Understanding Tuberculosis and its Control

Anthropological and Ethnographic Approaches

Helen Macdonald, Ian Harper, Helen Macdonald, Ian Harper

• Publisher: Routledge
• Year: 2019
• ISBN:
  9780429853722
• Edition: 1
• Topic: Social Sciences
• Subtopic: Anthropology
• Index: Social Sciences

Over the last two decades, attempts to control the problem of tuberculosis have become increasingly more complex, as countries adopt and adapt to evolving global TB strategies. Significant funding has also increased apace, diagnostic possibilities have evolved, and greater attention is being paid to developing broader health systems. Against this background, this book examines tuberculosis control through an anthropological lens. Drawing on ethnographic case studies from China, India, Nepal, South Africa, Romania, Brazil, Ghana and France, the volume considers: the relationship between global and national policies and their unintended effects; the emergence and impact of introducing new diagnostics; the reliance on and use of statistical numbers for representing tuberculosis, and the politics of this; the impact of the disease on health workers, as well as patients; the rise of drug-resistant forms; and issues of attempted control. Together, the examples showcase the value of an anthropological understanding to demonstrate the broader bio-political and social dimensions of tuberculosis and attempts to deal with it.

1

Introduction

Persistent pathogen

Helen Macdonald, Paul H. Mason and Ian Harper

A student of Helen’s¹ was working in a Biosafety Level 3 Laboratory, a controlled environment in which scientists work with infectious pathogens (Shain, 2017). In her field report were fragments of a conversation with an immunologist:

This is a bug that is very good at … this is a survivor. It’s one of the big survivors. It’s been with us for seven thousand years we think. That’s the best evidence that we have at the moment. That means this is not a wimpy bug and it’s not something that, you know, it has to be a pretty conniving agent to survive that.

The bug in question was M. tuberculosis, which acts slowly, progressively and can be deadly, affecting any part of a human or animal body, although mainly targeting the lungs. The response above points to the biological and discursive agency of the microbe: Its ability to survive for millennia shapes it into a conniving non-wimpy agent. This microbe somehow manages to survive the harsh environment of the human macrophage; it endures being frozen, manipulated in laboratories and is strong, resilient, and rapidly adaptive in the face of changing medicinal environments. This immunologist’s analysis of M. tuberculosis calls attention to the fact that tuberculosis (TB) disease control in the first quarter of the 21st century is at an important crossroads.

TB has occupied global public health attention since the World Health Organization (WHO) declared it a global emergency in 1993. The 2016 report from WHO indicates that the ‘TB epidemic is larger than previously estimated’, despite TB incidence and the number of TB deaths declining globally. The latest WHO report states:

TB is the ninth leading cause of death worldwide and the leading cause from a single infectious agent, ranking above HIV/AIDS. In 2016, there were an estimated 1.3 million TB deaths among HIV negative people (down from 1.7 million in 2000) and an additional 374,000 deaths among HIV-positive people … An estimated 10.4 million people (90% adults; 65% male; 10% people living with HIV) fell ill with TB in 2016 (i.e., were incident cases). Most of the estimated number of incident cases in 2016 occurred in the WHO South-East Asia Region (45%), the WHO African Region (25%) and the WHO Western Pacific Region (17%) … The top five countries, with 56% of estimated cases, were (in descending order) India, Indonesia, China, the Philippines and Pakistan.

