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- Convenors:
-
Ian Harper
(University of Edinburgh)
Helen Macdonald (University of Cape Town)
- Location:
- Appleton Tower, Lecture Theatre 1
- Start time:
- 22 June, 2014 at
Time zone: Europe/London
- Session slots:
- 3
Short Abstract:
How are culture, wealth and infectious diseases interlinked? This panel will explore these issues from case studies around attempts to control tuberculosis.
Long Abstract:
Enlightenment reason, with its consequent mechanisation and urbanisation led to the flourishing of tuberculosis - consumption - which while predominantly affecting the poor, impacted everyone. The condition energised and animated the poetic and Romantic sensibilities, and became the exemplar of the artistic death. With the advent of effective treatments and anti-tuberculous drugs, these poetic images are hard to imagine today, but in many parts of the world the disease still impacts most heavily on the poor, marginal, and the disenfranchised. In this panel we seek papers that move beyond the simple linking of social inequality and poverty to infectious disease. To what extent do or can attempts to control tuberculosis address the issues of underlying poverty around which the disease flourishes? How has the focus on drug treatments overshadowed other ways of addressing the control of the disease and what are the implications of this? What role does anthropology have in thinking about the relations between culture and economy with regards to tuberculosis, and how might these insights be important for policy and practice in the control of the disease?
Accepted papers:
Session 1Paper short abstract:
This paper, based on ethnographic research with nurses and nursing students in the Eastern Highlands of Papua New Guinea, examines how local instantiations of TB prevention and education programs reflect middle- and working-class health workers' ambivalence about cross-class kinship.
Paper long abstract:
Papua New Guinea has one of the highest incidence rates of tuberculosis in the Asia-Pacific region, including multi-drug resistant tuberculosis. This paper, based on ethnographic research with nurses and nursing students in the Eastern Highlands of Papua New Guinea, examines how TB prevention and education programs reflect middle- and working-class health workers' ambivalence about cross-class kinship. Supposedly class-neutral prevention messages are reshaped in practice in ways that highlight the dangers of contact, commensality, and intimate sharing between the country's tiny "educated" minority and the rural majority. In a context of rapidly growing social inequality, TB education programs pathologize kinship practices that are socially positive, healthy, and adaptive in most contexts. In trying to promote middle-class, "Christian" nuclear family structures and what Charles Briggs has called "sanitary citizenship," TB education programs have to use existing social relations and stereotypes as a basis for comparison. As a result, they wind up targeting forms of kinship and relatedness that are essential to the social and material survival of the country's majority.
Paper short abstract:
This paper traces attempts to innovate TB diagnostics from global to local levels. It will contrast the production of evidence on the global pipeline and on feasibility for public TB control in India with local diagnostic practices in homes, communities, clinics, laboratories and hospitals in India.
Paper long abstract:
New diagnostics that can detect tuberculosis (TB) at the point-of-care are urgently needed. After decades of neglect the search for new diagnostics has received new global attention, actors and resources. As a result, pipelines are filled and the WHO has endorsed several new diagnostic tests, some of which have been heralded to revolutionize TB control, promising to overcome diagnostic delay and loss of patients from testing and treatment pathways. Yet, laboratory capacities are often too weak, the new tests too costly and/or dependent on sophisticated equipment or additional manpower. What is more, it is unclear how to design tests that fit into complicated local diagnostic eco-systems where a diversity of actors, materials, understandings, interests and relations are at play. Drawing on fieldwork in India and at international conferences, this paper traces attempts to innovate TB diagnostics from global to local levels. To which extent do these attempts address the underlying issues of poverty on which TB strives? How do these efforts relate to other attempts of controlling TB (treatment, prevention)? What are implications for the role of anthropologists/science and technology studies scholars in these innovation processes? I will examine the production of evidence on the global diagnostic pipeline and on feasibility of new diagnostics for public TB control in India, and contrast this with local diagnostic practices in homes, communities, clinics, laboratories and hospitals. The results reveal an urgent need to improve underlying processes of innovation and an important role for ethnographic studies on how diagnostics are made to work.
