Urban slum dwellers—especially in emerging-economy countries—are often poor, live in squalor, and suffer unnecessarily from disease, disability, premature death, and reduced life expectancy. Yet living in a city can and should be healthy. Slum Health exposes how and why slums can be unhealthy; reveals that not all slums are equal in terms of the hazards and health issues faced by residents; and suggests how slum dwellers, scientists, and social movements can come together to make slum life safer, more just, and healthier. Editors Jason Corburn and Lee Riley argue that valuing both new biologic and “street” science—professional and lay knowledge—is crucial for improving the well-being of the millions of urban poor living in slums.
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About the Author
Jason Corburn is Associate Professor at the University of California, Berkeley, jointly appointed in the Department of City and Regional Planning and the School of Public Health, and Director of the Center for Global Healthy Cities.Lee Riley is Professor of Epidemiology and Infectious Diseases and Chair of the Division of Infectious Diseases and Vaccinology at the School of Public Health, University of California, Berkeley.
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From the Cell to the Street
By Jason Corburn, Lee Riley
UNIVERSITY OF CALIFORNIA PRESSCopyright © 2016 The Regents of the University of California
All rights reserved.
From the Cell to the Street
Coproducing Slum Health
JASON CORBURN AND LEE RILEY
The first comprehensive report on the demographic, spatial, economic, legal, and social indicators of informal human settlements defined by the United Nations Expert Group as "slums" was published by UN-Habitat in 2003. According to the UN, slums are human settlements that have the following characteristics: (1) inadequate access to safe water, (2) inadequate access to sanitation and other infrastructure, (3) poor structural quality of housing, (4) overcrowding, and (5) insecure residential status. Yet, as we emphasize throughout this chapter, no single definition adequately captures the characteristics of "informal settlements" that contribute to poor health or well-being. For instance, the UN also defines informal settlements as unplanned squatter areas that lack street grids and basic infrastructure, with makeshift shacks erected on unsanctioned subdivisions of land. As we suggest in this chapter, to engage with slum health means to explore not just how physical deprivations in slums might influence disease and death, but also how economic poverty, social inequalities, and political disenfranchisement act to stymie well-being or support resilience. In short, we are interested in the combinations of knowledge and "expertise" needed to coproduce slum health. We expand on these ideas throughout this chapter.
In this chapter, we introduce the concept of coproducing slum health and how coproduction demands knowledge creation that integrates the laboratory and the street — or biological and community-based expertise. We first explore the importance of moving "from the cell to the street" for slum health using the example of rheumatic heart disease in the favelas of Brazil. We suggest that this disease, like so many others that are more prevalent in urban poor populations than nonpoor populations and communities, demands a multidisciplinary response and intervention strategy. This new polycentric knowledge-for-action process is a central feature of what we call coproducing slum health.
The chapter also suggests that moving toward slum health requires an understanding of how contemporary health issues may have come to be in urban slums. Thus, we offer a brief review of how medicine and public health "treated" urban slums from the late nineteenth through the end of the twentieth century. We suggest that public health justifications were often used to segregate the urban poor from other groups and often combined with racist views of slums and slum dwellers that blamed the poor for disease and "dirty" living conditions. We also suggest that this legacy remains with us today and is something slum health advocates must acknowledge and take on in their work. Unfortunately, most urban development in the twenty-first century, as proposed by governments, the private sector, and large international organizations, does not seem intent on addressing the health and living-condition needs of slum dwellers. Thus, we recognize that coproduction must always include the participation and expertise of slum dwellers and their civil society organizations. In this way, slum health ought to be understood as one important component of the "right to the city," whereby services, land, and the decision-making processes of the state act to serve, not sever, the well-being of the urban poor. We conclude the chapter with some principles of slum health that act to guide research and action.
