakantan, V. (2018). Tuberculosis control in postcolonial South India and Southeast Asia: Fractured sovereignties in international health, 1948–1960. Wellcome Open Research, 2, 4. https://doi.org/10.12688/wellcomeopenres.10544.2. Pai, M. (2013). Tuberculosis control in India: Time to think beyond DOTS. Journal of Mahatma Gandhi Institute of Medical Science, 18(2), 94–96. Patel, B. (1949). A review of the BCG vaccination work in India. TB Worker’s Conference: The Proceedings, Bombay, pp. 47–72. Planning Commission. (1997). Ninth five year plan (1997–2002), Government of India. Planning Commission. (2002). Tenth five year plan (2002–2007), Government of India. Pontali, E., D’Ambrosio, L., Centis, R., et al. (2017). Multidrug-resistant tuberculosis and beyond: An updated analysis of the current evidence on bedaquiline. European Respiratory Journal, 49, 1700146. https://doi.org/10.1183/13993003.00146-­2017. Purty, A.  J. (2018). Detect–treat–prevent–build: Strategy for TB elimination in India by 2025. Indian Journal of Community Medicine, 43(1), 1–4. Radhakrishna, S. (2012). Contributions of the tuberculosis research centre Chennai in the field of epidemiology of tuberculosis (a review over 50  years). The Indian Journal of Tuberculosis, 59(1), 68–77. Rao, V. (1949). Streptomycin. TB Worker’s Conference: The Proceedings, Bombay, pp. 341–351. Roy, A. (2014). Effect of BCG vaccination against Mycobacterium tuberculosis infection in children: systematic review and meta-analysis. BMJ, 2014, 349. https://doi.org/10.1136/bmj.g4643. Sikand, B. K. (1949). Some modern trends in tuberculosis control in Western countries and their applicability to present Indian condition (pp. 30–45). Bombay: TB Worker’s Conference: The Proceedings. Surendra, K. S., & Alladi, M. (2013). Tuberculosis: From an incurable scourge to a curable disease - journey over a millennium. The Indian Journal of Medical Research, 137, 455–493.

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TRC. (2011). Dedicated to tuberculosis research 1956–2010. http://www.nirt.res.in/pdf/AR/ Dedicated%20to%20Tuberculosis%20Research.pdf Ukil, A.  C. (1949). Some aspects of tuberculosis control in India (pp.  10–20). Bombay: TB Worker’s Conference: The Proceedings. WHO (2007). Tuberculosis Fact Sheet. http://ww.who.int/mediacentre/factsheet/fs104/eng Wig, K. L., & Dongrey, L. R. (1949). The BCG campaign in East Punjab (pp. 73–80). Bombay: TB Worker’s Conference: The Proceedings.

Chapter 6

Patients, Professionals and Narratives

To combat tuberculosis, multiple interventions and initiatives have been reported and discussed over time. Interestingly, the majority of these initiatives are driven by the objective to achieve a higher cure rate. Providing relief to the people, who are suffering from the disease, remains at best a tangential outcome and is based on the belief that eliminating the bacillus is the most appropriate relief that the patients are seeking for. The other dominant consideration within the international order was to ensure better case-detection rate and find short-term and cost-effective treatment. The WHO tuberculosis expert suggested, ‘the technology for controlling tuberculosis had been standardised and simplified to such an extent that the problem lay merely in setting up an effective…sales organization with standardised consumer goods’ (Mahler 1969). However, the society is yet to be standardized. Society is layered, and multiple intersectionalities exist, which makes it difficult to formulate any standardized or uniform understanding about their behaviour specifically treatment behaviour. The present chapter deals with the treatment-seeking behaviour of the people suffering from tuberculosis. It also analyses the different narratives that they present and the changing scenarios they face owing to tubercle infection.

Healing the Sufferer Notions of healing ought to be central to any system of medicine. Rich arrays of healing practices are documented in different parts of the world with their relative successes. All the systems of healing share some theory of affiliation, defined roles for patients and healer, a circumscribed place and time for healing rituals, specific symbolic actions with healing efficacy and consequent expectations for recovery (Kirmayer 2004). A general model of healing includes both the physiological processes central to biomedical theory and practice and the symbolic aspects of healing that have physiological, psychological and social effects. India had several systems of healing before the introduction of western medicine, and they still continue to © Springer Nature Switzerland AG 2021 B. K. Choudhary, Ecology of Tuberculosis in India, Global Perspectives on Health Geography, https://doi.org/10.1007/978-3-030-64034-7_6

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exist in different parts of the country.1 Tuberculosis patients have been treated under different healing practices during the last century. Two broad systems of healing can be identified, namely, internalizing and externalizing.2 The first one tries to locate the causes, mechanism and solutions within the body of the individual even if the process is psychological or metaphysical and therefore is called internalizing. The argument under this philosophy is like something bad has gone inside the body and is to be destroyed or removed or something is blocked inside the body and must be unblocked to have the natural flow (of blood, wind, energy). The second one, externalizing healing practices, on the contrary, locates the origins and resolution of affliction in the process outside the body of the individual, and these are often interpersonal, social or spiritual. This includes the rituals that the patient’s family practices or the social conditions in which the individual lives in the society or the economic and the environmental conditions that shape the life of the individual. The current treatment process of a tuberculosis patient, if placed in the above binary, is primarily based on internalizing. The cause is identified as bacillus, and the cure is to make the body bacillus-free. This understanding draws the strength predominantly from the ‘pathogen theory’, which has ruled the biomedical traditions for decades. However, the reality is that human beings are not machines and are not completely kept out of their social and cultural milieu. Individual acts on the basis of his or her own understanding of the situation, the notion of the disease and severity of the symptoms apart from the financial constraints which set the limit.

Reaching Out for Help A person suffering from any symptom or ailment tries to reach out for help, which depends on multiple factors including the capability to pay and their knowledge and awareness about the severity of the ailment and its known symptoms. It also depends on the availability of the healthcare facilities and the trust and faith an individual can have in the available facility. These conditions also construct the notion of constraints in the minds of those who seek treatment to be the cure. Some of these constraints can be highlighted as, required fees, distance to the healthcare facilities, inconvenience due to hours of operation, perceived cost and opportunity cost and 1  Ayurveda that is based on the imbalances of elements or humours (dosas) is one such practice that treats the patients with diet, purification or medicine or a combination of these. Another prevalent system of healing is Unani medicine, which is based on the imbalance in humours of life forces and treats the imbalances with herbal or mineral medicines. Walker (1954) “The Story of Medicine”, OUP, Oxford; C. Leslie and A. Young (1992) “Pathways to Asian Medical Knowledge”, University of California Press, Berkeley; A.L.  Basham (1998) “The Practice of Medicine in Ancient and Medieval India”, in C.  Leslie (ed.) “Asian Medical Systems: A Comparative Study”, Motilal Banarsidas Publishers, New Delhi, pp.18–43. 2  Similar arguments have been given by A. Young (1976) “Internalising and Externalising Medical Belief Systems: An Ethiopian Example”, Social Science and Medicine, Vol. 10, pp. 147–156.

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lack of awareness among the people about the need of the services. The socially and economically disadvantageous sections of the society are at the margins in securing healthcare facilities. Traditionally, it was believed that treatment-seeking behaviour of a person depends on the availability and accessibility of the healthcare facilities, but now, this conception is under question especially when one studies a disease like tuberculosis. When physical access to the healthcare delivery system has been made available, at least for the people of the urban areas, one needs to look at other factors that restrict the people from utilizing these facilities. The NFHS-2 data show that during 1998, about 17% of the patients did not take any treatment. The situation improved over the next two decades, and during 2015–2016, about 4% of those who reported suffering from tuberculosis did not seek any help. This situation exists despite the fact that by 2006, all districts have been covered under RNTCP-DOTS and free treatment facility is claimed to be available to the tuberculosis patient. The reason for not seeking help is different for each individual across India. Since there is not sufficient information in the available secondary data sources, NHFS and NSS, this issue is dealt later in this chapter on the basis of the primary survey of tuberculosis patients from six hospitals in Delhi. In this section, effort has been made to analyse the treatment-seeking behaviour of tuberculosis patients in different parts of the country. The SLI computed from the NFHS data has been used to analyse the behaviour of patients belonging to different economic strata for the year 1998–1999, while the Wealth Index is used for 2015–2016. During NFHS, there is no information on the type of facility—public or private—used by the patient; hence, this analysis is done only for the period 2015–2016. It has been established that a correlation exists between the behaviour of the patients and their economic status in different ecological regions. It shows that in India, during 1998–1999 out of the total patients, who did not get any treatment, 54% belong to the lower SLI group. This high percentage can be attributed to a lack of awareness and poor financial conditions. In spite of free treatment, intake of a good amount of calories is essentially required for effective results. The percentage of the people who did not take any treatment is low for people with high SLI (8%). For people who seek treatment, the maximum percentage is in the medium SLI group (49%) followed by the low SLI group. This analysis has also been done for all the 13 ecological regions. However, only two SLI groups, viz. ‘low’ and ‘medium along with high’, have been taken into account because of lower numbers in each of the categories, especially in high SLI group. A pronounced regional variation is noticed among the patients who did not receive treatment. In the Lower Ganga Plain, those not seeking treatment are from the low SLI group. This is followed by East Plateau and Hills where 91% of patients not seeking treatment belong to the low SLI group. In the Gujarat Plains, the percentage is high (85%) in the low SLI category. Middle Ganga Plain (78), Southern Plateau and Hills (62) and West Himalayas (60) are other ecological regions where the percentages are much above the national average of 54. Interestingly, in the Western Plateau and Hills (85), West Coastal Plain (75) and East Coastal Plain (50), a higher percentage is recorded for patients who did not get any treatment for the disease who are from the high SLI group (Table 6.1).

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Table 6.1  Percentage of patients across various SLI group who received treatment (1998–1999) India/ region India

West Himalayas East Himalayas Lower Ganga Plain Middle Ganga Plain Upper Ganga Plain Eastern Plateau and Hills Central Plateau and Hills Western Plateau and Hills Southern Plateau and Hills Eastern Coastal Plain Western Coastal Plain Gujarat Plains Western Dry Region

Category Total Low Medium High Low Medium and high Low Medium and high Low Medium and high Low Medium and high Low Medium and high Low Medium and high Low Medium and high Low Medium and high Low Medium and high Low Medium and high Low Medium and high Low Medium and high Low Medium and high

No 17 54 38 8 60 40 54 46 100 0 78 22 56 44 91 9 53 47 15 85 62 38 50 50 25 75 85 15 40 60

Yes 83 39 49 13 16 84 37 63 82 18 58 42 24 76 58 42 53 47 30 70 53 47 68.5 31.5 44 56 51 49 27 73

Source: Computed from the NFHS (2) data

There is a regional variation among the patients who received treatment. The percentage is more for the medium and high SLI group (62%) for all India. A similar pattern is seen in the West Himalayas (84%), Upper Ganga Plain (76), West Dry Region (73) and Western Plateau and Hills (70) regions. Other areas with high percentages in the low SLI group are East Coastal Plain (68.5), Middle Ganga Plain (58), Eastern Plateau and Hills (58), Central Plateau and Hills (53) and Southern Plateau and Hills (53). The Lower Ganga Plain region shows a distinct picture, and all patients who did not seek treatment are from the low-income group, while the majority of the patients who received treatment belong to the low SLI group. This denotes that whether the patients are seeking treatment or not, they invariably belong to the lower SLI group in this region (Table 6.2).

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Table 6.2  Percentage of patients who received treatment for tuberculosis across states (2015–2016) India/states India Andhra Pradesh Arunachal Pradesh Assam Bihar Chhattisgarh Goa Gujarat Haryana Himachal Pradesh Jammu and Kashmir Jharkhand Karnataka Kerala Madhya Pradesh Maharashtra

No 3.50 6.06 5.88 6.01 3.68 6.49 0.00 4.93 1.83 0.00 0.63 4.94 4.50 1.80 3.57 1.53

Yes 96.50 93.94 94.12 93.99 96.32 93.51 100.00 95.07 98.17 100.00 99.37 95.06 95.50 98.20 96.43 98.47

Manipur Manipur Meghalaya Mizoram Nagaland Delhi Odisha Punjab Rajasthan Sikkim Tamil Nadu Tripura Uttar Pradesh Uttarakhand West Bengal Telangana

No 0.50 1.42 7.30 3.57 5.26 4.35 0.93 2.81 0.00 3.23 8.70 2.71 5.41 2.45 4.00

Yes 99.50 98.58 92.70 96.43 94.74 95.65 99.07 97.19 100.00 96.77 91.30 97.29 94.59 97.55 96.00

Source: Calculated from NFHS (4) data

Data for the year 2015–2016 suggest that more than 95% of patients have received some kind of treatment for tuberculosis. It is about 13 points higher compared to NHFS 2 in the year 1998–1999. Goa, Himachal Pradesh and Sikkim have reported having 100% of patients reaching out for some kind of help, while Manipur with 99.5% is almost there. Interestingly, Delhi is reported to have about 5% patient not seeking treatment though suffering from tuberculosis. There could be two possibilities: first, they are new migrants and have yet not registered with the treatment centre, or they have been turned back due to the lack of verifiable address. It is reported widely that the patients who do not have verifiable address are not registered with the DOTS centre, in fear of having these patients dropping out of treatment and consequently affecting the ‘cure rate’. As NFHS is a household-based survey, the date is relatively more reliable than that of official data on treatment. Tripura with 8% of patients reporting not taking any treatment is the worst state followed by Mizoram where about 7% of patients are not seeking any treatment. Chhattisgarh and Andhra Pradesh with about 6% of patients not seeking treatment are showing worse off behaviour compared to the national average. Bihar is a curious case, which is reporting better treatment-seeking behaviour (only 3.68% of patients not seeking treatment) compared to otherwise ‘developed’ states like Gujarat (4.93), Delhi (5.26), Telangana (4.00) and Andhra Pradesh (6.05). When compared across ecological regions, it is noticed that Eastern Plateau and Hills have reported the worst treatment-seeking behaviour where more than 5% of patients have reported not taking any treatment for tuberculosis (Table 6.4). The region comprises states of Orissa, Andhra Pradesh and part of Chhattisgarh and Jharkhand. All of these states have a sizable proportion of the tribal population.