Paper short abstract:
As a result of social and medical "advances" since the 1940’s, TB is no longer considered a major infectious scourge in Western Europe, having been envisioned as a disease without a future until recently. I will show how this vision shapes the medical cultures of TB treatment and control in the present.
Paper long abstract:
As a result of social and medical « advances » in the middle part of the last century, Tuberculosis (TB) is no longer considered a major infectious scourge in France or Germany. But while in these countries TB has been relegated to the margins of political and public health concern, elsewhere over the last two decades the disease has continued to present significant new challenges to global health. In my paper, I will argue that tuberculosis has been envisioned for a long time as a disease without a future in the North - a vision that until today shapes the medical cultures of TB treatment and control on a global scale. Actualising old public health practices rather than finding new approaches and perpetuating a magic-bullet imaginary of disease control rather than questioning the limits of phramaceuticalisation, the contemporary medical cultures of tuberculosis control thereby remain caught in a highly modernist framework of the « fight » against this disease. In practice though, innovation occurs and new apparatuses are created in experimental public health settings, apparatuses which nevertheless face old contradictions where attempts of inclusion collide with politics of exclusion. Situated ethics of intervention emerge, where non-intervention is as much part of the practices as preventive and curative actions. The arguments of my paper are based on multi-sited ethnographic research on TB control in France and Germany, realised between 2005 and 2010.
Paper short abstract:
Based on newspaper epidemiology and multilevel TB worker ethnography, the paper highlights limitations of proposed biosafety measures of RNTCP in safeguarding its workers assigned to control TB in Mumbai. It argues for attention on embedded determinants of health of these insecurely employed workers.
Paper long abstract:
Based on newspaper epidemiology and multi-level TB worker ethnography, this paper aims at understanding the limitation of the Revised National Tuberculosis Control Programme (RNTCP) in safeguarding its health workers assigned to control tuberculosis in Mumbai. While newspaper stories in general are offered as a 'case by case' basis, the paper attempts to unravel the challenging discourse of embedded determinants of health which applies as much to these health workers as to the poor urban patients they serve. Megapolis of Mumbai represents Indian cities with its huge disparities in economic development and in the quality and quantity of healthcare. Drawing on case studies of healthcare workers infected with TB, from facilities that are sufficiently representative to account for variances in epidemiology, economic development and facility resources, the paper argues that immediate planning on part of the RNTCP to assist in infection control in institutional setting, where it is often encountered and treated, may go some distance in controlling tuberculosis amongst healthcare workers. However any measures aiming to combat the transmission of TB should take into account the health service system as a whole, whether it's a health institution or out-reach locales and workers. Further biosafety measures alone will not suffice to treat and eliminate tuberculosis even among healthcare workers without addressing systemic issues like contractual or temporary nature of job, nutritional problem(not just quantity but also quality), along with addictions and psychological and emotional stress that health workers face today in their increasingly inadequate and alienating form of insecure occupation.
Paper short abstract:
This paper explores the role played by a research organisation facilitating healthcare for TB in South Africa during a clinical trial. Its aim is to contribute to our understanding of the relationships between research ethics, epistemology and healthcare provision in the developing world.
Paper long abstract:
Since the 1980s there has been a substantial increase in the volume of biomedical research being conducted on vulnerable people and populations, particularly clinical trials to determine the safety and efficacy of pharmaceuticals. While the potential for exploitation has been well documented, a number of anthropologists have observed that clinical research organisations can become important actors in local therapeutic landscapes, making significant and easily overlooked contributions to the provision of healthcare among study populations. Based on ethnographic research with a South African research organisation that specialises in tuberculosis (TB) vaccines, this paper applies this perspective to the as yet deeply troubling issue of TB control in the developing world. I attempt to draw out the important role that the organisation played during a clinical trial facilitating healthcare for childhood TB - a role conferred upon the organisation by the trial's ethical regulations, and made possible by its long-standing relationships with local healthcare facilities. Paying particular attention to the dynamics between the trial's ethical and epistemological commitments, I will suggest that clinical research has much potential to make localised contributions to the control of TB in high-burden regions. However, in order for this potential to be fully realised, formal ethics structures must become more sensitive to the immersion of clinical trials in the very fields of power and inequality that make TB and other such diseases a continuing burden on the world's most poor and neglected.
