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Massive health disparities
Del Rio, 8-14, 20, Del Rio is Distinguished Professor of Medicine at Emory University School of Medicine and the executive associate dean for Emory at Grady. He is also professor of global health and epidemiology at the Rollins School of Public Health and co-director of the Emory Center for AIDS Research and co-primary investigator of the Emory Vaccine and Treatment Evaluation Unit, ContagionLive, COVID-19 and Its Disproportionate Impact on Racial and Ethnic Minorities in the United States, https://www.contagionlive.com/publications/contagion/2020/august/covid19-and-its-disproportionate-impact-on-racial-and-ethnic-minorities-in-the-united-states
What Do We Mean by Health Disparities? The term “health disparity” was first used in the United States around 1990. It was intended to denote that worse health existed among socially disadvantaged people and, in particular, members of certain racial and ethnic groups and those who were economically disadvantaged. Today, health disparities is a much broader term and refers to differences in health and health care among population groups. Disparities occur across many dimensions, including race, ethnicity, socioeconomic status, age, location, gender, disability status, and sexual orientation. Disparities in health results in some groups receiving less or lower-quality health care than others and experiencing poorer outcomes. Health disparities result in increased morbidity and mortality and unnecessary costs. Health inequalities among racial minorities in this country are pronounced, persistent and pervasive.1 Without doubt, some of these differences are rooted in health and social conditions that have existed for decades and that can be summarized as “structural racism.” Structural racism refers to the ways in which societies reinforce systems of housing, education, employment, earnings, benefits, credit, media, health care, and criminal justice that foster racial discrimination.2 Thus, it is important that we recognize that at the heart of most health disparities are concerns about social justice, and that without addressing policies and practices in housing, education, employment, health care, and criminal justice that foster racial discrimination, health disparities will never cease to exist Health Disparities in COVID-19 The coronavirus disease 2019 (COVID-19) pandemic has been characterized by enormous health disparities both in the United States and abroad. In the U.S., African Americans are contracting SARS-CoV-2 at higher rates, and they are more likely to die from COVID-19 than whites. Infection rates are more than 3-fold higher and death rates are 6-fold higher in predominantly black/African American counties compared with predominantly white counties.3 Hispanics/LatinX are also being disproportionately impacted. In California, LatinX represent 70% of all COVID-19 deaths in the group of people aged 18 to 49 years, despite making up just 43% of that population. Other historically marginalized communities, such as American Indians, are also experiencing some of the highest rates of COVID-19.4 Nationally, age-adjusted hospitalization rates for COVID-19 are approximately 5-times higher for American Indians, Alaska natives, and Blacks, and 4 times higher for LatinX persons, compared with non-Hispanic white persons (Figure). CDC data shows that LatinX people between the ages of 40 and 59 years have been infected at 5 times the rate of white individuals in this age category, but this difference is even more dramatic when looking at deaths of LatinX persons with COVID-19 who died, more than a quarter were younger than 60, although among white persons, only 6% were that young.6 Multigenerational households are also common among minority populations, resulting in an increased risk for older individuals living with grandchildren. These racial/ethnic disparities are not unique to the US. In the United Kingdom, Black and South Asian individuals are at higher risk of dying from COVID-19 compared with white persons after adjusting for other factors.7 There are many reasons that racial and ethnic minori- ties have been disproportionately affected by COVID-19, but social and economic disadvantages are likely significant contributors. A disproportionate number of minorities live in small apartments and houses in which it is difficult to isolate when sick; in addition, many are frontline service workers who don’t have the luxury of staying at home and teleworking. Poverty has long been recognized as a contributor to death and disease, but the striking differences in racial and ethnic impact of COVID-19 provide an opportunity to reaffirm the link between income and health. In the case of millions of the “working poor”—individuals who have a job that does not provide health benefits but make too much money to qualify for Medicaid—lack of access to health care is among the most serious challenges they face. However, health care accounts for some 10% to 20% of the determinants of health, while socioeconomic factors and factors related to the physical environment are estimated to account for up to 50% of the determinants of health.8 Furthermore, strong evidence linking income and health suggests that policies promoting economic equity may have broad health effects. Social vulnerability is a term that refers to the resilience of communities when confronted by external stresses on health such as