FROM THE CELL TO THE STREET
City living can be beneficial for human health, since urban areas generally offer greater economic and educational opportunities, medical services, political and gender rights, affordable housing, and cultural, political, and religious expression. This holds true in both rich and poor cities of the global North and global South. Yet not everyone in cities can take advantage of these socially produced resources, and the poor and socially marginalized often experience health inequities, or differences in access to health-promoting resources that are unnecessary, avoidable, and unfair. As UN-Habitat and the World Health Organization (WHO) stated in their 2010 report Hidden Cities: Unmasking and Overcoming Health Inequities in Urban Settings:
Health inequities are the result of the circumstances in which people grow, live, work and age, and the health systems they can access, which in turn are shaped by broader political, social and economic forces. They are not distributed randomly, but rather show a consistent pattern across the population, often by socioeconomic status or geographical location. No city — large or small, rich or poor, east or west, north or south — has been shown to be immune to the problem of health inequity.
Slum health is one way to begin to chip away at urban health inequities, such as those between urban, rural, and slum dweller populations.
As used in this book, "slum health" refers to the continual improvement of well-being, living conditions, access to life-affirming services and opportunities, and the reduction of risk, disability, danger, and disease for the urban poor, especially but not limited to the global South. Ensuring the conditions in which the urban poor and slum dwellers can be healthy requires the sharing of existing, and creation of new, knowledge across social and natural science disciplines, not just in medicine or public health. The actors in slum health must include governments, scientists, nongovernmental organizations, international institutions, the private sector, community-based organizations, and most important, slum dwellers and the urban poor themselves. Our view of slum health is consistent with the 1986 Ottawa Charter for health promotion, which emphasized that health is a "resource for everyday life, not the objective of living" and "is a positive concept emphasizing social and personal resources, as well as physical capacities." Slum health aims to address the forces that contribute to the distribution of disease and well-being across populations and places, and the drivers of current and changing patterns of inequalities in well-being across population groups and places. By emphasizing distribution as distinct from causation, slum health investigates how social, political, and economic forces — from discrimination to economic policies and neighborhood environments — get "into our bodies" to shape which groups get sick, die earlier, and suffer unnecessarily.
Moving toward slum health demands deliberate action-research into the context-specific factors that might be making particular slum dwellers unhealthy and more susceptible to disease, disability, and death, and requires that this work must privilege partnerships, participation, and power-sharing between and among scientists, slum dwellers, and state-level decision makers. There is no one-size-fits-all approach. We call this collaborative approach coproduction. In the coproduction of slum health, science is understood as dependent on the natural world, as well as historical events, social practices, material resources, and institutions that contribute to the construction, dissemination, and use of scientific knowledge. Political decision making, in the coproduction framework, does not take "scientific knowledge" as a given, but seeks to reveal how science is conducted, communicated, and used. The coproduction model problematizes knowledge and notions of expertise, challenging hard distinctions between expert and lay ways of knowing. Acting to improve slum health, under the coproduction approach, requires negotiation among the always partial and plural positions of professionals and laypeople. The coproduction model also destabilizes the dominant view in science policy making that scientific findings can be uncritically accepted as "fact" or "truth." The destabilizing stories and emphasis on the need for "negotiating expertise" suggest that a deliberative science is necessary for the coproduction of slum health knowledge for action.
Before going into greater detail on coproduction in practice, we offer an example below from our own research on the importance of linking "the cell to the street" and why a coproduction framework is crucial for slum health.