Paper short abstract:
The modalities of funding TB control programmes has changed in the last decade. Focusing on the Global Fund (GFATM) in Nepal, this paper explores the impact of this on programmatic performance, and assesses the issues around this particular political economy.
Paper long abstract:
Since 2002 there has been a large increase in funding for tuberculosis control in low and middle income countries from the financial disbursement mechanism, the Global Fund (GFATM). Galvanising resources from high income countries, philanthropic trusts like the Gates Foundation, and large multi-nationals, the Fund then disperses this to countries on the basis of their own identified needs. Based in an economic logic that the control of disease impacts positively on the economy - through allowing those suffering from the disease to get back to work, for example - this has come to dominance over the last decade, and now provides the majority of funds for tuberculosis programmes worldwide. Drawing on fieldwork in Nepal this paper will explore the implications of this modality of funding on programmatic performance and health systems development. How has the logic of the fund impacted on disease control in practice? It looks at how target and performance based mechanisms impacts on the activities undertaken by organisations involved in the control of TB. We will explore the effects of a piecemeal and fragmented approach to planning and funding. However, while the Fund has increased overall funding for the disease itself, this has been at the expense of broader health systems strengthening, and does little to address the social determinants of the disease (much of which are related to poverty). Thus, the effects of this particular political economy of disease control will be addressed, and the impact - intended and otherwise - of the GFATM will be presented.
Paper short abstract:
We show the broader causality of tuberculosis in Rio de Janeiro, from macro processes to people's bodies. We argue for a focus on the collective level of reality and specifically on life conditions as a way to provide better care and prevention for tuberculosis in Rio de Janeiro, Brazil.
Paper long abstract:
Despite the historical characterization of tuberculosis as related to poverty, only very recently did WHO explicitly affirm the role of social dimensions in its incidence and the need to address it beyond drug taking. Several studies question simplistic links between poverty and tuberculosis, and its highly unequal incidence demands that we fully address its complexity. And while we cannot immediately change macro processes, it has become evident that actions on the individual level are also insufficient to cure, and to prevent disease transmission, activation and bacterial resistance.
In this paper we look at social causality of multidrug-resistant tuberculosis in Rio de Janeiro, a city with a very high incidence of this form of tuberculosis. We draw on stories of patients and on sensitive theoretical frameworks seeing the disease trajectory through different levels of reality. Tuberculosis appears connected to Rio's integration in current capitalism, implying heavy population concentration, and very precarious and mobility-demanding life conditions for great part of urban population, among other dimensions (Sabroza, 2006; Castellanos, 2004). This is an ideal context for tuberculosis development, and a very hard one to care for people's health. We focus on life conditions, which situate in the collective level, a third level of reality between the individual and the structural. This level allows us to understand the mediations between macro processes and people's bodies, which will enable us to work on disease prevention, and, simultaneously, to identify and overcome obstacles to care in the services and in peoples' lives.
Paper short abstract:
In the 1950s, India’s first randomized controlled trial (RCT) established that the antibiotic cure for TB was equally effective at home and in the sanatorium. I argue that the new evidentiary power of the RCT undermined both sanatorium treatment and the relevance of poverty for TB treatment.
Paper long abstract:
In the history of tuberculosis, the mid-20th century witnessed a therapeutic shift. The development of new drugs and new forms of evidential procedure decisively undermined the sanatorium and its strictures. This quintessentially "social disease" no longer required social interventions, only biomedical ones.
In this paper, I will talk about the 1950s' Madras Study, the first randomized controlled trial in India. This study produced decisive proof that the antibiotic cure was equally effective at home and in the sanatorium. Drawing upon the words of a surviving member of the research team, I will attempt to reconstruct the conditions of this study.
India had long suffered from a dearth of public sanatorium beds, which government officials understood to be too expensive. The Madras Study was an effort to establish a more cost-effective alternative. Drugs promised to democratize tuberculosis treatment, bringing the cure to the masses. Study subjects drawn from Madras City were described as poor, underemployed, undernourished, and living in squalid circumstances. These negative conditions threatened to undermine patient adherence to the treatment regimen, but also bolstered the credibility of the study results. By proving that drug therapy worked even among the poor, poverty could be removed from the equation. I argue that the new evidentiary power of the randomized controlled trial not only showed the efficacy of the cure, but also established poverty as a non-factor in the treatment of tuberculosis. I suggest that sanatorium treatment and the relevance of poverty for tuberculosis both faded as part of the same process.