(WHO, 2017, p. 21)

This steady decline of drug-susceptible TB has been held up by some within the National TB Control Programs (NTPs) and their respective ministries of health as a sign that TB is under control in their countries. However, and despite reports of success, the crisis of multiple drug-resistant strains (MDR) TB detection and treatment continues unabated. In 2016, there were an estimated 490,000 new cases of MDR-TB and an additional 110,000 people with rifampicin-resistant (RR) TB (WHO, 2017). Of this estimated combined total of 600,000 cases, China, India and the Russian Federation accounted for almost half (47%) of cases. Globally, 153,119 cases of MDR/RR-TB were notified in 2016 and 129,689 enrolled in treatment (WHO, 2017, p. 63). In terms of the latest (2014 cohort) treatment outcomes, there was a 54 per cent treatment success rate for MDR-TB and 30 per cent for extensively drug-resistant (XDR) TB, compared with 83 per cent for TB (WHO, 2017, p. 63). A conniving and non-wimpy bug aside—not dissimilar to the sociologists Bowker and Starr (2000) describing TB as a complex and illusive ‘moving target’—how did we arrive at the ‘epidemic’ or ‘crises’ described through the shocking numbers expressed above?

Biomedical history becomes global history

Prior to Robert Koch’s announcement of the discovery of M. tuberculosis as the ‘causative agent of TB’ in 1882, tuberculosis disease was known as consumption, the disease of wasting. The identification of M. tuberculosis altered what it meant to suffer from consumption and catalysed an epistemological shift towards a singular aetiological model of disease causality thereby informing subsequent treatment protocols. Succeeding diagnostic, vaccine and antibiotic developments fostered the grobalization (see Ritzer, 2003) of this biomedical paradigm. BCG (Bacille Calmette-Guérin) vaccination programs were implemented globally (despite conflicting and unresolved reports about their efficacy) and the availability of antibiotics bolstered collective resolve around singular and reductionist approaches to disease control (McMillen, 2015). The peak of TB care and prevention, up until the advent of antimicrobials, had been sanatoria erected in exotic locations that promoted models of personal hygiene that became standards of personal care in wider society (Mooney, 2013).

The modern era of TB treatment and control was heralded by the discovery of streptomycin in 1944 (Pringle, 2012), followed by the development of isoniazid and pyrazinamide in 1952. With the rapid succession of anti-TB drugs, resistance to streptomycin monotherapy (one drug treatment), which would jeopardize the success of antimicrobial therapy, could be avoided. It was quickly demonstrated that the problem of drug resistance could be overcome with a combination of two or three drugs. Rifampicin, developed in the 1970s, allowed for fully ambulatory treatments (streptomycin has to be administered by injection), hastened recovery times, and significantly reduced the number of tuberculosis cases until the 1980s. Eventually, the availability of oral antimicrobials firmly reinstated the home as the primary site of care for all TB patients. Antimicrobials became available at a time when the incidence and mortality of tuberculosis had already begun to decline in high-income countries due to an improved standard of living, particularly through better nutrition (Holloway et al., 2014).

The end of the sanatorium era of TB treatment began with the results of the landmark Madras study of domiciliary versus sanatorium treatment (Tuberculosis Chemotherapy Centre, Madras, 1959). The study concluded that ‘the results of domiciliary chemotherapy … approach sufficiently closely the results of sanatorium treatment to suggest that it is appropriate to treat the patients at home’. Consequently, sanatoria, located as they were in the countryside, were rebranded (to become ski resorts, conference centres and holiday retreats). Where once sanatoria had brought consumptives together as communities (Armus, 2011), pharmaceuticals now allowed doctors to treat TB patients as individuals.