Rheumatic Heart Disease
Rheumatic heart disease (RHD) is a chronic heart condition triggered by multiple episodes of pharyngitis (sore throat) caused by the bacterium Streptococcus pyogenes or Group A streptococcus (GAS). It is an autoimmune disease in which the host immune response mounted against the bacterium causes collateral damage to the heart valves. RHD is a paradigm of a disease of urban slums. Pankaj Mishra once commented, "Migrants from impoverished hinterlands, living without security, public health, and, often, clean water in the shantytowns of Sao Paulo, Lagos, Karachi, Dhaka, and Jakarta, have as much in common with each other as 'People Like Us' — the global class of businessmen, journalists, academics, and anti-terrorism experts — do among themselves." In studying pharyngitis caused by GAS in children living in slum versus nonslum communities in Salvador, Brazil, Tartof, and colleagues (chapter 8) describe differences in the diversity of genotypes of GAS isolated in these children. The study found that GAS strains that infect children of slums are more diverse and resemble the genotypes and level of diversity of strains found in low-income countries in Africa and the Pacific region, while strains that infect children attending the private clinic have genotypes and diversity that resemble those reported from high-income Western countries. These children live in communities located within a few kilometers of each other, yet the GAS strains isolated from children residing in the slums versus nonslums were, respectively, more similar to those that occur in low-income and high-income countries in other continents of the world rather than to each other in the same city.
This difference in strain diversity may be contributing to the higher prevalence of RHD in the slums of Salvador, and may itself result from social disparity unique to the slum community. Addressing the social disparity issues only, however, may not be sufficient to correct the problem of RHD that results directly from the biological disparity revealed through rigorous molecular epidemiological studies.
Often, discussions related to social determinants of disease do not address the biological factors that actually cause the disease. We discuss RHD as an example of a disease of urban slums to demonstrate why biological determinants of disease must be included as part of a discourse on social determinants of disease to understand how social and biological disparity interacts to affect disease occurrence and distribution in different communities.
Sore throat, of course, is an infection that everyone experiences many times during childhood and adult life. GAS pharyngitis is one of the most common infectious diseases among children everywhere in the world, including developed countries. While most pharyngitis episodes are caused by viruses, those caused by GAS require antibiotic treatment. Without treatment, the infection, especially after multiple such episodes, can trigger immunologically mediated complications including rheumatic fever (RF) and RHD. RHD, which follows repeated bouts of RF, is characterized by progressive damage to the heart valves, leading to complications such as congestive heart failure (CHF), stroke, and even death. The damaged heart must be surgically repaired or replaced with artificial valves. RHD is rarely diagnosed today in developed countries, but the disease is responsible for 12 to 65 percent of hospitalizations for cardiovascular disease in developing countries, and is the leading cause of valvular damage requiring surgery in China. The mean age of those with RHD in Brazil who develop complications such as CHF and mitral valve regurgitation was 9-12 years in the early 2000s. These valvular damages that require surgical repair may have to undergo repeated repairs later in life. Fifteen years ago, it was estimated that the societal cost just of RF for Brazil was over $51 million a year. A large proportion of RF and RHD in the world occur among children residing in informal settlements. Thus, a simple sore throat, when it occurs in slums, affects these communities in a substantially disparate manner.
The motivation behind the study of GAS pharyngitis in Salvador was to address one hypothesis about RHD occurrence: that GAS strain differences contribute to RHD pathogenesis. In a follow-up study, the same group of investigators attempted to assess the burden of RHD in Salvador. An echocardiographic survey of the entire population would have been the ideal way to make such an estimate, but it would have been impractical and tremendously costly. Instead, the investigators reviewed medical charts of patients who underwent cardiac valvular surgical procedures performed by cardiac surgeons in all the hospitals of Salvador between 2002 and 2005. Of 491 valvular heart surgery patients identified, RHD accounted for 60 percent of the surgeries. The mean age of those with RHD was 37 years (25–48), compared to 69 (63–77) for degenerative valve disease and 49 (38–68) for endocarditis. The surgery was paid for by the public sector in 71, 32, and 18 percent of cases, respectively. Thus, a large proportion of the RHD patients who underwent valvular surgery were young adults from low-income communities in Salvador. Since RHD requiring surgery is only the "tip of the iceberg," this observation suggests that a large number of people in Salvador live with RHD, most of whom likely reside in slum communities. Clearly, RHD is a disease that disproportionately affects low-income residents of Salvador.