Paper short abstract:
Drawing on primary research conducted with a Chhattisgarhi NGO at a rural clinic in central India, this paper examines the socially constructed dichotomous relationship between biomedicine and local interpretation of tuberculosis in relation to facts presented as numerical representations.
Paper long abstract:
This paper examines models of bio-markers of tuberculosis (TB) beyond the simple linking of tuberculosis with social inequality and poverty, to ask, for example, what role 'numbers' plays in revealing symptoms, as well as the misrecognition of symptoms, and to identify factors that impede certain kinds of 'marking.' Drawing on primary research conducted with a Chhattisgarhi NGO at a rural clinic in central India, this paper examines the socially constructed dichotomous relationship between biomedicine and local interpretation of TB in relation to facts presented as numerical representations. In clinic spaces particular attention was paid to the counselling sessions, and the knowledge that doctors chose to record and those they imparted as TB 'facts'. In contrast where local knowledge was lacking biomedical underpinnings, a formidable yet gendered knowledge base is present in conceptions of TB. This paper argues that the local and the biomedical actually conflate and resemble an agglomerate of local understandings of disease focused particularly around notions of 'numbers' that both acknowledge and at times neglect the political economy.
Paper short abstract:
The paper will examine how the Jomoro Health District, in the Western Region of Ghana, faced tuberculosis enhancing pharmacological treatments through a new health strategy aimed to integrate orthodox and traditional medicine.
Paper long abstract:
The paper will examine a specific case-study observing how the Jomoro Health District, in the Nzema area - Western Region of Ghana - faced tuberculosis. In Ghana, still today this disease is very common in rural and marginal areas, even if the Ministry of Health tried to promote curative and preventive treatments. At the beginning of 2000s, in the Jomoro District most of the patients left biomedical treatments of tuberculosis putting themselves into the hands of traditional healers. So, in 2006, the Jomoro Health District Directorate organized meetings among health personnel and traditional healers of the area. This action inaugurated a new health strategy of intervention and control aiming to enhance national programs, not so efficacious in the Nzema area. Why were pharmacological treatments left by local people? Why did not medical projects had positive results in a marginal territory characterized by a relevant medical pluralism? The paper will aim to answer these questions; to examine the reasons why Jomoro Health District promoted a new health strategy, different from national tuberculosis programs and alternative to the national health political economy; to analyze the subjects discussed during the meetings among district staff and traditional healers; to think about the results of this tentative to support pharmacological treatments with a strategy aimed to integrate different medical traditions. Finally, this case-study leads to discuss how anthropology could be useful not only to have in thinking about the relations between culture and economy with regards to tuberculosis, but above all to propose new health projects to be adjusted to different local contexts.
Paper short abstract:
In this presentation, I examine “the price of free,” the difference between the intended goals of China’s national tuberculosis control program and patient realities, with a focus on economic costs.
Paper long abstract:
In this presentation, I explore the unintended gaps between China's national tuberculosis control program and patient realities, with a focus on economic costs. Since the early 1990s, China has scaled-up subsidized tuberculosis control programs, and in 2005, China reached 100% national DOTS coverage, through the support of foreign stakeholders. Such efforts have led to great gains in basic tuberculosis control, towards the achievement of the 2015 Millennium Development Goals (MDGs). The success of these programs has rested in part on a "double free" approach, through which patients receive both diagnostic and treatment services at no charge. Throughout this period, China has also undergone widespread reforms, which have served to fundamentally transform the economic opportunities of everyday citizens. In this context, patient realities differ significantly from the goals of the national tuberculosis control program. Drawing on research conducted in China with patients and tuberculosis public health experts, I examine "the price of free," that is, the difference between the intended goals of national policy and the realities of implementation. In doing so, I explore the tensions created by a national social model, which seeks to equitably distribute services and reduce economic barriers, and neoliberal capitalist aspirations, which reward risk and flexibility.