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Table 6.3  Treatment-seeking behaviour by wealth index across the ecological region (2015–2016) India/ecological region India

West Himalaya East Himalaya Lower Ganga Plain Middle Ganga plain Upper Ganga plain East Plateau and Hills Central Plateau and Hills West Plateau and Hills Southern Plateau and Hills East Coastal plain West Coastal plain Gujarat West Dry

Wealth index Total Low Medium High Low Medium and high Low Medium and high Low Medium and high Low Medium and high Low Medium and high Low Medium and high Low Medium and high Low Medium and high Low Medium and high Low Medium and high Low Medium and high Low Medium and high Low Medium and high

No (%) 3.50 4.56 2.21 1.84 75.00 25.00 83.13 16.87 75.00 25.00 81.82 18.18 41.18 58.82 97.67 2.33 86.36 13.64 75.00 25.00 57.89 42.11 45.00 55.00 50.00 50.00 80.00 20.00 81.82 18.18

Yes (%) 96.50 95.44 97.79 98.16 35.89 64.11 52.98 47.02 69.29 30.71 80.51 19.49 39.62 60.38 83.74 16.26 70.71 29.29 53.29 46.71 42.28 57.72 49.78 50.22 20.45 79.55 44.56 55.44 59.87 40.13

Source: Calculated from NFHS (4) data

Table 6.3 shows that about 97% of those who are not seeking treatment are poor, which in comparison to any other region is the worst. Invariably, across ecological regions, it is the poor (approximately 75%) who are not taking any treatment in regions like West Himalaya, East Himalaya, Lower Ganga Plain, Middle Ganga Plain, Central and Western Plateau and Hills, Western dry region and Gujarat. Gujarat is another region where about 5% of those who reported to be suffering from tuberculosis are not taking any treatment. It consists not only some of the most developed districts of India but also some of the poorest district of India like The Dang. It is clear that the poor are not seeking treatment across the country. While at the national level, about 4.5% of the poor are not taking treatment compared to 1.8% of the rich who are not taking any treatment. Data across ecological region

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suggests that almost every region reported a secular trend with more than 75% belonging to poor wealth index those who are not seeking treatment except in Upper Ganga Plain. Upper Ganga plain comprises parts of Uttar Pradesh and Haryana, and this region shows thar only about 60% belong to poor category, thereby meaning about 40% of those who are not seeking treatment belong to medium and high wealth index category. West Coast Plain is another region where those who are not seeking treatment are uniformly distributed across wealth index, 50% of nontreatment seekers are poor, while 50% belong to medium and high wealth index category. East Cost Plain presents a different picture, as about 55% of those who are not taking any treatment for tuberculosis belong to the non-poor category. The region comprises the state of Orissa, Andhra Pradesh and Tamil Nadu. The reason for this typical characteristic, where non-poor outnumbers poor in not taking treatment, is difficult to explain, especially when these regions have better healthcare facility and access. Andhra Pradesh seems to influence this particular behaviour as general well-­ being in the state, and about 6% of patients reported not taking any treatment, which is highest for the region.

Treatment-Seeking Behaviour It is noted that individuals with symptoms seek help and access to healers of multiple types, which includes from quacks to super-speciality hospitals depending upon the knowledge and capability to pay. Persons visiting facilities before being diagnosed also affect the stage of detection of disease, and in the case of tuberculosis, this becomes crucial as early detection remains key to successful treatment. Also, the person will have less chance to infect others if he or she is a known patient. There are multiple factors that affect treatment-seeking behaviour of patients which create a different pattern. Table 6.4 presents the nature of institution accessed by persons suffering from tuberculosis in different parts of the county. The table indicates that poverty draws patients to private healers. A higher proportion of patients (50%) in the Middle Ganga Plain are accessing private healthcare institution compared to other regions. It also indicates that a lower level of awareness about RNTCP-DOTS is responsible for people accessing private healthcare facilities. It is clearly visible that poor across regions are not availing any treatment. In Western Himalayan region, about 50% of patient from rich wealth index go to private health sector, while only 16% of poor patients access private healthcare sector (Table  6.5). Eastern Himalayan region present a different picture. Here, across wealth categories, a larger proportion are accessing private healthcare sector, which actually means dominance of private health sector or poor faith in public healthcare sector. Another region is East Coast plain, where larger proportion of rich goes to private healthcare sector compared to others. There are multiple factors which determine the individual’s choice to access healthcare facility. Table 6.6 presents the result of logistic regression for rural areas

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Table 6.4  Treatment-seeking behaviour wealth index across the ecological region (2015–2016) Ecological regions West Himalaya East Himalaya Lower Ganga Plain Middle Ganga plain Upper Ganga plain East Plateau and Hills Central Plateau and Hills West Plateau and Hills Southern Plateau and Hills East Coastal plain West Coastal plain Gujarat West Dry

No treatment 1.37 3.84 3.05 3.48 1.97 5.26 4.79 1.37 3.67 4.17 1.91 4.93 3.33

Public 76.63 64.08 65.65 39.57 47.05 61.49 53.38 60.41 62.93 63.75 68.15 67.49 51.52

Private 12.71 22.52 27.48 50.95 39.65 24.33 36.82 33.79 26.45 26.46 23.89 21.67 35.45

Both (private and public) 9.28 9.57 3.82 6.01 11.33 8.92 5.01 4.44 6.95 5.63 6.05 5.91 9.7

Source: NFHS 4

of the country with various characteristic features that have been included in the analysis. For the years 1998–1999, in the rural areas, the significant determinants in utilizing healthcare are SLI, religion, caste and education. People from high SLI group are more likely to seek treatment than others across regions. Similarly, those belonging to upper caste are more likely to go for treatment compared to people belonging to scheduled castes, scheduled tribes, and other backward castes. Patients belonging to scheduled castes are least likely to go for treatment. Education was found to be significant in determining the treatment-seeking behaviour, and the probability of utilizing treatment facilities is better among the literate population (Table 6.6). Table 6.7 presents the result of logistic regression for the country with various characteristic features that have been included in the analysis to analyse the treatment-­seeking behaviour of those suffering from tuberculosis. For the years 2015–2016, the significant determinants in utilizing healthcare are wealth index, caste and education. People from high wealth index are more likely to seek treatment than others across regions (Tables 6.5 and 6.7). It is clear from the regression analysis that the rich have a higher possibility to access healthcare facility compared to the poor if suffering from tuberculosis. Scheduled tribe has a lower probability to access treatment compared to other backward castes, while the non-reserved caste has a higher probability to seek treatment if suffering from tuberculosis. Awareness about symptoms of a particular kind is considered an important factor in seeking treatment for a particular disease, because it is the symptom that drives a person to seek medical help. Banerji and Anderson (1963) in their study of Tumkur district found that approximately 70% of sputum positive persons with tuberculosis were aware of the symptoms of tuberculosis. It can be noted here that compared with other districts in India, Tumkur District, however, is quite favourably placed with regard to medical and public health facilities. The study of Delhi shows that people are less aware of the symptoms of tuberculosis even when they are suffering and getting treated at DOTS centres.

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Table 6.5  Treatment-seeking behaviour by wealth index across ecological regions (2015–2016) Ecological regions West Himalaya

East Himalaya

Lower Ganga Plain

Middle Ganga plain

Upper Ganga plain

East Plateau and Hills

Central Plateau and Hills

West Plateau and Hills

East Coastal plain

West Coastal plain

Gujarat

West Dry

Southern Plateau and Hills

Wealth index Poor Middle Rich Poor Middle Rich Poor Middle Rich Poor Middle Rich Poor Middle Rich Poor Middle Rich Poor Middle Rich Poor Middle Rich Poor Middle Rich Poor Middle Rich Poor Middle Rich Poor Middle Rich Poor Middle Rich

Source: Calculated from NFHS-4

No 3.78 5.11 3.81 3.53 2.97 3.59 8.51 3.7 0 3.3 4.35 0 4.55 0 1.74 1.91 1.67 0.00 4.5 1.59 1.49 4.95 2.63 2.78 5.79 0.00 4.55 2.04 3.61 1.12 2.83 1.12 0.00 5.89 1.72 1.06 6.08 0.00 1.69

Public 73.11 64.23 41.9 39.83 36.14 41.32 69.15 72.22 60 73.63 52.17 41.18 77.27 77.63 60.47 63.06 58.33 56.58 50.5 47.62 58.21 64.41 69.74 53.47 55.49 52.31 43.94 40.23 54.82 50 76.42 84.27 69.79 65.24 64.56 60.64 62.23 63.24 50.85

Private 16.39 25.55 50.48 50.03 56.93 52.1 15.96 20.37 32.73 19.78 34.78 58.82 15.15 18.42 29.65 30.57 35.00 39.47 34.5 39.68 34.33 21.62 22.37 38.19 33.23 43.08 48.48 44.61 30.72 39.04 8.49 11.24 18.75 20.15 23.95 26.81 22.58 30.88 37.29

Both 6.72 5.11 3.81 6.61 3.96 2.99 6.38 3.7 7.27 3.3 8.7 0 3.03 3.95 8.14 4.46 5.00 3.95 10.5 11.11 5.97 9.01 5.26 5.56 5.49 4.62 3.03 13.12 10.84 9.83 12.26 3.37 11.46 8.71 9.77 11.49 9.12 5.88 10.17

122 Table 6.6  Determinant of treatment seeking for tuberculosis in India (1998–1999)

6  Patients, Professionals and Narratives Background characteristics Odd ratio Age Working Child 0.961 Old 1.044 Sex Male Female 0.903 Education Illiterate Literate 1.908a Religion Hindu Muslims 0.230a Christians 1.540 Others 0.216a Caste OBC Upper caste 0.761 SC 0.032a ST 0.273b SLI Medium Low 0.253b High 1.658 Behaviour Not smoking Smoking 0.320

Number of cases 828 123 493 725 719 813 631 1069 119 154 102 437 371 271 365 673 655 166 1247 185

Source: Computed from the NFHS (2) data Notes: RC, reference categories, number of cases; pseudo R square = 26 a significant at 5%; bsignificant at 1%

Patient’s Profile About 240 patients were interview in different hospitals falling in different regions of Delhi. Out of the total patients, 67% are male, while 37% are female. About 89% of patients are from the age group of 15–49 years. The rest of the 11% of patients are above the age of 50 years. About 60% of patients have reported having a large family size, i.e. more than five members in the family, and about 58% of the patients have more than two dependents. The sample comprises more male patients from the south region and from the charity hospital compared to other regions. The proportion of female patients is more in the west, north and central regions. The proportion of patients in the working-age group is almost the same in all the regions. (Table 6.8).

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Table 6.7  Determinant of treatment seeking for tuberculosis in India (2015–2016)

Background characteristics Age Working (RC) Child Education Illiterate (RC) Literate Religion Hindu (RC) Muslims Christians Others Caste (RC) OBC Upper Caste SC ST Wealth Index Poorest (RC) Poorer Middle Richer Richest

Unadjusted odd ratio

3.28(0.45–23.85)

2.03(1.61–2.56)b

1.41(0.80–1.62) 1.00(0.72–1.38) 1.07(0.64–1.80)

1.08(0.74–1.57) 1.00(0.71–1.39) 0.64(0.49–0.85)b

1.79(1.35–2.37)b 2.61(1.83–3.72)b 3.47(2.19–5.48)b 2.75(1.64–4.62)b

Source: Estimated from the NFHS (4) data a significant at 5%; bsignificant at 1%; RC, reference categories

Table 6.8  Distribution of the patients in different regions/hospitals of Delhi Regions/variables Sex Age group

Religion Migration

Source: Field survey

Categories Male Female Child Working Old Hindu Others Non-migrants New migrants Old migrants

North 12.3 24.4 18.2 17.2 11.5 18.9 8 16.5 24.3 14.2

Central 16.2 17.4 – 19.2 3.8 8.9 46 27.3 18.9 5.7

Charity 20.1 10.5 – 15.3 34.6 19.5 6 15.5 – 23.6

East 18.8 12.8 – 16.7 23.1 15.8 20 19.6 13.5 15.1

South 22.7 5.8 63.6 13.8 19.2 18.4 10 – 24.3 29.2

West 9.7 29.8 18.2 17.7 7.7 18.4 10 20.6 18.9 12.3

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The proportion of old patients (above 50 years) is low in the west and central regions. The largest proportion of children (60%) was found in the southern region, while in the central and eastern regions and the charity hospital, the sample does not have any children. Central region has a low proportion of Hindu patients when compared to other regions. It is noticed that a larger proportion of patients of other religion, which primarily include Muslims, are located in the central region of Delhi. The distribution of non-migrant patients is uniform across various regions except the south region, where no non-migrant patient is found because in Delhi, the non-migrants in the south region belong to higher economic strata. It was observed that the west region has the maximum number of female patients and the south region has the least number. Migration is an important factor in deciding the health of the population. Majority of migrants have come to Delhi in search of a job, and their economic condition is poor. Amrith (2004) has also identified the importance of migration on tuberculosis and stated, The close association of tuberculosis with migration, borders and question of national sovereignty has led to renewed calls for the exercise of the most ‘old fashioned’ manifestations of state power over individual health: coercion, the preventive detection of tuberculosis patients and tighter control over the movement across frontiers.