a pandemic. CDC’s Social Vulnerability Index (SVI) uses 15 census track variables to help identify communities at greater risk.9 In an effort to quantify and better inform the relation- ship between community-level social disadvantage and incidence of COVID-19, investigators at Emory University examined the association of SVI scores with the case- fatality rate and incidence of COVID-19.10 Their data suggest that a higher SVI score is associated with a higher case-fatality rate, an association that strengthened after adjustment for age and for comorbidities. This association exists in more than 1 in 4 counties in the United States and suggests that these counties should be targeted by public policy interventions. The COVID-19 Health Equity Interactive Dashboard developed by the same group allows users to visualize the relationship between the virus’s health impact and social determinants of health at a county level.11 Health Equity Is the Road to Ending COVID-19 Health equity is the principle underlying the commitment to reduce and ultimately eliminate health disparities. It means striving for the highest possible standard of health for all people and giving special attention to the needs of those at greatest risk or who have poor health because of social conditions. A potential “silver lining” of COVID-19 is that it could be seen as an impetus and opportunity to develop strategies that would begin to finally eliminate inequalities in health in the United States, thus achieving health equity. The first step is to acknowledge that health disparities related to COVID-19 are not the fault of those who are experiencing them, but rather the consequence of social policies and systems that create and perpetuate inequalities. As Williams and Cooper state in a recent Journal of the American Medical Association editorial, this is an opportunity to develop a new kind of “herd immunity.” By improving current policies and implementing new ones, making the investments necessary to decrease social determinants of health among the poor and disenfranchised, we will all be better protected from future pandemics.12
Lack of a public health infrastructure leaves Black Americans vulnerable to disease
Danielle Parnass and Adam Schank, July 29, 2020, Washington Post, What Made U.S. Health Care So Vulnerable to Covid-19: QuickTake, https://www.washingtonpost.com/business/what-made-us-health-care-so-vulnerable-to-covid-19-quicktake/2020/07/29/2443ba3a-d159-11ea-826b-cc394d824e35_story.html
America’s patchwork system created confusion, muddling the response. Since prices are unregulated, concerns about out-of-pocket costs for coronavirus tests lingered even after federal officials assured Americans they’d pay nothing. The federal government also promised to pay the hospital bills of uninsured Covid-19 patients, and major insurers eventually pledged to waive out-of-pocket hospital expenses for their customers, but concerns about unexpected bills remained. The virus took a particularly harsh toll on Black Americans, who, as a result of income inequality and disparities in access to health care, are more likely to have underlying conditions such as diabetes, hypertension and lung disease. Some state governors bemoaned the lack of a coordinated federal response to challenges such as ensuring sufficient supplies of tests, ventilators and personal protective equipment for health-care workers, tasks that were left to underfunded statelevel public-health departments. The U.S. spent 17% of gross domestic product on health care in 2019, double the average of the well-to-do members of the Organization for Economic Cooperation and Development. But it allots only 3 cents out of every dollar to public health, the field devoted to protecting entire populations by, among other things, responding to infectious disease.
Black Americans are dying from COVID-19 at twice the rate of other racial groups
Clarence Graveley, August 4, 2020, American Journal of Human Biology, Systemic racism, chronic health inequities, and COVID ‐19: A syndemic in the making? (I am an anthropologist at the University of Florida with expertise in research methods, community-based participatory research, and critical biocultural approaches to the health consequences of social inequalities.), https://onlinelibrary.wiley.com/doi/full/10.1002/ajhb.23482
Soon, that stark reality became clear to all. By early April, evidence began to emerge in the United States—first in Milwaukee, then in Detroit, eventually everywhere data were disaggregated by race—that mortality from COVID‐19 was disproportionately affecting Black people and communities (Johnson & Buford, 2020). During the entire course of the pandemic so far, data compiled by the non‐profit APM Research Lab (2020) has shown that the crude death rate for Black Americans is more than double that for all other racialized groups. When adjusted for age, the risk of death from COVID‐19 is as much as nine times higher for African Americans than it is for whites (Bassett, Chen, & Krieger, 2020). This inequity—as appalling as it is—may still underestimate the problem, as data remain woefully incomplete. Despite calls for comprehensive, nationwide data on COVID‐19 cases and deaths by race and socioeconomic status, the U.S. federal government has no such system in place, and journalists and scholars have stepped in to collate disaggregated data by race from a patchwork of state health departments. The need for better data remains.