Social and Environmental Determinants of Disease
We recognize that structural, economic, legal, and environmental differences between urban slums and nonslums contribute to many differences in health outcomes in these communities. It should be stressed, however, that these disparities do not cause disease but do explain their distribution across populations and places. Bacteria, viruses, parasites, fungi, and immunological responses to these infectious agents cause diseases. Mutations that occur in human genes contribute to other diseases. Disease is a biological process resulting from disruption of a homeostatic state of a healthy body. Resiliency is the ability of the human body to maintain an equilibrium state despite its exposures to external stresses. One of the major gaps in our knowledge regarding social determinants of disease is this biological process — often a "black box" — that lies in the pathway between social disparity and disease outcome (fig. 1.1). What are the biological and social mechanisms through which poverty, social disparity, and injustice influence RHD, or for that matter, tuberculosis (TB), HIV-AIDS, diarrheal diseases, acute respiratory infections, leptospirosis, and many other infectious diseases, as well as complications of chronic noncommunicable diseases common in urban slums? Tartof et al. addressed the "black box" standing in the way between living in slum communities and pharyngitis and found disparity at the bacterial cell level among GAS strains circulating in Salvador. This biological disparity may influence who develops RHD and who does not. How does this happen? How do bacteria "decide" which children to infect with which strain?
Excerpted from Slum Health by Jason Corburn, Lee Riley. Copyright © 2016 The Regents of the University of California. Excerpted by permission of UNIVERSITY OF CALIFORNIA PRESS.
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Table of Contents
List of Illustrations ix
List of Tables xi
Prelude: Memoirs of a Kenya Slum Dweller xiii
Introduction Jason Corburn Lee Riley 1
Part 1 Slum Health: Framing Research, Practice, and Policy 9
1 From the Cell to the Street: Coproducing Slum Health Jason Corburn Lee Riley 11
2 Slum Health: Research to Action Alon Unger Lee Riley 38
3 Frameworks for Slum Health Equity Jason Corburn 51
4 Urban Poverty: An Urgent Public Health Issue Susan Mercado Kirsten Havemann Mojgan Sami Hiroshi Ueda 70
5 Urban Informal Settlement Upgrading and Health Equity Jason Corburn Alice Sverdlik 80
Part 2 From the Cell to the Street: Slum Health in Brazil 101
6 Favela Health in Pau da Lima, Salvador, Brazil Alon Unger Albert Ko Guillermo Douglass-Jaime 105
7 Impact of Environment and Social Gradient on Leptospira Infection in Urban Slums Renato B. Reis Guilherme S. Ribeiro Ridalva D.M. Felzemburgh Francisco S. Santana Sharif Mobr Astrid X. T. O. Melendez Adriano Queiroz Andréia C. Santos Romy R. Ravines Wagner S. Tassinari Marília S. Carualho Mitermayer G. Reis Albert I. Ko 118
8 Factors Associated with Group A Streptococcus emm Type Diversification in a Large Urban Setting in Brazil: A Cross-Sectional Study Sara Y. Tartof Joice N. Reis Aurelia N. Andrade Regina T. Ramos Mitermayer G. Reis Lee W. Riley 134
Part 3 Urban Upgrading and Health in Nairobi, Kenya 149
9 Coproducing Slum Health in Nairobi, Kenya Jason Corburn Jack Makau 153
10 Sanitation and Women's Health in Nairobi's Slums Jason Corburn Irene Karanja 189
11 Microsavings and Well-Being in a Nairobi Informal Settlement Jason Corburn Jane Wairutu Joseph Kimani Benson Osumba Heena Shah 208
Part 4 Understanding Slum Health in Urban India 229
12 Health Disparities in Urban India Siddbarth Agarwal 233
13 Improved Health Outcomes in Urban Slums through Infrastructure Upgrading Neel M. Butala Michael J. Van Rooyen Ronak Bhailal Patel 258
Part 5 Knowledge Gaps and Future Considerations 273
14 Toward Slum Health Equity: Research, Action, and Training Jason Corburn Lee Riley 279
List of Contributors 297