International migration is considered a key variable in ensuring treatment of a patient as well as in control strategy for the country receiving the migrant. The movement of people from the poorer region to a rich region may trigger the spread of the disease. The argument is generally given while reporting high mortality rate and higher morbidity from tuberculosis in advanced countries that otherwise have controlled infectious diseases. The distribution of patients according to their migrant status shows that about 46% of the patients are old migrants, i.e. living in Delhi for more than 5 years, while about 41% are non-migrants. Education is another important variable that affects the occurrence of the disease as well as the treatment-­ seeking behaviour of the individual. It is noticed that only 16% of the patients are illiterate, while about 75% of the patients have spent less than 10 years in the school. Thus, only 9% of the patients have spent more than 10 years in school. Majority of the patients have not reported poverty as the direct reason for their dropout from school. The reason for dropout, however, has an indirect link with poverty as the majority of them entered the job market at an early age after leaving school. Social status like caste and religion has been found important determinants in deciding the treatment-seeking behaviour. It is noticed that about 26% of the patients belong to the scheduled castes and scheduled tribes. About 43% of them have reported themselves as a member of other backward castes (OBCs). Interestingly, about 72% of the patients belong to low standard of living (SLI), and 23% are from medium SLI. Only 5% of the patient belongs to the high SLI category. It is important to keep in mind that in India, hospitals in the private sector are treating about 40%–50% of tuberculosis patients. The people from the high-income group generally utilize private healthcare facilities. About 60% of patients reported that their economic performance has deteriorated due to the illness.

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125

Disease History Vulnerability and susceptibility of the individual towards the disease can be ascertained if one analyses disease history of the individual and family members of the person infected. Two approaches are generally used to analyse the past health of the patients: longitudinal approach and retrospective approach. This study is based on the retrospective approach to collect information about their past health. Though, those studying the origins and development of the chronic disease usually argue that retrospective data are unreliable and subject to significant recall bias (Moss and Goldstien 1979). Longitudinal studies are supposed to eliminate most of these problems of recall bias and have been the preferred method. However, Blane (1996) argues that studies, which are based on longitudinal data, remain ‘blind to events in the earlier part of life or they have to use the retrospective methods to obtain this information’. Here, retrospective data are used to understand the pattern of development of disease in the patient. The result of the analysis of the disease history of a patient and the various kinds of treatment that they have taken are presented in Table 6.9. Among 229 patients, 122 retrospective cases of different diseases were reported. About 14% of patients have reported that they had suffered from long fever. The incidence of typhoid was reported by about 6% of the patients, while 3% of the patients reported regular appetite loss and about 2% of total respondents had suffered from jaundice. The kind of treatment that the patients were taking was also asked, and it was noted that only 14% of total cases went to government hospitals or to dispensaries for Table 6.9  Disease history of the patients Disease history Disease/treatment Number Percentagea Long fever 33 14.4 Appetite loss 7 3.1 Pox 2 0.9 Typhoid 13 5.7 Jaundice 4 1.7 Tuberculosis 36 15.7 Othersc 27 13.5 Any disease 122 53.3

Percentageb of patients under various treatment processes for reported disease(s) 1 2 3 4 5 6 12 54.5 33.3 85.7 14.3 50 50 38.5 53.8 7.7 100 50 8.3 41.7 13 3.2 74.2 6.5 7.4 34 41 1.6 14 1.6

Source: Field survey Notes: 1, Home treatment; 2, RMP, 3, private qualified doctor, 4, Vaidya/Hakim/indigenous system, 5, govt. hospital/dispensaries; 6, charitable hospital a To calculate the percentage, the total number of patients in the sample, i.e. 229, has been taken as denominator b To calculate the percentage of patients, who have undergone different kind of treatment, the reported number of patients suffering from a particular disease has been taken as a denominator c The major disease included in other categories are joint pain, 0. 9; sugar problem, 0.9; accident, 1.9; tumour, 0.9; and ear problem, 0.9

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treatment. About 34% of the total reported retrospective cases consulted registered medical practitioners (RMP), while about 41% of the patients went to private doctors for the treatment. Indigenous systems of medicine and charitable hospitals were not found popular among these patients, and only about 2% of them went to the healers practising indigenous medicine. In most of the cases, non-availability of charitable hospitals or good practitioners of indigenous medicine was reported as a reason for not consulting them. It is noticed that about 16% of the patients suffered from tuberculosis before the start of their treatment. This includes the patients of both kinds: those who have discontinued the medicine and those who have completed the prescribed course of chemotherapy. The reasons for discontinuation of medicine were many, migration being the prime factor. Moreover, after staying in the village for a long duration, their financial condition deteriorates, and they cannot afford to purchase the required dose of medicine. Only 50% of the patients reported to take treatment from government hospitals or dispensaries in their native place, while about 41% consulted RMP in their localities, and about 85 of them went to private doctors. History of the tuberculosis patients is closely related to the treatment-seeking behaviour of the patients. It is known that tuberculosis patients used to have symptoms that are common for other diseases, and this makes the detection of tuberculosis difficult at an early stage. Table 6.10 presents the history of tuberculosis in the patients. It is seen that about 64% of the patients knew about the disease since the last 3 months before the study. They were new to the DOTS treatment. The last two columns of the table are significant. They show the proportion of patients who have had tuberculosis from more than 1 year and from more than 5 years. About 3% of the patients reported suffering from the disease for more than 1 year, while about 1.7% of the patients were found suffering for more than 5 years. These are the cases with drug resistance at different levels. These include those who suffered from the resurgence of tuberculosis and who reported having completed the prescribed course of chemotherapy.3

Table 6.10  History of tuberculosis in the patients Less than Patients 1 month Number 49 Percentage 21.4

More than 1–3 months 3–6 months 6–12 months 1–2 years 5 years 97 63 12 4 4 42.4 27.5 5.2 1.7 1.7

Source: Field survey To calculate the percentage, the total number of patients in the sample, i.e. 229, has been taken as a denominator

3  The patient’s claim was verified from the health supervisor or DOTS provider of that hospital and was found true.

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127

Coping with the Symptoms The symptoms of the disease in a patient are related to the treatment-seeking behaviour of the patient. It has been noticed that those who have unusual symptoms like bleeding went to the DoT centre at an early stage compared to those who had fever or cough. Fever and cough are common illnesses and even exist in a person who does not suffer from tuberculosis. This is the reason people take it lightly and feel fit unless they start suffering from unusual symptoms like bleeding or chest pain. Table 6.11 provides the list of various symptoms found in the surveyed patients in the different parts of Delhi. It is noticed that about 78% of the patients reported having cough at different points of time, while about 75% of the patients reported suffering from fever. The common symptoms of tuberculosis are similar to the symptoms of normal seasonal illness like cough and cold. It is noticed that 8% of the patients reported having fever and 14% of patients reported having irregular cough for more than one year. The campaign against tuberculosis suggests that if a person is having cough for more than three weeks, he or she should immediately get checked for the probable infection, though the filed reports indicate otherwise. About 70% of patients felt weakness, and the majority of them reported being weak for less than a year. About 30% of patients have reported to appetite loss. About half of them reported that this symptom has occurred during 1–3  months preceding the survey. About 20% of the patients had tumours. These patients were suffering from extra-pulmonary tuberculosis. Chest pain and breathlessness can be categorized as symptoms of the severe stages of the disease. However, there were patients who had these symptoms for more than a year. These patients were undergoing treatment, and some of them were noted to be relapse cases. About 36% of the patients reported to have bleeding or a tint of blood in their sputum; 10% among them reported having had the symptom for more than a year. It is expected that the symptoms, which are uncommon in the general illness, would cause worry in the patients and also encourage them to consult the doctor. It was noticed that those Table 6.11  Symptoms of the disease among the tuberculosis patients

Symptoms Fever Cough Appeticte loss Bleeding Weakness Tumour Breathlessness Chest pain Pox

Period for which symptoms have been noticed (in percent) Less than More than 1 month 1–3 month 3–12 month 1 year Not sure 23.8 34.9 27.9 8.1 5.2 16.9 35.4 33.1 14.6 – 20.6 48.5 14.7 10.3 5.9 27.7 36.1 21.7 10.8 3.6 28.6 23.6 27.3 10.6 9.9 31.9 44.7 19.1 4.3 – 6 48 24 – 22 31.8 25.8 36.4 6.1 91.4 8.6 – – –

Source: Field survey

Total number 172 178 68 83 161 47 50 66 35

Percent 75.1 77.7 29.7 36.2 70.3 20.5 21.8 28.8 15.3

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patients who had bleeding as the first symptom went to the government hospital in the first instance and were referred to the tuberculosis ward of the hospital.4 However, about 10% of the patients reported that they had been suffering from bleeding for more than 1  year.5 These were the patients who were repeating the medicines. They spent a lesser amount of money on their treatment.

Coping with the Disease The study of the stress-outcome model has been a popular way of understanding of the health of a population (Mccoll et al. 1995). This tries to analyse the various factors like function of stress, personal factors, relationship with the providers and other social institutions and individuals, relationship between social support and coping. The reaction of the patient is important to study the level of mental stress and psychological well-being of the patient (File 1994; Liefooghe et al. 1995). Table 6.12 presents the reaction of patients towards tuberculosis and their categorization according to features like sex and education. It is noticed that about 65% of the patients were afraid of tuberculosis and about 68% of them were worried about their children. Forty-eight percent of patients reported tuberculosis as a taboo and restrained to tell others that they were suffering from the disease. Fear for Table 6.12  First reaction of the patients about suffering from tuberculosis Patients/ variables Total Sex Education

Age

Categories Number Percentagea Male Female Illiterate Up to matric Above matric Working Old

Worry about Would Afraid die Curable Detachment children 149 12 165 34 155 65.1 5.2 72.1 14.8 67.7 64 3 75 9 (26) 50 67 9.4 67 22 (74) 78 83 2.7 87 22 46 60 6.4 67 13 70

Cannot Taboo express 109 37 47.6 16.2 46 10 53 26 46 19 46 16

71

–

86

19

86

62

9

63 77

5.3 4.2

72 69

6 16

70 50

39 58

16 19

Source: Field survey To calculate the percentage for the total patients, the total number of patients in the sample, i.e. 229, has been taken as a denominator. Percentage for categorical variables—age, sex and education—has been calculated by taking the total number of patients in each category

a

 A patient reported during the fieldwork at Jahangirpuri Hospital.  This proportion is indicating the percentage out of the total patients who have reported bleeding as symptoms. A total of nine patients have reported bleeding for more than 1 year, which comes out as 3.9% of the total respondents. 4 5

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detachment from the family was not widely prevalent, and only about 15% of the patients reported that they have been deserted or are in the process of being left alone. The majority of them are women when sex is taken as a category, while old people showed more fear of detachment when age is taken as a categorical variable. This attracts the cultural practices of society that are harsher for a particular community or a particular section of people or a particular gender. This fear of detachment is one of the reasons for lower reported incidence rate among women. Women in Indian culture would prefer to die at their husband’s place without medicine than to be deserted. The country lacks institutional, social or personal security apart from the required respect for women and elderly.

Coping with Treatment Availability of the combative methods and availability of and accessibility to the healthcare facilities are the most important variables in deciding the treatment of a particular disease. This is not all that decides the individual’s choice or behaviour during the treatment. The patient’s behaviour towards treatment is determined primarily by an individual’s knowledge about the available healthcare facilities, the severity of the disease and affordability. The debate on the behavioural aspect of population and the limitations of the individuals to gain complete knowledge about the availability is known. It is evident from Table 6.13 that the patients have consulted various kinds of doctors at different stages of treatment. Four phases of treatment have been identified on the basis of the patient’s utilization and change of healing place. This table shows that about 17% of patients have gone up to the fourth phase of treatment,

Table 6.13  Kind of doctors/healers consulted by the patient during treatment Percentagea of patients visited different places Private qualified Indigenous Home treatment treatment RMP doctors 31.9 – 49.3 2.2 – 2.9 22 6.8

Place/ frequency of treatment First treatment Second treatment Third treatment – Fourth – treatment

– –

28.6 –

2.9 –

Government hospitals 13.5 64.4

Religious healer – 3.9

59 100

9.5 –

Source: Field survey To calculate the percentage for the total patients under first, second, etc., treatment, the total number of patients in the sample, i.e. 229, has been taken as a denominator To calculate the behaviour of patients, i.e. the percentage of patients visiting different places at various stages, the total number of patients at each stage of treatment has been taken into consideration

a

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while about 46% of patients have gone up to the third phase of treatment. It is noted that about one-third of the patients have tried some kind of home treatment that includes diet remedy, exercise or some medicine during the first phase of treatment. A common trend has been identified that most of the patients move to private doctors if they do not get relief from the home treatment. However, it is clear that about 50% of the patients have approached private practitioners during the first phase of treatment. Interestingly, no one has gone to the religious healer for the initial treatment. Indians, who are believed to be orthodox, go to the faith healer or religious healers once the available source of healing does not provide them with the required relief.6 The survey has shown that during the second phase of treatment, about 4% of patients approached the religious healer, while during the third phase of treatment, about 10% of the patients went to the religious healers. The table also indicates the prevailing unfriendly environment at the government hospitals. During the first phase of treatment, only 14% of the patients went to government hospitals in spite of the fact that patients had to pay more when they visited the private practitioners. This is evident that when they came to know that they were suffering from tuberculosis, they shifted to the government hospitals as the medicines were free as most of these patients found it difficult to cope with the price of the medicine. Completion of suggested medical regimen is a pre-requisite for the treatment from tuberculosis. It has been noticed several times that the incurable form of tuberculosis is a result of the discontinuation of the treatment process.7 Table 6.14 shows the percentage of patients that completed the suggested medication at different stages of treatment. About 70% of the patients replied that they completed the suggested treatment, while about 11% were found continuing with the treatment. Only about 20% of the patients had discontinued the treatment process because they did not get relief. During the second phase of treatment, the percentage of patients who discontinued the treatment increased, and about 33% of patients reported Table 6.14  Completion of treatment

Completion of treatment First treatment Second treatment Third treatment Fourth treatment

Total number 229 205 105 39

Percentage of patients during each stage of treatment Yes No Continuing 69.4 20.1 10.5 18.5 32.7 48.8 21.9 15.2 62.9 – – 100

Source: Field survey

6  India was often referred to the land of magicians and snake-charmers, but analysis of the behaviour of the patients in the contemporary situation where patients are blamed not to come to the ‘reliable’ place of healing suggest otherwise. 7  MDR – multidrug-resistant form of tuberculosis is when bacillus stops reacting to certain kinds of drug. Several researches have shown that this may be caused because of incompletion of the regimen that kills the bacillus completely.