The Madras study was pivotal for another reason in that it established Randomised Controlled Trials centred on pharmaceutical products as the gold standard of evidence production in global health interventions (Venkat, 2016). Public-health policy regarding treatment of TB gained primacy as did microbiological responses to therapy that in turn overshadowed other ways of addressing disease control. While the outcome of the Madras study provided increased access to TB treatment services for those who were unable to access sanatorium-based care, it did the disservice of separating treatment programmes from the political economy in which they were embedded. Venkat argued that the logic of validating antimicrobial efficacy was an attempt to move from ‘the unknowable temporality of the cure to the predictable future of the cure rate … Yet the enduring promise of the cure, like all promises, is fragile because of the twinned possibilities of resistance and relapse’ (cited in Dirlikov, 2014). Hopes of eradicating the disease sank in the 1980s where those countries with the lowest gross national products witnessed a resurgence of TB (or at least an increased visibility of the size of the problem) and a rise of drug-resistant strains. In the three decades following the discovery of pyrazinamide, as Styblo (1982) observed, the number of TB cases doubled in the developing world. In wealthier countries the steady drop in TB incidence levelled off in the mid-1980s and then began to increase—much of the increase blamed on migration and linked to the rise of TB/HIV co infection. While economic growth in high-income countries preceding the advent of antimicrobials correlated to a decrease in TB incidence, economic growth in low-income countries following the availability of antimicrobials correlated to an increase in rates of multidrug resistant TB (Mason et al., 2017).

As a ‘neglected’ and ‘re-emergent’ disease, TB was declared a ‘global health emergency’ by WHO Director General Hiroshi Nakajima in 1993 (Lawn & Zumla, 2011; Nakajima, 1993). However, that same year the impetus for addressing infectious diseases in the developing world was undermined by the annual World Development Report by the World Bank. Increasing concerns about the prevalence of non-communicable ‘lifestyle’ diseases served to dilute the impact of calls for greater global effort towards addressing older infectious conditions that entrench social and economic disadvantage amongst the ‘bottom billion’ people in the world. This re-ordering of priorities has been reinforced by the introduction of the Disability Adjusted Life Year (DALY) metric, which combines mortality and morbidity figures into a single unit of analysis (Kenny, 2015). The impacts of each disease can be compared as a function of the number of deaths as well as the diminished productivity and strain on healthcare systems due to chronic disabling conditions. An internationally standardized measure, one DALY is equivalent to one lost year of healthy life, either from premature death or disability (with the definition of premature based on mean life expectancy). In spite of differing cultural understandings of disability, numerical indicators used for cost–benefit analyses of potential health interventions are often treated as universal and objective.

This generic mode of quantifying disease burden masks the diverse variability in social, economic and political disturbances driving disease incidence. Favouring people living within the context in which it was developed, the DALY metric pushes degenerative conditions, once considered to be diseases of affluence, firmly up the global health agenda. Without appearing to put a dollar value on individual human lives, the DALY metric universalizes the prioritization of economically valuable producers and consumers as the subjects of neo-liberal health governance. Thus, the importance of addressing longstanding infectious diseases like TB can easily become superseded by the chronic illnesses prevalent in high-income countries with a longer average life expectancy. Furthermore, the loss of additional life years after the mean life expectancy is not factored as a loss in the DALY, which prioritizes diseases that afflict younger populations. In the case of TB, the DALY is biased towards attending to the TB epidemic in Africa, where it afflicts predominantly younger populations as opposed to Asia where it afflicts predominantly older populations. McMillen finds that the infiltration of the DALY and the corresponding orientation towards cost-effectiveness in discussions of global health offer further indication of a prevailing neo-liberal attitude such that the value of any given intervention was assessed using economic metrics to determine what gets targeted with what measures (2015, p. 188).

Despite challenges in regaining global attention, the antituberculous industry has mushroomed with many organizations working on a global scale. The technical strategy for DOTS (directly observed treatment, short-course) was developed by Karel Styblo during the 1970s and 1980s (Styblo, 1982). Styblo sought to refine a complex system of treatment checks and balances that provided high cure rates for TB at a low cost. During the early 1990s, WHO and the World Bank with Styblo designed and piloted a successful TB-control project for China in the hope to be able to expand it globally. By 1995, a more concise ‘Framework for Effective Tuberculosis Control’ was branded DOTS and promoted by key actors in WHO and the World Bank as the solution to TB control (Ogden et al., 2003, p. 180). The head of New York City’s Bureau of TB Control, Tom Frieden—who later worked with the WHO in India assisting with the Revised National Tuberculosis Control Programme—described TB control as ‘basically a management problem’ (Nowak, 1995, p. 1763). Focusing on five main elements and nine key operations DOTS included: (1) diagnosis by sputum smear microscopy; (2) standardized supervised treatment; (3) uninterrupted drug supply; and (4) recording and reporting system. For World TB Day 1997, WHO held a news conference in Berlin during which Director General Hiroshi Nakajima heralded DOTS as the ‘biggest health breakthrough of the decade’ (WHO, 1997). There was a steady global uptake of DOTS TB control services over the subsequent decades.