42-Systemic racism causing the spread of COVID-19
Clarence Graveley, August 4, 2020, American Journal of Human Biology, Systemic racism, chronic health inequities, and COVID ‐19: A syndemic in the making? (I am an anthropologist at the University of Florida with expertise in research methods, community-based participatory research, and critical biocultural approaches to the health consequences of social inequalities.), https://onlinelibrary.wiley.com/doi/full/10.1002/ajhb.23482
Figure 1 identifies systemic racism (Feagin, 2006) as a fundamental cause of racial inequities in disease concentration. This perspective sees the social patterning of hypertension, diabetes, and now COVID‐19 as culminating from a system of racial oppression that has developed and morphed over four centuries—from settler‐colonialism and chattel slavery to race‐based residential segregation and mass incarceration. Systemic racism constitutes a fundamental cause (Phelan & Link, 2015) in the sense that it shapes the risk of risk through multiple, interchangeable pathways (see also Laster Pirtle, 2020). Some of those pathways lead to increased risk of diabetes, some to hypertension, some to COVID‐19—and some to combinations of the three. For example, race‐based residential segregation, a result of deliberate social policy (Rothstein, 2017), has far‐reaching consequences for health. It shapes the social and spatial distribution of both risks and resources, including the quality of schools, employment opportunities, density and quality of housing, availability of healthy food, exposure to pollution, threat of police violence, and access to quality health care (Williams & Collins, 2001). These aspects of the social environment, in turn, have implications for cardiometabolic conditions through unequal nutritional status, inflammation, and physiological dysregulation (eg, Lei et al., 2018; Morenoff et al., 2007). Some of these pathways (eg, inflammation) may also increase susceptibility to COVID‐19, while other aspects of residential segregation may increase exposure, rather than susceptibility, to the novel coronavirus in the first place (eg, density of housing or inability to follow social‐distancing guidelines leading to higher viral load). Still other pathways have both COVID‐19 and cardiometabolic disease as endpoints. For example, air pollution increases the risk of hypertension and diabetes (Coogan et al., 2012) and has been proposed as a risk factor for COVID‐19 (Zhu, Xie, Huang, & Cao, 2020). The racialized structure of American labor entails differential exposure to COVID‐19 (Hawkins, 2020) and to occupational stressors related to hypertension (Cuevas, Williams, & Albert, 2017). Mass incarceration unjustly impacts Black people and communities, with consequences for both COVID‐19 and cardiometabolic disease. Incarcerated people face both greater exposure to SARS‐CoV‐2 (Akiyama, Spaulding, & Rich, 2020) and elevated risk of hypertension and heart disease (Wang et al., 2009), and nonincarcerated Black people living in neighborhoods with high rates of incarceration have higher rates of cardiometabolic disease, independent of individual‐ and neighborhood‐level factors like poverty and rates of crime (Topel et al., 2018). All population health frameworks draw attention to the social production of health inequities. The value added by a syndemic perspective is that it also highlights how biosocial interactions move in both directions. Not only do social inequities shape the risk of COVID‐19; COVID‐19 is also likely to exacerbate social inequities, further harming health. For example, devastating job losses during the pandemic have disproportionately affected Black Americans (Gould & Wilson, 2020), and the economic fallout from COVID‐19 has magnified racial inequities in income and housing (Greene & McCargo, 2020). Likewise, the online transition of K‐12 and university teaching threatens to widen racial inequities in educational opportunities, given that federal policies subsidize internet access in disproportionately white, rural contexts but not in cities where residents are disproportionately Black and other people of color (Siefer & Callahan, 2020). Further, in regions where COVID‐19 is concentrated, the strain on healthcare systems may compound pre‐existing inequities in access to care (Williams & Rucker, 2000). Already we see evidence of racial inequities in COVID‐19 treatment (Eligon & Burch, 2020), and we know that discrimination in healthcare settings adversely affects management of chronic conditions like diabetes (Peek, Wagner, Tang, Baker, & Chin, 2011). Note that each of these scenarios—unemployment, income, housing, education, health care—involve synergies between biological and social processes at the population level. They hint at how overlapping epidemics may not merely co‐occur but rather interact to make matters worse. Much of the media commentary has focused on how comorbidities like hypertension and diabetes increase the risk of COVID‐19 becoming deadly. Syndemic theory alerts us, in addition, to the possibility that the pandemic could intensify racial inequities in the social and economic conditions that increase risk for hypertension and diabetes to begin with, exacerbating the toll those diseases already take on Black people and communities. The possibility of such synergistic effects—over the short and long term—underscores the relevance of syndemic thinking.
Lack of access to insurance exacerbates social, economic, and environmental factors that create racial death gaps—the historical record proves the gap is not static, success stories can be replicated nationally.
Rust et al. 12. Professor of Family Medicine and Director of the National Center for Primary Care at Morehouse School of Medicine. 05/2012. “Paths to Success: Optimal and Equitable Health Outcomes for All.” Journal of Health Care for the Poor and Underserved, vol. 23, no. 2 Suppl, pp. 7–19.