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Table 6.15  Reason for change during treatment

Reasons for change First change Second change Third change

Total number 205 105 39

Percentage of patient during each stage of treatment No relief Not cured Money 1 2 3 Others 2 and 3 42.9 54.6 2.5 – – 32.4 53.3 2.9 4 7.6 20.5 43.6 23.1 – 12.8

Source: Field survey

discontinuance. It seems that when they once changed the healer, their expectations increased, and they had less patience for fruitful results. After changing the healer so many times, they realized the uselessness of such a practice and stuck to the healer. Reasons for the continuation of the treatment process at the later stages can be several. They may have been advised not to change the doctor, or their disease might have been correctly diagnosed, or they might not have felt enthusiastic about changing the healer again. The fast recovery of tuberculosis patients in the initial phase of treatment often becomes a reason for the patients to become defaulters. The symptoms of tuberculosis subside after a few initial doses of medicine, and the patient thinks that he or she is well and discontinues the medicine. However, it is noticed that patients have changed the doctors or the place of treatment due to different reasons. Most of these patients at different stages of treatment have said that they changed because they were not cured from the symptoms (especially, cough and fever). These symptoms, they said, subside with the medicines but again start once they stop the medicines for the prescribed duration. Table 6.15 shows that during the first phase of treatment, about 43% patients have reported no relief to the symptoms of the disease from the medicine, and this is the reason behind the change of the doctor. About 55% of the patients reported that they were not cured from the suggested medicine, and that has been the reason for the change in the doctor. Only about 3% of patients have reported that they had changed the doctor because they could not comply with the high cost of treatment. During the second phase of treatment, the percentage of patients, who reported no relief is less (about 32%), but the patients who reported not fully cured is more than 50%. About 3% of patients changed the doctor because they could not bear the cost of treatment, while about 8% of patients reported that they had to change the doctor as they not only were unable to pay the doctor but also did not foresee the chance of being cured. The majority of the patients who changed the healer during the third phase of treatment did so because they were not cured even after the completion of the suggested regimen. That means the real cause of the illness was not diagnosed. At this stage, some patients reported that they shifted to government hospitals when the doctor told them that they were suffering from tuberculosis. About 23% of the patients were found to be in this category. These patients shifted to the government hospitals or chest clinics as the cost of medicine became out of their reach.

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Table 6.16  Relief from the treatment Total Relief from the treatment First treatment Second treatment Third treatment Fourth treatment

229 190 104 39

Percentage of patients during each stage of treatment* No relief Partial relief Satisfactory Complete relief 37.6 55 7.4 – 17.9 46.3 34.7 1.1 7.7 57.7 34.6 – – 66.7 33.3 –

Source: Field survey *Total refers to the number of respondents (patients) at each stage of treatment. There are more patients at different levels, but some of them have not answered this question. To calculate the percentage of patients getting relief, the total number of patients, who have responded at each stage of treatment, has been taken into consideration

Patients go for different kinds of treatment to get relief from their suffering. For a common person, the symptoms are the manifestation of suffering. Once they got relief from the reported symptoms, they would continue with the suggested treatment. A reverse situation was also possible that they discontinue the medicine once they had the feeling that they were being cured. Both situations were equally common among tuberculosis patients. The result of the survey (Table 6.15) has shown that the majority of the patients during the different phases of treatment changed the doctor because they were not cured. However, some patients also discontinued the medication once their suffering subsided. Table 6.16 show the patient’s response to the relief from the treatment. It is noticed that during the first phase of treatment, about 38% of the patients reported that they did not get any relief, while only 18% of patients replied in the negative during the second phase of treatment. These were the patients who could be taken as the expected ones to change the place of treatment. About 55% of the patients reported that they got partial relief during the first stage of treatment, while about 46% of the patients reported partial relief during the second phase of treatment. Some of these patients would also probably move to other healers. During the first phase of treatment, only about 7% of the patients reported having been satisfied with the treatment. The reason behind the low percentage is that majority of the patients in this phase of treatment went to RMP or private practitioners and did not get relief. During the second, third and fourth phases of treatment, about 34% of patients reported satisfaction from the treatment. Importance of the rehabilitation process, which is important to check the resurgence of the disease in the individuals, has often been highlighted. The type of life, which the treated tuberculosis patients lead, can rarely be physically strenuous: some limitations have to be imposed if the disease is not to become active again (Houghton et al. 1953). The patient’s mode of life must be modified to suit his or her environment, and the environment must be modified to suit the patient. The patients reported that they changed doctors because of two main reasons: (a) when they are not getting relief from the symptoms and (b) when they are not cured completely. However, there are other reasons to change the healers like familial responsibilities at the native place, high cost of treatment in the private sector and insincere treatment at public hospitals.

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133

Meaning of Illness Differences in an individual’s health, longevity or occurrence of a disease are important manifestations of socio-economic differences that exist between and within different ecological regions. Factors like cultural practices, individual’s response towards disease and the treatment process are also important for the existence of a particular type of disease pattern. The medical profession and its practitioners are a reflection of our culture, its values, beliefs, and symbols. Central to culture is faith in progress through industrial growth, science and technology. However, these factors are not reflected in statistical tests as quantification of these variables is quite tenacious. An increasing reliance on quantification in the epidemiological studies and their creditability in academic circles often compels the researchers to use such techniques to show either their usefulness or their limitations. Unavailability of a certain kind of information (especially on political groups, their obvious and hidden influence on the decisions taken to control or improve the health situation) that is needed to understand the political ecology of disease in society shows how certain kinds of information is discouraged by the state. This tendency persists in spite of repeated requests from the professionals and often from its own deputed officials and commissions. Even if these kinds of information are available from individual researches, questions are raised on their validity and their suitability for generalization. This has limited the use of such vital information that could have been the basis for understating a particular kind of morbidity pattern of a particular disease. Against this backdrop, this chapter tries to analyse three important issues among the patients of tuberculosis: • Analyse the history of disease among the patients who are currently suffering from the disease. Attempts have been made to analyse the factors that are related to the history of disease and its association with the occurrence of tuberculosis. The history of tuberculosis in the family has also been taken into consideration. • Analyse the treatment-seeking behaviour of the patients including the history of various other treatment processes, which the individual has gone through. • Contextualize the perception of the patient about the disease and about society. A group may react to certain situations in a similar way, but an individual reacts to different phenomena differently. Illness in an individual brings different behavioural changes based on the perceived threat about the particular illness. This behavioural change is noticed in the way individuals interact with their surroundings. The patient’s own experience in society as a sick person becomes important in these interactions. These experiences can be expressed in several ways such as the way he or she interacts with others. The individual’s responses not only are important in the recovery process but also need to be analysed in terms of the perception of the patients about the disease itself. Political ecology of disease in the broader sense accepts the role of individuals and their perceptions about the disease. Language is the most common expression of the interactions in contemporary human society. Meade in his work has identified this fact and noted that the

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experiences and interactions of the people are expressed by symbols that constitute language (Mead 1934). Like any other expression or phenomena, these interactions also vary in different contexts. With change in the context, the meaning of the phenomena is changed. The contextual perception of individuals about society’s perceptive change towards them, their perception towards illness, towards society etc. in theoretical literature is called symbolic interactionism (Stryker 1980). The nature of perceived relationships between individuals and their world that is developed within the context of specific events is called ‘meaning’ in the theoretical framework of symbolic interactionism (File). There are different conceptions of ‘meaning’, some close to symbolic interactionism, while others related to ‘coping’ or ‘adaptive coping’.8 Individual’s perceptions of the potential significance or real significance of the occurrence of tuberculosis, for the self and one’s plan of action, are studied here. Close to File’s definition, it could be called ‘meaning in illness’.9 While analysing the perception of patients, in general, two kinds of ‘meaning’ are noted: ‘self-meaning’ and ‘contextual meaning’. Meaning in this analysis is taken as the perception of the patients. Perceived perception of the illness can have different meanings for the patient for him/herself and for society. Perceived effects of illness on various aspects of one’s identity refers to self-meaning, while contextual meaning pertains to perceived characteristics of the illness itself and the social circumstances that surround it. There are several issues that affect perception and are important to the formulation of perception (meaning). These are: • The extent to which a person perceives his/her ability to control the situation • The objective ways in which illness is affecting the individual’s current ability and function • Any changes related to illness, i.e. change in people’s attitude towards the patients Political ecology is the basis for perception related analysis, and interactionist perspective of perception has provided the basis for categorizing the questions in these sets. Two sets of questions have been formulated, and the answers have also been analysed in two sets. The first set explains the self-meaning, i.e. the changes the patients are feeling within themselves. The second set explains the contextual meaning of illness, i.e. how the patient is interacting with society and how society is reacting towards the illness and the patient. The various dimensions along with specific questions that form the basis of this conception are summarized in

8  Lipowski (1970) has noted that meaning is close to symbolic interactionisml Reed (1991) has conceptualized meaning in the framework of self-transcendence and defined it as a developmental phenomena, Others like A.P. O’Connor and et al. (1990) have understood meaning as individual’s ability to find a sense of purpose. 9  File has done it for Caner patients and use the concept serious illness. For detail on meaning in illness, see B.L. File (1994) Op. Cit.; however, knowing the social stigmatization of tuberculosis and the effect of that on individual in the social context and his worry towards various things including detachment justifies this exercise for tuberculosis patients.

Meaning of Illness

135

Table 6.17  Summary of the interview content related to the perception about illness Different dimensions 1 Impact of the illness on the individual’s relationship to his/her social world

2 The impact of tuberculosis on self-­ perception identity 3 The potential impact of tuberculosis on future plans

4 The individual’s response to the illness

5 Attitudinal change of people towards the patients

Related questions 1. How has tuberculosis affected their relationships with family and friends? 2. How has tuberculosis affected their job and the other employee’s interaction with you? 1. How has illness affected your way of thinking about yourself? 1. How do you see your diagnosis affecting how your future? 2. How do you see illness affecting your ability to attain future goals 1. What has been the most difficult aspect of having tuberculosis? 2. Has tuberculosis been any positive thing for you about the illness experience? 1. Have people become more sympathetic or coercive towards you? 2. Do such changes make you feel more uncomfortable?

Source: Author

Table 6.17. Individuals try to make the situation manageable, if they feel that situation is not going to change. The potential for change in one’s personhood as a result of the onset of illness is tremendous. The meaning or perception ascribed to the illness as it pertains to the self is the perceived gain or loss related to an individual’s identity in relation to the world of objects, events and relationships. Usually, life-threatening illness has the potential of altering the roles individuals assume, threatens the individual’s body image, and diminishes his autonomy and personal control (Taylor 1983). However, in a society like India, where tuberculosis is a disease that kills people every day, patients feel threatened by the disease. This threat also results in a change of the perception of the patient about the disease, about him-/herself and about society. The specific changes that are noticed in this study are the loss of personal control and threats to self-esteem. The sense of loss of control of personal power can be illustrated by the comment of a patient who stated, ‘You have to depend on doctor and do what they say’. Similarly, a woman reported that after the illness, she did not feel sufficient even for her kids and lost faith in life (jeevan se bharosauthgayahai). These statements do indicate a kind of vulnerability that comes from the extreme level of uncertainty and the sense that one has lost control. The loss of personal control is an important dimension of changes in perception and occurs when individuals become dependent on medical experts for maintaining their lives and upon family members and friends for helping them through living everyday life. Illness from tuberculosis also poses a significant threat to self-esteem because it frequently threatens the roles one assumes and it can reduce the individual’s social status and threaten inter-personal relationships. Many patients went on record saying this. A man stated, ‘I feel like I am not much good

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for my family or for that matter anybody’ (mujhe lagta hai ki main kisi ke kam ka nahi raha). The sense of low self-esteem was at its worst in the patients who were suffering from resurgence of the disease due to multidrug resistance (MDR). One such patient stated, ‘I am not the person that I was and that hurts me quite a lot’ (main jaisathaabwonahinrahaaur ye buralagtahai). Other perceptible changes in the individual with regard to him-/herself have been the change in body image. Indians are usually believers in God, and so, they generally accept that life is not quite predictable. The occurrence of tuberculosis in them has given them more reason to believe in this. The contextual perception of patients is the way they interact with society and the way society reacts. It is noticed that tuberculosis in India is still not considered a common disease. Patients are afraid that if their illness is known, they will be treated as lesser beings. This threat also contributes towards lowering the self-­ esteem of the patients. Illness from tuberculosis has a significant impact on personal relationships both positive and negative. Within a family, each member is forced to face the changes. The change in relationship with the spouse, change in relationship with in-laws and change in relationship with kids are more meaningful for women than for men. Some of the women said that they feel closer ties with their husband than before, while many were deserted by the family. The situation was clearer with the unmarried girls, as their parents were quite worried about their marriage. All parents replied in negative while asked if they would tell the prospective groom about the illness of the daughter. They said that if they did so they would not be able to marry their daughters. The young boys do not have to face such problems. When asked about marriage, they wondered why such questions were asked. Patients were worried about the world, about the dreams they had for their children. One woman stated, ‘I am worried about my kids; what will happen to them if something happens to me? I even cannot kiss them or cuddle them. What about the emotional side of my life’ (bachhonkichintahia, unkakyahoga, main unhenpyarbhinahinkarsakti)? Contextual perception and self-perception are not completely different, and both work simultaneously for an individual. Generally, self-perception has a bearing on contextual perception, and contextual perception shapes the individual’s feeling of loss of control or loss of self-esteem.