Across the globe there was a long history of medical care and some social measures aimed at reducing tuberculosis. In the 1990s many nations began developing national programmes for tuberculosis control (NTPs) on the recommendation of the WHO, which specifically sought to implement the direct observation of treatment and to reinforce the other DOTS components. For many of these nations, the introduction of a reductionist disease-control strategy embedded in cost-effective models of global health happened alongside changing free-market economies. With limited domestic resources to run TB healthcare, NTPs in many nations worked with an internationally standardized TB-control strategy that carried political traction and foreign economic support. From 2002 the Global Fund, a new international financial mechanism for resourcing HIV, TB and malaria programmes added much-needed external resources to national TB-control efforts and, in the TB component, resource distribution was closely aligned with this standardized strategy. An aetiological focus in biomedical research biases clinical researchers and epidemiologists to value certain forms of treatment, such as pharmaceuticals, over others, such as food-security issues, economic factors and living conditions, to name a few. This preoccupation leaves disease-control strategies incomplete which, in turn, has vast consequences when applied globally to populations worldwide. Nonetheless, the introduction of DOTS from 1995 to 2008 made cure available to 36 million people globally (Lönnroth et al., 2010).

However, in these high-burden countries, individualized pharmaceutical care is being mobilized through political support for decentralized public healthcare consolidated around infectious diseases (Biehl, 2008). The global penetration of neo-liberal ideology through nongovernmental and bilateral development organizations shifts health away from being a collective responsibility and towards being a private commodity (Keshavjee, 2014; McMillen, 2015). A singular focus on pharmaceutical products to treat TB is inadvertently part of the neo-liberal push towards responsibilization that produces the self as an enterprise in which to be invested. As such, TB control is a critical site for studying the commodification of health and the increasing dependence upon, and consumption of, pharmaceuticals, as well as for investigating patterns of social inclusion as Western medicine finds a foothold to become global medicine through internationally standardized treatments (Harper, 2014). By neglecting the multiple forms of exclusion and the social and political precarities that make TB prosper, but treating those sickened by the disease, the current global effort to control TB is ‘a symptomatic treatment of a social disease’ (Kehr, 2015, p. 7).

The anti-TB segment of the pharmaceutical industry is competitive, and new treatment regimens recommended by the WHO provide companies an opportunity to reposition themselves in the market (Ecks & Harper, 2013). The effects can be seen across the globe. Upstream forces behind anti-TB drug prescriptions in India (Ecks & Harper, 2013) or Nepal (Harper & Rawal, 2015), the medicalization of social welfare in hospitals, clinics and sanatoria throughout Romania (Stillo, 2015), and the twinned global TB-control strategies of standardization and neo-liberalization in post-Soviet Georgia (Koch, 2013) are all part of a global trend. The deterritorialization of the pharmaceutical model of TB treatment, and its reterritorialization in locations with poor public health infrastructure, are evidently problematic. Medical products might easily grobalize (see Ritzer, 2003)—that is the imposition of global and universal organizational forms across disparate locales—but the health services that make them effective do not easily glocalize (see Robertson, 1994).

Despite the globally falling TB incidence rate, this conniving and non-wimpy bug continues to impair productivity and negatively impact economic development. It continues to pose challenges such as increasingly drug-resistant strains, its symbiosis with other illnesses and social conditions such as HIV, diabetes, hunger, subs...