Facing the Silent Gaze Some of the patients who had come from nearby villages and were under treatment did not want to be recognized as patients in Delhi. For the new migrants, there are many problems in cities starting from getting a job to having a decent accommodation. The patients reported that if the diseased status is known, the co-villagers would either advise them to go back or would not share accommodation. They would also not get any job. When asked about the infection that they would transmit to their ‘well-wishers’ or ‘helpers’, they showed innocence. They are not aware of the harm they are doing to the people, who are helping them out in their initial stage

137

Family and Family Support

of settling in the urban areas. The reverse direction of migration is equally responsible for a patient for being a defaulter. When seasonal migrants go back to the villages to fulfil their social obligations, they stay at their native place for more than the planned period and discontinue the medicine, as the stock of medicine carried along gets over.

Family and Family Support Disease history of the family member of a patient indicates the genetic factors, the probability of infection from the tubercle bacillus and the vulnerability and susceptibility of the individual towards the disease. Genetic factors determine the physical endowments of individuals (Murray and Smith 2001). They comprise a set of physical characteristics including risk factors and sometimes certain congenital defects or illnesses. It is known and established that tuberculosis is not a hereditary disease but is an acquired disease and ‘nobody is born with tuberculosis’. Heredity was initially understood as a factor that affects the incidence of tuberculosis in an individual. After the establishment of germ theory and analysis of the behaviour of the bacillus, the idea was questioned and heredity no longer is taken as an epidemiological factor. However, it plays an important role as the family history of the patient indicates the available nutrition level of the individual at different stages of his or her life. Besides, the exposure to infection can be ascertained once the history of tuberculosis in the family is known. Table 6.18 presents the account of deaths in the family of the patients. It is noticed that a total of 61 patients reported deaths in their family out of which 5 reported deaths of more than one (2 deaths) person during the last five years. Out of a total of 229 patients, 66 deaths were reported in the families of the patients. About 70% of these deaths were untimely deaths. The cause of 23% of the total deaths was not reported, as they were not certain about the reason of death. Some of these deaths occurred in the villages of the patients from where they had migrated. In the rural areas, deaths are often not reported to the registration authority and the cause of death remains uncertain. In the urban areas especially in large metropolitan cities, the probability of such carelessness on part of citizens is less, because of two reasons. First, if one wants to take the dead body, he or she cannot cross the municipal boundaries without a death certificate. Second, the authorities within municipal Table 6.18  History of deaths in the family of the patients Deaths Number Percentage

Total 66 100

Source: Field survey

Reason of deaths Old age Accident 20 9 30.3 13.63

Tuberculosis 20 30.3

Cancer 2 0.03

Not known 15 22.72

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Table 6.19  History of tuberculosis in the family of the patients Tuberculosis Number Percentage

Total 62 100

Brother/sister 9 14.5

Parents 10 16.12

Wife/husband 10 16.12

Son/daughter 20 32.24

In-laws 13 21

Source: Field survey

boundaries do not allow the performance of last rites without a death certificate. Tuberculosis was reported as the major cause of death and accounted for about 47% of total untimely deaths. Majority of them took medicine for tuberculosis and died during the course of treatment (Table 6.19). The recent cases of tuberculosis that are undergoing treatment and the recently cured cases of tuberculosis among the family members of the patients indicate possible infection within the household. It is understood that close relations are more prone to infection. Table 5.14 presents the history of tuberculosis among the living family members of the patients.10 It is noticed that the highest proportion (32.24%) of patients reported that their son or daughter have or have had tuberculosis. A total of 16% of the patients reported that their parents have or have had tuberculosis. Incidence of tuberculosis among spouses is about 16%. More women (60%) reported the history of tuberculosis in their husbands. About 14.5% of the patients reported their brother or sister having had tuberculosis, while 21% of the patients reported that their in-laws have or had tuberculosis.

Politics, Ecologies and Narratives Illness of any kind brings a blow to both body and mind. The nature of disease and prevailing perception about that particular disease shape and determine the extent of mental blow. If the disease is one that is stigmatized, there would be a severe mental blow to the individual suffering from that disease; also, there would be lower possibility of these individuals to share their agony with the people in the neighbourhood. They would rather try hiding the disease especially the vulnerable group. Global experience of patients suffering from AIDS confirms this. Tuberculosis patients bear a significant threat to self-esteem. The illness poses a significant threat to the individual’s social status and their interpersonal relationships. The perceptive change among the tuberculosis patients in India are found to be of two kinds: (a) change in the perception about self and (b) change in the perception about society. The change in the perception about self is related to the (a) loss of personal control and (b) threat to self-esteem. The patients reported having lesser control over what they can do in their everyday life, as it is either decided by the physician or by the  The data includes tuberculosis cases during last 10 years. Majority of the cases were reported to have occurred within 5 years. Only those cases of past incidence have been included who are living with the patients.

10

Conclusions

139

immediate family members. This makes them feel having relatively lower self-­ esteem. The contextual change is also related to the changes in the perception about self. Generally, self-perception has a bearing on contextual perception, which shapes the individual’s feeling of loss of control or loss of self-esteem (File 1994). The negative change in the perception of patients is also due to the poor condition of the chest clinics (DOTS centres). DOTS providers at these clinics treat individuals as lesser mortals who are incapable of taking care of them, and it is their incapability that is addressed by the provider as the treatment is to be ‘supervised’. Socio-economic background of the tuberculosis patients provides vital insights for the analysis of their treatment-seeking behaviour. Primarily the patients enrolled with the DOTS centres belong to the poor and marginalized section. Most of them also were migrants, which is one of the reasons for them being ‘defaulter’ in compliance with the treatment regimen. The reasons for the non-adherences to the tuberculosis treatment are many like social, operational or physiological (related to drug intolerance, drug reaction, etc.). The economic condition, availability of employment opportunities, familial responsibilities, etc. affect the treatment behaviour of the patient. It becomes more evident in urban areas, as in cities like Delhi, many people come from neighbouring states and stay temporarily. Experience from the tuberculosis centres shows that their poor economic condition and social and familial responsibilities at the village often turn them to be a defaulter in the process of treatment. If they suffer from the disease and start treatment in the city and go back to their villages during harvesting seasons or for social festivals or simply because they are not able to go for work or cannot survive without working, they most likely case become defaulters (Jain 2002). It is surprising that despite knowing the socio-economic conditions of these patients, no alternative or linked treatment regimen is implemented. The patient’s opinion is often taken as their excuse to not complete the treatment, which clearly is nothing but ‘victim blaming’.

Conclusions Tuberculosis is a disease that kills people every day; patients still feel threatened. This threat results in a change of the perception of the patient about the disease, about the self and about the society. The specific changes related to self that are noticed are loss of personal control, threats to self-esteem, loss of self-control and change in body image in the sense that life is predictable. Tuberculosis in India is more than a disease. Stigmatization of tuberculosis patients is a common phenomenon even in metro cities like Delhi. Social and economic conditions of the people are found as the determining factors in the occurrence of tuberculosis. The high proportion of scheduled caste population affected by the disease indicates this. About 26% of the patients belong to the scheduled caste category, while 43% of them are from other backward classes. Most of them belong to low SLI group. Majority of the patients were from low SLI group (72%), while only 5% of the patients belonged to the high SLI. It is not merely the level of literacy, but education

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that affects the occurrence of the disease and the treatment-seeking behaviour of an individual. The economic condition, availability of employment opportunities and familial responsibilities affect the treatment-seeking behaviour of the patients. Relatively poor patients access public healthcare institution. The poor economic conditions and social and familial responsibilities in the villages turn the migrants as defaulters in the treatment process, as they go back to their village when such need arise. Tuberculosis is an infectious disease, and if a member of the family is infected, others become more vulnerable to the bacillus. About 24% of the patients reported that some other member(s) of their family had suffered from tuberculosis at some point in time. In 33% of cases, parents were found to be infected after their wards were suffering from the disease, and about 16% of children got infected when their parents were suffering from the disease. Analysis of treatment-seeking behaviour of the patient strengthens this fact, and it is noticed that hardly any patient comes directly to the DOT method of treatment. Here, the attempt has been made to analyse the previous treatment behaviour and the response of the individuals towards the DOT measure. It is important to see how the affected people are being treated and whether or not their will or expectations are taken into account while giving them the medication.

References Amrith, S. (2004). In search of a magic bullet for tuberculosis: South India and beyond. Social History of Medicine, 17(1), 113–130. Banerji, D., & Andersen, A. (1963). A sociological inquiry into an urban tuberculosis control programme in India. Bulletin of World Health Organization, 29(5), 685–700. Basham, A. L. (1998). The practice of medicine in ancient and medieval India. In C. Leslie (Ed.), Asian medical systems: A comparative study (pp.  18–43). New Delhi: Motilal Banarsidas, Publishers. Blane, D. B. (1996). Collecting retrospective data: Development of a reliable method and a pilot study of its use. Social Science and Medicine, 42(5), 751–757. File, B.  L. (1994). The conceptualization of meaning in illness. Social Science and Medicine, 38(2), 309–316. Houghton, L. E., Sellors, T. H., & Starkie, E. T. W. (1953). Aids to TB nursing. London: Bialliere, Tindle and Cox. Jain, P.  K. (2002). Sociological Aspect of T.B.  – Experience at R.K.  Mission T.B.  Clinic. In S.  Deshikatmananda (Ed.), T.B. control in India: Ramakrishna mission’s contribution. New Delhi: Ramakrishna Mission. Kirmayer, L.  J. (2004). The culture of healing: Meaning, metaphor and mechanism. British Medical Bulletin, 69, 33–48. Leslie, C., & Young, A. (1992). Pathways to Asian medical knowledge. Berkeley: University of California Press. Liefooghe, R., et al. (1995). Perception and social consequences of tuberculosis: A focus group study of tuberculosis patients in Sialkot, Pakistan. Social Science and Medicine, 41(12), 1685–1692. Lipowski, Z.  J. (1970). Physical illness, the individual and the coping processes. Psychiatry in medicine. Apr, 1(2), 91–102. https://doi.org/10.2190/19q3-­9ql8-­xyv1-­8xc2.

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Mahler, H. (1969). “Priority Considerations for the Formulation of an Effective National Tuberculosis Programme in Africa”, Seminar on Integrated Tuberculosis Control, Brazzaville. WHO, AFR 192/03–04, Mc Murray, C., & Smith, R. (2001). Diseases of globalization: Socioeconomic transitions and health. London: Earthscan Publications Ltd. Mccoll, M.  A., et  al. (1995). Structural relationship between social support and coping. Social Science and Medicine, 41(3), 395–407. Mead, G. H. (1934). Mind, self and society. Chicago: University of Chicago Press. Moss, L., & Goldstein, H. (1979). The recall method in social surveys. London: Institute of Education, University of London. Reed, P. (1991). Toward a nursing theory of self-transcendence: Deductive reformulation using developmental theories. Advanced Nursing Science, 13(4):41–46. https://doi. org/10.1097/00012272-199106000-00008. Stryker, S. (1980). Symbolic interactionism: A social structural version. Menlo Park: Bejamin/ Cummings. Taylor, S. E. (1983). Adjustment to threatening events: A cognitive theory of adaptation. American Psychology, 38, 1161. Walker. (1954). The story of medicine. Oxford: OUP. Young, A. (1976). Internalising and externalising medical belief systems: An Ethiopian example. Social Science and Medicine, 10, 147–156.

Chapter 7

Tuberculosis: A Medical Mirage

The years and centuries have gone into actively and consistently fighting against tuberculosis in different parts of the world. India for the reasons explained already in this book has been in focus since it attained independence in 1947. The first few years, the debate remained centred around the efficacy and need of BCG vaccination. With the introduction of the National Tuberculosis Control Programme, which started in 1962, aggressive vaccination continued though proven ineffective by 1979. Growing infections in the form of HIV and its association with tuberculosis at least since 1984 demanded a new initiative, and the years 1992–1993 provided that in the form of Revised National Tuberculosis Control Programme (RNTCP), which is popularly known as Directly Observed Therapy Short Course (DOTS). The lowered duration of medication was supposed to be the panacea for the patients, but it proved to be otherwise with increasing cases of drug resistance in the form of MDR and XDR. This chapter discusses the challenges which are to be addressed, the need to change the approach in tackling the challenges and the intersectionality of gender and class which affects nutrition and brings in inequality that shapes the treatment trajectory. The chapter also deals with possible theoretical and conceptual engagements with the aim to bring the patient in the centre.

Medication and Its (Limited) Success! Chemotherapy brought significant change, and the world witnessed certain levels of success in containing tuberculosis and also curing those infected by the disease. However, late detection proved to be a limitation in controlling the spread of tuberculosis and also the rate of success in treatment based on chemotherapy. Slow, insensitive diagnostic methods, particularly for the detection of drug-resistant forms and in patients with HIV infection, are considered some of the major hindrances in the global control of tuberculosis (Boehme et al. 2010). Resistant nature of bacillus to the drug is not new, and it is noted maybe not so much in popular remembrance © Springer Nature Switzerland AG 2021 B. K. Choudhary, Ecology of Tuberculosis in India, Global Perspectives on Health Geography, https://doi.org/10.1007/978-3-030-64034-7_7

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that within 4 years of introduction of streptomycin, the bacillus became resistant to it. The study by Boehme et  al. (2010) based on cross-country evidences showed growing tendency of resistance against both the drugs, viz. rifampin and isoniazid; the phenomena is known as multidrug resistance (MDR). An insufficient or inaccurate dose of drugs treatment often met with the development of drug resistance, either multidrug resistance (MDR) or extensive drug resistance (XDR). MDR and XDR MTb breeds through secondary infections which makes future prospects of disease control more difficult (John et al. 2013). Another major challenge specifically in India is possible incorrect treatment of tuberculosis. Pai (2013) while writing an editorial on tuberculosis control in India wrote, By the time patients are diagnosed with TB and started on anti-TB therapy in RNTCP, they have already infected many people in the community. This is because 80 per cent of India’s healthcare is in the private sector, and most patients first go to private healthcare providers, including unqualified providers. This results in long diagnostic delays before correct diagnosis is made.

Notification of tuberculosis is yet to be made legally binding. Consequently, the notification rate is still only 58%. It is though encouraged, and now, DOTS centres have started giving medicines to those diagnosed by the private doctors; still, it is a long road to cover to ensure an end to an incorrect diagnosis. The upcoming of new drugs delamanid and bedaquiline gave hope to those who were struggling to fight MDR and XDR tuberculosis. The other repurposed drugs such as linezolid, carbapenems and clofazimine were contributing to enhancing the strength of the fight against tuberculosis. WHO in 1969 after induction of rifampicin in treatment regimen argued that “the technology for controlling tuberculosis had been standardised and simplified to such an extent that the problem lay merely in setting up an effective…sales organization with standardised consumer goods” (Mahler 1969). The WHO brought in the terminology of consumer and standardization to practice; prior to this adoption treatment in India was usually seen as the uncontested domains of physician and individual physician were supposed to take the best measure based on their diagnosis of the patients. The very language of consumer choice introduced a degree of autonomy and also to some extent voluntarism, which was absent from the earlier conceptions of tuberculosis ‘patients’ or ‘victims’. However, what emphasis was to be given was on standardization, as one of the major reasons for an inaccurate dose of a drug and late detection is due to non-standardized treatment protocol regarding tuberculosis. This shift in the policy and in the WHO terminology is noticed in India after 1993, when RNTCP was introduced with directly observed therapy. Velayutham et al. (2018) noted that, under RNTCP, newly diagnosed smear-positive pulmonary tuberculosis usually was treated with a 6-month thrice-weekly regimen. The treatment under DOTs regimen consisted of an initial intensive phase (IP) of isoniazid (H), rifampicin (R), pyrazinamide (Z) and ethambutol (E) for 2 months followed by a continuation phase (CP) of H and R for 4 months (2 H3R3Z3E3/4H3R3). During the initial intensive period, each dose was to be given under direct observation. The following continuation phase was less taxing

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for the patient as patients were supposed to visit the DOT centre only for the first week when the dose was given under direct observation and the remaining two doses of the week were self-administered. Whether or not a patient is cured is ascertained through follow up sputum microscopy at the end of treatment completion. On this basis, RNTCP-DOTS claimed a success rate of about 85%. Ironically drug resistance and consequent resurgence of tuberculosis, which was the case of developed societies, are now being witnessed in the Third World (Choudhary 2014). Initially, it was thought to be due to discontinuation of medication process or incorrect medication regimen, however, the field-based studies have brought in evidences which suggest a significantly lower cure rate (77%) than claimed (Velayumtham et  al. 2018). While RNTCP using DOTS controlled mortality and put more and more on chemotherapy, it largely is also seen responsible for the growth of MDR, XDR and TDR.  One of the reasons for this drug resistance tuberculosis was the change in the diagnostic method from culture-based to sputum-based. Further, it was argued that in the DOTS model, drug resistance is inferred by failure to respond to treatment, typically after 6 months of therapy, which in itself is sufficient time to make the thing further worse. The time of 6 months in all probability would aggravate the situation and lower the possibility of getting cured. Three specific problems due to this approach to drug resistance can be outlined: (1) progressive damage to the lungs, even death; (2) continuous transmission of microbes that are extremely difficult to treat; and (3) the possibility of amplifying drug resistance, i.e. the patient begins therapy with INH- and RIF-resistant disease and, during treatment, acquires resistance to PZA or EMB (Iseman 2002).

Resurgence of Tuberculosis The resurgence of tuberculosis questioned the veracity of the so-called antibiotic revolution, which was supposed to be the most crucial factor for the disappearance of tuberculosis in the public mind (Farmer 2001). Though, the said disappearance never happened. Tuberculosis continues to be one of the major public health threats, with an estimated 8.7 million new cases per year. Further about 1.4 million deaths from the disease occur annually. India has been in the news lately because of the international attention around the emergence of ‘totally drug-resistant’ tuberculosis in Mumbai and the growing concern that routine tuberculosis control (i.e. the directly observed treatment short-course (DOTS) strategy) may not be sufficient for reducing tuberculosis incidence in the country. The selection of pilot areas for DOTS itself can be questioned following the political economy and political ecology approach. The project did not choose the areas where mortality was highest or was having high morbidity. Further, the selected areas for implementation of DOTS also remained problematic with respect to the marginalized section of the population. In the cities, where people come from the rural areas and stay temporarily, the majority does not have an address, which can be verified and are considered as probable defaulters and are not registered for treatment. The patients, who are

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considered to be probable defaulters, are discouraged to be admitted under DOTS, so that the cure rate under the new programme does not get affected. This kind of treatment regime cures a few at the cost of negating the need for many in the cities, simply because the patients do not have a permanent place to live. The problem remains that they discontinue the medicine and go back to their villages and spread the disease in the rural areas, where the health-care facilities are neither easily available nor accessible (Amrith 2004). Study of tuberculosis patients in Delhi has found resurgence of tuberculosis amongst those who have successfully completed the treatment under DOTS (Choudhary 2006). A decade later, a large-scale study by a team led by Banurekha Velayutham of National Institute for Research in Tuberculosis (NIRT) found that resurgence of tuberculosis amongst those who completed the medication under DOTS is not uncommon. The NIRT team had a sample size of 2384 spread across 12 districts of India. Out of these, 807 patients were excluded from the study for various reasons. The report found that out of 1565 patients, only 1210 (77%) were successfully treated; 93 (6%) patients died during the treatment, and treatment failed for different reasons for 126 (8%) patients (Velayutham et al. 2018). As per this study, tuberculosis recurrence rate was found to be 12.7 per 100 person years within the first year after being declared as successfully treated. The report has all the details about patients reporting for recurrence at different time intervals from 6 months to 1 year for different regions of the country. The challenge for the ‘End TB Mission’ cannot be only a mere 12.7 per 100 years recurrence of the disease, but the actual 23% patients who could not be cured for whatever reason despite being enrolled under RNTCP.

Challenges Ahead India, without Public Health Surveillance (PHS), remains even today without validated denominator-based incidence, prevalence or mortality data. Out of an estimated 1.4 million deaths globally, an estimated 4.8 lakh people die every year due to tuberculosis in India (TB India 2017). For 2015, the joint monitoring report suggested over 270,000 deaths due to tuberculosis in 2013. Further, India reported 1.24 million new and relapsed cases in 2013, by far the largest burden of any country. Based on the newer in-country evidences, the Government of India together with the World Health Organization (WHO) revised the National estimate of tuberculosis upwards. The upward revision of the disease is a serious concern and a possible limitation for the ‘End TB Mission’(DGHS 2018). As per the Global TB Report 2016, an estimated 28 lakh incident TB patients occurred in a year. The upward estimation indicates a clear challenge to the ongoing effort and a need for a stronger strategy to contain the disease. Drug resistance tuberculosis is one of the major challenges that the world has to deal with. Unfortunately, India is having the highest number of MDR cases in the world. For India, though, studies on drug resistance tuberculosis have not been unknown, as ICMR carried out first survey way back in 1968 and since then there have been continuous studies on drug-resistant

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tuberculosis (Paramasivan and Venkataraman 2004). Resistance to rifampicin, streptomycin and other anti-TB drugs has been detected for decades, and MDR TB also was seen in early surveys, although at different levels depending on the place, time, and testing parameters. The increasing burden of drug-resistant tuberculosis introduces new challenges to disease control and treatment. The 2009 status report on RNTCP mentions about drug resistance tuberculosis and specific survey in two states of Gujarat and Maharashtra. The report highlighted, To know the prevalence of drug resistance amongst new cases and re-treatment cases, state wide community based surveys have been carried out in the states of Gujarat and Maharashtra. These surveys estimate the prevalence of Multidrug Resistant TB (MDR-TB) to be about 3% in new cases and 12-17% in retreatment cases. These surveys also indicate that the prevalence of MDR-TB is not increasing in the country. Two more surveys are underway in the states of Andhra Pradesh and Uttar Pradesh and there is a plan to undertake a survey in Orissa in the near future (DGHS 2009).

Successive reports showed concern about MDR tuberculosis and the cost of treatment of drug-resistant tuberculosis. The RNTCP notified 17.5 lakh tuberculosis patients in 2016, and 33,820 drug-resistant tuberculosis patients are notified additionally. The higher number of drug-resistant patients poses a serious economic and clinical challenge to the tuberculosis control programme. It is not a happy situation to note that out of a total of 4.8 lakh MDR (cases resistant to rifampicin and isoniazid) to tuberculosis cases, about 1.3 lakh is in India (DGHS 2017a, b). The growing number and growing share in global MDR cases make India vulnerable in terms of not only challenge to eradicate the disease but also a possible economic stress on the individuals who are detected with the MDR or XDR (MDR-TB with additional resistance to both fluoroquinolones and injectables). Pontali et al. (2017) while writing an editorial for the European Respiratory Journal highlighted the issue of drug-­ resistant tuberculosis. They wrote, Multidrug-resistant (MDR) and extensively drug-resistant (XDR) tuberculosis (TB) continue to be challenging at both the patient and programme level. The World Health Organization (WHO) estimated 480000 new cases of MDR-TB in 2015 and an additional 100000 cases diagnosed with rifampicin resistant TB (RR-TB). India, China and the Russian Federation accounted for almost half (45%) of the total burden. Out of 580000 patients eligible for MDR-TB treatment, only 125000 (20%) were enrolled in treatment programme (Pontali et al. 2017).

Further, the success rate for the treatment of MDR tuberculosis has been roughly about 50%. MDR tuberculosis further gets deteriorated to pre-XDR (additional resistance to either a fluoroquinolone or a second-line injectable drug), XDR or beyond XDR. There is sequential decrease in the success rate of the treatment regimen. WHO in one of its study noted that in 2010, only 16% of global MDR tuberculosis cases estimated to exist among reported TB cases were actually enrolled in MDR TB treatment regimens. It is also estimated that as of 2010, fewer than 5% of tuberculosis patients were being tested for MDR TB in most parts of the world (Institute of Medicine 2012). The Institute of Medicine in its study noted that the status of MDR and XDR tuberculosis is yet not fully known. The report reads,

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According to data from WHO on global drug resistance, an estimated 3.6 per cent of global incident (new) tuberculosis cases, or a total of 440,000 cases, were MDR TB in 2008 (95 percent confidence interval, 390,000-510,000). The available data on drug-resistant TB are inadequate, however, and lead to an underestimation of the true global burden of MDR tuberculosis. In many developing countries where the MDR TB burden is likely to be significant, surveillance systems do not exist or lack the capacity to generate reliable data (Institute of Medicine 2012)

India in its 2009 status report noted the existence of MDR tuberculosis and based on the study of Gujarat and Maharashtra estimated about 3% new cases and 12–17% in the retreated cases to be MDR (DGHS 2009). The report did not talk about XDR or TDR.1 The study of the Institute of Medicine (2012) quoted a study by Reddy which estimated 2.3% MDR in new cases and about 17% MDR in retreated cases. Both of these are less than the global MDR rate of 3.3%. MDR cases continue to grow in number, and as per 2018 status report, India has 147,000 MDR cases. The latest WHO (2018) report estimates a hovering highest 24% of total resistant cases in India followed by about 13% in China. The figure for 218 is higher than what it was estimated for 2010 WHO report when it was estimated to have about 21% total MDR cases. India in addition faces challenges which are socio-political in nature for which concrete intervention is required and not mere rhetoric devoid of meaningfully engaged initiatives. Some of these problems related to deal with growing cases of MDR TB were discussed in the 2012 report of the Institute of Medicine: 1. Limited supply of human resources to carry out training and assessments of the disease. Indeed, India is a country where, in general, human resources in health care are limited and not well distributed. 2. There is a lack of funding for the management of MDR TB, especially given the high cost of second-line drugs as treatment is scaled up. There is a need to supply low-cost drugs to treat MDR tuberculosis. 3. Limited laboratory capacity for diagnosis and follow-up of MDR TB, though in recent years, about 600 laboratories have been added. After establishing the failure of BCG vaccination in preventing tubercle infection, the issue of childhood tuberculosis became another challenge India had to tackle. A report on a workshop on paediatrics tuberculosis in 2013 recommended, Asymptomatic children under 6 years of age, exposed to an adult with infectious (smear positive) tuberculosis, from the same household, will be given 6 months of isoniazid (5 mg per kg daily) chemoprophylaxis. It was agreed that pediatric-focused monitoring may preferably be an integral part of the programme and that A revision of the RNTCP training modules will be undertaken to include pediatric TB issues (Frieden and Khatri 2003).

1  The emergence of what has been described as TDR TB was reported in January 2012 (Udwadia et al. 2012) at Hinduja Hospital in Mumbai when four patients were found to be resistant to all first- and second-line drugs tested. India’s Revised National TB Control Program (RNTCP) has issued a response to the report and provided information on the program’s approach to combating all forms of drug-resistant TB. For more details, see TB India 2012 and report of the Institute of Medicine 2012.

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Addressing childhood tuberculosis was considered key to tuberculosis control in the general population. Pontali et  al. (2017) also argued that childhood TB, and specifically MDR-TB, remains a significant underestimated public health issue, particularly in low- and middle-income countries, where the burden is relatively higher. Unfortunately, one of the key aspects of childhood tuberculosis management is that only a minority of cases are bacteriologically confirmed, thus empirical administration of second- and third-line anti-tuberculosis drugs mainly relies on medical history related to previous contacts. Further, India also has a concentrated HIV epidemic with a substantial geographical variation. In 2007, there were an estimated 2.3 million persons living with HIV. The prevalence of HIV in tuberculosis patients ranged between 1% and 14% and the fight against tuberculosis complicated (WHO 2010). Another major challenge in India is the missing cases of tuberculosis, which are active and freely moving in the society without being treated and continue to spread the disease unhindered and unnoticed. This is important, especially in the wake of UN and WHO call for End TB by 2035, as Harries et al. (2018) also make it a point that infection control is the basis for preventing exposure to tuberculosis among non-infected individuals in health facilities and other congregate settings especially in the low- and middle-income countries. Another challenge to tuberculosis control is the risk to health staff. It is noticed that the DOTS centres are not well ventilated and the TB workers are exposed to the infection for relatively longer duration and are at risk (Choudhary 2006; Harries et  al. 2018). What is required is to ensure good natural ventilation (open windows and doors, enlarged or additional windows, and open skylights for cross-ventilation) at the treatment centres.

Inequality and Nutrition The secular downward trend due to economic improvement remains un-measured, though McQueen’s thesis cannot be questioned either which showed the world that the prevalence of tuberculosis in Europe especially England was controlled much before chemotherapy became available to the medical science. In the twentieth and twenty-first century, treatment of disease primarily remained focused on chemotherapy and early detection. National Tuberculosis Control Programme and Revised National Tuberculosis Control Programme (DOTS) depended on bio-medical interventions for tuberculosis control. Not only are poverty and undernutrition causes of the prevalence of tuberculosis, but also the poverty of the patients stood in the way of making early diagnosis and receiving treatment. Poor people and the poor family are especially those who seek treatment only when it comes to the level of survival of the body itself. There are multiple reasons for the same, including expected out of pocket expenditure, the imminent loss due to non-working hours and the transport cost (especially for the rural population). Those who are writing about tuberculosis in developed countries like USA, Canada or West European countries consider poor nutrition of foreigners as one of the causes of prevailing disease. For example,

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Fogel (2015) wrote that, additionally, foreign-born individuals and those who reside in impoverished areas or where malnutrition is prevalent are more likely to get infected. Surprisingly, neither the National Strategic Plan for Tuberculosis (India) nor the Global Report of Tuberculosis considered the role of nutrition important enough to suggest any plan or strategy to improve it along with medication (DGHS 2017a; WHO 2018). However, the Global Report on Tuberculosis did mention that In the late 1800s, cause-of-death data from national vital registration systems show that TB was one of the leading causes of death in some European countries. With social and economic development – such as improvements in incomes, housing and nutrition – numbers of TB cases and deaths started to decline in western Europe, North America and some other parts of the world around the turn of the 20th century, albeit slowly (1–2% per year) (WHO 2018).

There was recognition of the fact that the living condition of individuals has been considered responsible for the prevalence and spread of tuberculosis. It was noted that early modelling exercises show that increased coverage of care both in public and private sector will result in a decline by roughly half the TB incidence in the country over a decade. Activities to address determinants of tuberculosis such as urbanization, housing, malnutrition, and interventions such as active case finding in the high-risk population are expected to further reduce the incidence (DGHS 2017a). The Indian government, though, has rolled out later monthly monetary benefit to those who are enrolled for treatment of tuberculosis under RNTCP. The scholars have argued in details about the possibility of failure of monetary help in lieu of general improvement in nutrition. It is well known that ‘men, women and children in India continue to have an unacceptably high rate of undernutrition. In India undernutrition is either attributed to lack of access to sufficient calorie intake, food insecurity or to the lack of knowledge of proper diets, poor caring practice and poor sanitation (Ramachandran 2014). While the first need structural intervention, the second is largely the outcome of behavioural practices.

Gender and Stigmatization Tuberculosis is more than a disease in India. The social stigma attached to tuberculosis is as common as the DOTS centre especially for women and young girls. As discussed earlier in Chap. 5, parents of young girls were scared of the fact that if the disease is known in the neighbourhood, there would be a potential hindrance in the marriage of their daughters. However, boys were unaware of any potential issue in their married life due to them suffering from tuberculosis at a young age. The society is structured in a way which allows more stereotyped images and myths prevailing if they are against women. It is this structure that makes it difficult for women to show their willingness to receive treatment at the DOTS centre. Tuberculosis was not only a health problem for the affected people but also a kind of social problem. Children suffering from tuberculosis get differentially treated; common kids do not play with them, as their parents must be against it or have created the opinion that is

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against playing with infected kids. Till notification became mandatory in 2012, pulmonary tuberculosis was a secret disease in India as the diagnosis is kept secret by the interested parties. Indian family without fail keep women sick for a perpetually long duration without seeking treatment in a formal medical sense. This actually means that when women approach doctors, their cases had already advanced a long way, and simple treatments seem to be difficult. This often led people to form a firm and convinced opinion that tuberculosis would be endured and could not be cured. It is not unheard that there are deficiencies on the physicians’ side. They were not always very careful and compassionate to the patients especially women patients and often either misdiagnosed or prescribe the wrong line of treatment. The dreadful days of tuberculosis, i.e. before the pre-streptomycin era, might have been over. For Indian societies where tuberculosis not for the irrelevant reason has been known as ‘Raj yakshma’, it is still dreadful to breaking the news to the patients about tuberculosis. It still is a bolt from the blue. Not only the patient but their family members as well get heavily shocked after hearing the diagnosis, especially if it is for women members of the family. If the person is unmarried young girl, the fear is about marriage, if married young women the fear is about the not yet born ones. There is consistent fear about the prevalence of tuberculosis amongst women in the family. The obvious fear is also for those who are married and are mothers because the family has to rare the child away from the mother due to the fear of infection. Some of these fears are real; some remains unexplained. The fact remains that the family get stunned for they thought they are finished. There is an air of despair not only for the patient but also for the helpless family. The patient remained scared lest the news of their disease would be disclosed to the neighbour who might have discarded the affected patient and the family. Thus, the diagnosis of tuberculosis to the victims causes a psychological setback, causing not only physical illness but also anxiety and tension. Tuberculosis thus continues to be a horror to the people especially if they are diagnosed with MDR/XDR and. It thus causes an interruption in life – bodily and mentally and also socio-economically. While highlighting the gender issue related to tuberculosis, K. K. Gupta (2014:7) in the 75th year celebration of Tuberculosis Association of India wrote, Tuberculosis continues to be a social stigma… This stigma is more for women as they are always considered inferior and weak in the society...Women always have a fear of divorce or neglect as many men leave their wives just because of TB. In an interview, a woman said that her husband had left her because he thought that the food cooked by her could infect him also. More and more cases of divorce have been seen in the community due to tuberculosis. The girls who are unmarried always have a fear of revealing the disease to others as it may affect her future. This stigma is further augmented by new strategy of TB treatment i.e. DOTS (Directly Observed Therapy, Short Course). The DOTS strategy has done tremendous improvement in decreasing the incidence of therapy failure and mortality. But still people, especially women, think that they can’t go to a health centre for the medication on alternative day as it will affect their daily work and privacy

As discussed earlier, DOTS are beneficial in economic term, as one get medicine for free, however there are other costs involved in accessing this treatment regimen.

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Women and girls face social vulnerability, the men face loss of wage for the duration he visits the DOTS centre for medication.

Tuberculosis as Medical Mirage The United Nations’ General Assembly on October 3, 2018, accepted tuberculosis as one of the top 10 causes of death. It recognized that, World Health Organization declared tuberculosis a global emergency 25 years ago, it is still among the top 10 causes of death worldwide, and that it is a critical challenge in all regions and countries and disproportionately affects developing countries, where 99 per cent of tuberculosis-associated deaths occur, and furthermore recognize that the epidemic is exacerbated by the rise of multidrug-resistant tuberculosis and the heavy burden of tuberculosis, HIV and AIDS, and other co-morbidities such as diabetes, that one-quarter of the world’s people are infected with the bacterium that causes the disease, and that millions of people ill with tuberculosis are missing out on quality care each year, including on access to affordable diagnostic tests and treatment, especially in developing countries.

It is clear that 99% of deaths from tuberculosis occurs in developing countries, but if we consider that cost of treating MDR and XDR tuberculosis, the global burden of tuberculosis is on rising and the bacillus systematically becomes stronger to fight. Reuben Granich in Lancet (2018) considered recent UN meetings as “déjà vu all over again. WHO (1996) stated that drug resistance tuberculosis is too expensive to treat in poor countries. It detracts attention and resources from treating drug-­ susceptible cases. India did hold this view in their initial phase of RNTCP and aggressively pushed for DOTS, thinking discontinuation of medication is the prime reason for developing drug-resistant tuberculosis. Faith in directly observed treatment short course (DOTS) slowly eroded, as MDR and XDR were reported from patients who have completed the prescribed regimen under RNTCP. Further, leaving people with multidrug-resistant tuberculosis untreated was increasingly recognized as being both unethical and a bad tuberculosis control strategy (Granich 2018). The slight increase (1.4%) in MDR treatment rate since 2008 is too slow to cheer about, especially when we notice growing cases of XDR and TDR along with possible ineffectiveness looming large for the new drug. It is remarkable that this disease has posed a threat to public health since the 1800s, yet therapeutic advancements have been either futile or slow. In this race to combat a disease that knows no boundaries, whether physical or class boundary, it is necessary to have a conceptual and clear understanding of the disease, its social epidemiology, its spread and silent nature to effectively control it (Fogel 2015). In this context, it is important to engage meaningfully with the challenges of inequality if the agenda of ‘End Tuberculosis by 2030’ is to become a reality and not a ‘mirage’. Inequality not only allows some people to contain the bacillus but also allows the unhindered spread of disease across societies.

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Ecology, Society and Politics The explanations for such a change come from multiple sources including medical intervention and improvement in nutritional intake for the vulnerable group. The social vulnerability often is derived from ecological and physical vulnerabilities which are located in the lack of access to resources and lack of physical, financial and social capital. These multiple layers of vulnerability have changed the ecology of tuberculosis in society. For the apt explanation of changing ecology of tuberculosis, it is imperative to consider ecology as a political dynamic system rather than a given deterministic geographic entity. Geography matters and it matters more when analysed as an open system which is dynamic and is associated with local, regional and global socio-economic and political actions of individuals, groups, institutional and sovereign nation-state. Ecology when considered in this way can be called ‘political ecology’ which examines the politics—in the broadest sense of the word—of the environment (Choudhary 2014). It also often referred to as ecological politics. In this sense of ecology, it examines the historical role of economic systems, science, language and discourse, ideology, gender, property systems, social movements and resistance and the everyday politics of the community and the household in shaping human relationships with nature. The advent of treatment trajectories, the vaccination drive and the politics of BCG vaccination, the success and failure of such initiatives, the linking of DOTS with address proofs, and so on have had an impact on the shaping and reshaping of the ecology of tuberculosis in India. Political ecology approach to medicine and disease suggests that considerations of power, class and politics can be incorporated easily into the ecological framework so that they can be subsumed under the broader category of culture and society (Mayer 1996). Turshen (1984) proposed that “political ecology ... gives central importance to human agency in the transformation of the complex, interacting web that characterizes the environment”. Some kind of disease ecology—either a biological or an environmental or a correct conception i.e. of political ecology; has been a prerequisite of any kind of planning exercise, as without knowing the cause it is not possible to offer a solution to minimize or mitigate it. The cause of disease is as much social and political as much bacteriological and bio-medical. The absence, presence or persistence of certain kind of treatment regimen is also socially and politically determined, though may look like they are apolitical and purely based on scientific findings and limitations. Way back in 1938, Varier-Jones while discussing environmental factors in care and aftercare argued that new views about the environment are to be considered. He argued that, “It is so often taken for granted that the term ‘environment’ refers only the physical or material surroundings of the tuberculous and to nothing else, that it may not be out of place to begin by examining the other factors which make up (1) the ideal environment of those suffering from tuberculosis and (2) the environment which is supposed to act as an auxiliary factor in producing the disease.” (Health 1938)

The fact remained that despite available evidences, social and political environment remained the most neglected arena of treatment, though these factors shape

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and determine the quality of care for the patient. The process of leaving out migrants from DOTs system, prevailing unhygienic working conditions at the DOTs centre are apt examples of required political will and desirable intervention to ensure better results toward the goal of ‘End TB campaign’.

Looking Ahead of the Mirage! The world in the twenty-first century is claimed to be a better place for larger humanity with more power to people especially to the marginalized and poor. The truth about the claim is beyond the purview of measurable capabilities of current academia for two specific reasons: the scale of the problem and the absence of reliable data across geographies. Evidences of misery and affluence are propagated and questioned with known and unknown political and philosophical reasons. What is certain and can be considered beyond these evidences and counterfactuals is the uncertainty about respective claims about the current world order. Health and care in the current world ought to be the outcome of existing multi-dimensional ecological relations and dynamic production relations. Definition of health has changed with changing paradigms in which we live. The transformed relations whether human-human or human-ecological have contributed in reshaping of the environment and environmental politics which shape the disease ecology and healthcare system for a particular society or for different societies across geographies. Tuberculosis is not an exception to this, as the epidemiology of the disease and the treatment regimen along with available therapeutic and diagnostic systems are shaped by the local, national and global political economic regimes. For example, when Government of India announced cash payment of 500 rupees to tuberculosis patients for ensuring nutritional intake to cope with medication; it allows us to believe that there is a clear agreement with earlier neglected ‘academic’ argument that nutrition is the best medicine against tuberculosis. Also, this announcement accepts the prevailing undernutrition across population which otherwise get ignored as ‘mere criticism’ of the Government. However, the enthusiasm is still missing in addressing the question of undernutrition and malnutrition of children or even recognizing or ascertaining the extent of severe and acute malnourished children in the country. In my earlier writing in Economic and Political Weekly (2014), I argued about two simultaneously existing paradigms, which are divergent. The dominant paradigm considers disease or illness as an outcome of cessation of a corresponding normal function of the body, while the other though lesser accredited paradigm considers health to be adaptability. Adaptability brings in a cultural context to the medical context and takes ‘care’ beyond mere biological reductionism. Biological reductionism also known as instrumentalism or atomization widens the gap between the patients, the physician and their environments and conception of care gets limited to the efficacy of the pills. It is not true that there is an absence of alternative thinking in the field of health and medicine. After a gap of several decades, the

Looking Ahead of the Mirage!

155

concept of ‘whole person’, which objects to the reduction of human beings from ‘molar’ to ‘molecular’ identity retuned to forefront owing to the failure of singular therapeutic thinking. The practice of victim blaming was equally questioned and scholars tried finding answers in structural realities than in individual behaviour. It is pertinent to argue that one cannot be blamed for the failure of treatment if he or she has no share in decision making about such treatment trajectory. The varying capabilities of individuals and groups in determining the nature of the environment and their relative capabilities to negotiate with such environment make ‘ecology’ political. This conception once applied to the ecology of disease incorporates social epidemiology, which ascertains disease prevalence and treatment trajectories. The choice of patients is always limited often with their individual capital or due to available technology. The selection or the changes in the therapeutic have never been in the control of patients. It is always external to the individual agency. This is what I argue that the political understanding of ecology or to say the political ecology approach is needed to understand the ecology of tuberculosis in India (Choudhary 2014). Three basic concerns: ‘solidarity’, ‘autonomy’ and ‘responsibility’ are the cornerstones of political ecology, though these depend on the larger political economy of the society. This is the reason that these three conceptions have divergent connotations in a specific region, specific community and specific context, because there are multiple factors which determine the socio-political structures in which individual household’s economy exists. It is important to take into account the historical role of economic systems, science, language and discourse, ideology, gender, property systems, social movements and resistance as they shape everyday politics of the community. One has to take in to account the nature of everyday politics of household in shaping human relationships with nature that determine the occurrence of disease, treatment-seeking behaviour and coping mechanism for a particular society. This is more relevant when we address the disease which takes a time span of at least 6 months to recover. It is unwise to think that a patient suffering from tuberculosis will not exercise their autonomy in living life. It would therefore be better to inculcate the autonomy concerns in the use of patient’s perception of coping methods and the treatment regimen. Once there is acceptance of the application of autonomy and solidarity in conception and treatment of tuberculosis, one can expect that patients will take responsibility about themselves and also about the treatment that they have decided to be part of. There is a need to accept the role of these factors in shaping the map of tuberculosis in India. The application of some of these conceptions can be articulated as Political Ecology of Disease (PED) which determines disease in a particular locality and society and expects to provide a better explanation for the prevailing situation including success or failure of therapeutic interventions. In treating a patient these three (solidarity, autonomy and responsibility) are important and have to be considered. Patients are to be taken as the key component that needs attention and care. Society and family members usually avoid or neglect the TB patients in the current scenario because of prevailing taboo. The time has come when they need more social and emotional support from their family members, community and larger medical fraternity.

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Having autonomy of the patient would not only ensure their share of responsibility but also expand the possibility of having better solidarity.

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Index

A Akhtar, R., 26 Amrith, S., 14, 103, 124 Andersen, A., 120 Army, 35, 37, 38, 41, 88, 95 Arnold, D., 2 B Bacille Calmette Guerin (BCG), 21, 91, 100–104, 108, 143, 148, 153 Banerji, D., 120 Barret, F.A., 26 Benjamin, V., 46, 92, 100 Bhore Committee, 45, 46 Bhowali, 80 Bovine, 9, 35, 83, 102 Brimnes, N., 21, 101, 107 British Congress, 12, 30, 37, 77, 83, 85 Burden of disease, 1 Burma, 37, 40, 41 C Cantonments, 11, 14, 29, 36–41, 78, 87 Castes, 14–21, 37, 38, 54, 120, 122–124, 139 Challenges, 53, 96, 143, 144, 146–149, 152 Chemotherapy, 5, 67, 85, 86, 91, 92, 94, 95, 99, 104, 105, 108, 126, 143, 145, 149 Choudhary, B.K, 145, 149, 155 Climate, 6–9, 13, 21, 34, 75, 80, 81, 88 Colonization, 27–30 Consumption, 2–4, 9, 12, 28, 32–34, 76, 83, 88

Consumptive, 1–3, 13, 37, 76, 77, 79, 80, 84 Conwell, 31 Coping, 127–132, 134, 155 Crombie, 9, 12, 21, 29, 31, 34, 37–40, 74, 76, 81 Cummins, S.L., 4, 11, 21, 32, 33, 35, 39, 75, 83 Curative, 22, 93, 99, 103 D Danial, 22 Dharampore, 14, 80, 84, 88 Diagnostics, 22, 97–99, 103, 107–109, 143–145, 152, 154 Directly observed therapy short course (DOTS), 30, 53, 91, 94–98, 103, 104, 117, 120, 126, 143–146, 149–154 Directorate General of Health Services (DGHS), 1, 45, 47, 96, 103, 105, 107, 147, 148, 150 Disease history, 125–127, 137 Dubos, R., 5, 13, 22, 72, 76, 79 Dubos, J., 5, 13, 22, 72, 76, 79 E Ecological regions, 47, 53–55, 59–66, 115, 117, 118, 120, 121, 133 Ecologies, 6, 22, 25–27, 30, 41, 54, 59–68, 102, 105, 138–139, 153–155 Education, 14–18, 20, 85, 88, 102, 103, 106, 120, 122–124, 128, 139 Epidemiology, 27, 35, 54, 102, 104, 154

© Springer Nature Switzerland AG 2021 B. K. Choudhary, Ecology of Tuberculosis in India, Global Perspectives on Health Geography, https://doi.org/10.1007/978-3-030-64034-7

159

Index

160 F Families, 25, 30, 41, 47, 53, 54, 59, 79, 104, 105, 114, 122, 125, 129, 133, 135–140, 149, 151, 155 Family support, 137–138 Farmer, P., 22 File, B.L., 128, 134, 139 Fogel, N., 149, 152 G Gender, 129, 143, 150–153, 155 Geographies, 10, 25–27, 36–41, 45–68, 91, 153, 154 Germ theory, 5, 67, 72, 76, 77 Granich, R., 152 Gurkhas, 35, 37–39, 46 H Harrison, M., 2 Healing, 113–114, 129, 130 Hippocrates, 2, 3, 6, 13, 26, 67 I Indian Council of Medical Research (ICMR), 46, 103, 104, 108, 146 Industrialization, 10–12, 35 Inequalities, 23, 26, 66, 143, 149–150, 152 Institute of Medicine, 147, 148 Isolation, 10, 13, 54, 78–79, 82, 83, 86, 93 J Jails, 11, 20, 21, 29, 36–40, 75, 82, 83, 87, 88 L Lankaster, A., 31–34, 38, 75, 80, 83 Learmonth, A., 26 Learmonth, A.T.A., 26 Lilienfeld, A.M., 26 LokSabha, 48 M Mckeown, T., 22, 86 MDR/XDR, 151 Meade, M.S., 26, 133 Meaning of illness, 133–136 Medical mirage, 143–156

Medication, 73, 94, 98–100, 130, 132, 140, 143–146, 150–152, 154 Mirage, 152, 154–156 MOHFW, 45 Morbidity, 14, 16, 17, 25, 26, 30, 31, 36, 38, 45–48, 53–55, 59, 64–66, 87, 91, 124, 133, 145 Mortality, 1, 11, 25, 26, 31, 34–37, 39, 40, 45–51, 53, 84, 87, 96, 97, 107, 124, 145, 146, 151 Muthu, A.C., 13, 32, 72, 76–78 N Narratives, 72, 113–140 National Family Health Survey (NFHS), 14, 15, 17, 18, 20, 21, 25, 47, 53–54, 58, 62, 64, 65, 67, 115–118, 120, 122, 123 National Sample Survey Organisation (NSSO), 25 National Tuberculosis Institute (NTI), 103, 104 Nemesis, 22–23 Nutrition, 4, 22, 30, 53, 73, 77, 78, 86, 87, 92, 93, 137, 143, 149–150, 154 O Occupation, 15, 17, 27 P Pati, B., 2 Pederson, D., 27 Phitsis, 2–4 Planning Commission, 93, 95 Political ecology, 27, 133, 134, 145, 153, 155 Politics, 71, 138–139, 153–155 Port Blair, 20, 21, 29, 36, 37 Poverty, 10, 19, 21, 22, 27, 57, 59, 72, 74, 75, 77, 102, 104, 107, 119, 124, 149 Prevalence, 1, 2, 7, 8, 10–21, 25–27, 29–40, 45–48, 53–67, 72, 74, 75, 77, 92, 94, 97, 104, 107, 146, 147, 149–151, 155 Prevention, 22, 30, 37, 74, 77, 79, 82, 86, 87, 92, 102–104, 106 Preventive, 13, 22, 81–87, 93, 102–103, 106, 108, 109, 124 Prisons, 36–41, 78, 88

Index Public health, 1, 2, 6, 9, 28, 30, 46, 57, 66, 71, 76, 78, 81–88, 92–94, 102, 103, 119, 120, 145, 146, 149, 152 R Raj Rog, 3 Regions, 4, 7, 8, 10, 13, 15–21, 25, 30, 32–34, 40–42, 46, 52–55, 58–67, 79–81, 87, 96, 105, 116–120, 122–124, 146, 152, 155 Religions, 14–21, 33, 38, 54, 120, 122–124 Resurgence, 126, 132, 136, 145–149 Revised National Tuberculosis Control Programme (RNTCP), 30, 51, 55, 94–99, 104, 105, 107, 108, 143–150, 152 Rush, B., 76 S Sanatoriums, 6, 8, 11, 13–14, 30, 41, 72, 73, 80, 81, 84, 85, 88, 101, 104–106, 108 Schedule caste, 16, 19, 120, 124, 139 Schedule tribe (ST), 15, 18–20, 122, 123 Simeons, A.T.W., 80, 85, 88 Smoking, 15–21, 73, 122 Social epidemiology, 26, 102, 152, 155 Societies, 5, 6, 21, 26–28, 48, 52–55, 72, 76, 80, 84, 86, 87, 106, 107, 109, 113–115, 129, 133–136, 138, 139, 145, 149–155 Sprawson, C.A., 1, 21, 32, 35 Sputum microscopy, 95, 98, 99, 105, 145 Standard of living (SLI), 14–16, 18, 21, 54, 59, 88, 92, 93, 115, 116, 120, 122, 124, 139 Stigma, 54, 150, 151 Stigmatization, 150–152 Streptomyces, 85

161 T Therapeutics, 13, 28, 81, 82, 85, 97, 152, 154, 155 Treatment, 1, 4, 6–8, 11–14, 16, 21, 29–31, 34, 45, 53, 67, 71, 73–75, 78–83, 86, 88, 91–100, 103–109, 113–120, 124–133, 136, 138–140, 143–155 Treatment seeking behaviour, 124, 140, 155 Tuberculosis, 1–23, 25–42, 45–68, 71–88, 91–109, 113–115, 117–120, 124–128, 130–140, 143–156 Tuberculosis Association of India (TAI), 105–107, 151 Tuberculosis Research Centre (TRC), 93, 94, 103–105, 108 Turshen, M., 153 U Ukil, A.C., 35, 91, 98, 99, 102, 106 Urbanization, 10–12, 35, 150 W Walter, P., 1, 3, 8, 10, 22, 23 Watson, T., 76 Watts, S., 27 Wealth index, 14, 19, 21, 54, 115, 118, 119, 121, 123 World Health Organization (WHO), 4–6, 9, 13, 16, 18, 19, 22, 26, 27, 29–31, 33, 35, 39, 53, 73–78, 80–82, 84–86, 92–97, 101–103, 105, 106, 113–119, 125–128, 130–133, 135, 136, 138, 139, 144–152 Y Yakshma, 2–4, 151