***rounded 83,570 to 80,000 for readability reasons
U.S. racial-ethnic and socioeconomic health disparities are real, pervasive, and persistent, but they are not inevitable. Some communities demonstrate relative equality in health outcomes, even when poverty and social inequities persist. Geographic variation in disparities may serve as a natural experiment which shows critical elements and common pathways to success for communities which have moved toward greater health equity. Instead of getting stuck on what are the causes health of health disparities, we propose a very different question to guide our work—What has already been successful in decreasing health disparities in real-world communities, and how could we replicate and expand these patterns of success to a nationwide scale? Go to: The Problem In the year 2000, Black-White disparities accounted for over 83,570 [80,000] excess deaths each year. Black-White mortality rate-ratios have not changed significantly over the past half-century, despite dramatic improvements in civil rights and economic opportunity.1 The Black-White neonatal mortality rate increased from a 20th century low of 1.4 in 1946 to 1.7 in 1958, where it plateaued until increasing to 2.5 between 1971 and 1992. It has averaged 2.4 since then.2,3 To put this in human terms, eliminating the Black-White infant mortality gap nationwide could save a hundred African American babies every week. On other measures, disparities are more widely distributed. For example, Hispanic and Latino populations experience diabetes complications such as leg amputations and retinopathy at rates at least twice that of non-Hispanic Whites. American Indians and Native Alaskans have the highest death rates due to sudden infant death syndrome (SIDS), and the second highest rates of diabetes-related deaths.3,4 Disparities in the Asian population are often overlooked because of a lumping of various Asian communities into one artificial racial grouping. Asian Indians have higher odds of physical inactivity and diabetes than Whites, while Filipino individuals are more likely to have hypertension.5 Cervical cancer and hepatitis C rates also vary widely from one Asian group to another. Inequities also occur along socioeconomic lines.6 Lower socioeconomic status (both at the individual person and community levels) is associated with higher all-cause mortality and cause-specific mortality rates.7,8 The prevalence of multiple risk factors for heart disease and stroke is highest among people with the lowest household incomes (52.5%), and almost twice as high as the prevalence of those with the highest household income (28.8%).9 Individuals who are uninsured are substantially more likely to be hospitalized for a preventable condition,10,11 or to be diagnosed with a later-stage cancer.12,13 Regardless of income level, lack of health insurance is associated with decreased use of recommended health care services for cancer prevention, cardiovascular risk reduction, and diabetes management.14 There are also substantial disparities within disparities. For example, the strongest modifiable predictors of health care utilization for African-American persons in 1999 were whether or not individuals had health insurance and/or a usual source of care. These factors accounted for up to six-fold differences in utilization of doctor’s office visits and prescription medication.15 While socioeconomic inequalities contribute to racial/ethnic inequalities, they are not the sole cause. For example, there are persistent disparities in treatments offered and delivered to patients based on race and gender.16 Standardized clinical scenarios in a simulated video experiment demonstrated bias in cardiac interventions based solely on race and gender of the patient.17 Our studies in the Medicaid population have demonstrated racial and ethnic differences in rates of treatment for influenza, HIV-AIDS, depression, and the pain of labor and delivery, despite similar poverty levels and identical health insurance coverage.18–21 Even for college-educated African American women, birth-outcomes are significantly worse than among similar White women.22 Therefore, it is important to identify, monitor, and address both socioeconomic and racial/ethnic disparities simultaneously to achieve total health equity for the entire population. Go to: Reason for Hope Despite the persistence of disparities at a national level, more fine-grained analyses demonstrate that trends in disparities are not static. For example, Black-White mortality rate-ratios improved significantly for women from 1960–2000, but this was offset by a worsening of inequalities in health outcomes among men.1 The conscious exclusion of non-disabled men from Medicaid and social welfare programs, plus high rates of unemployment and incarceration, have had a devastating impact on the health status of African American men.23 In contrast, the combination of programs targeting women (especially those with dependent children) ranging from Medicaid to WIC to AFDC/TANF, combined with gains in employment and income levels for African American women relative to White women, all may have contributed to significantly decreased health disparities for women. Specifically from 1960 to 2000, Black-White mortality rate ratios decreased from 3.2 to 2.2 for women age 25 to 34 and from 2.5 to 1.6 for women ages 55–64. Disparities are not inevitable. Policies, programs, and other factors do matter, and can influence health equity both positively and negatively. Another notable but less well understood success in the elimination of disparities is reflected in alcohol-related mortality trends. From 1979 to 2007, these declined from age-adjusted Black:White mortality rate-ratios of 2.8 to 0.8 for adult women and 2.7 to 0.9 for adult men. Does this reflect more accurate recording of a potentially stigmatizing cause-of-death for Whites, or is it a true success story in the elimination of disparities? If so, how was equality achieved? There is also wide variation in the level of disparities from one local community to another, demonstrating that success is possible, and perhaps providing models for what such successful communities might look like. Some communities even show paradoxically good outcomes and relative health equity despite significant social inequities. In other words, there are community-level strategies that can mitigate the most harsh health effects of poverty and social inequality. In our Georgia Health Disparities report, we analyzed disparities in seven domains at the county level in each of Georgia’s 159 counties. Some counties showed no racial disparities in health outcomes at all. Although socioeconomic inequalities were predictive of health outcome disparities in two-thirds of Georgia’s counties, there were 28 counties in which broad measures of minority health outcomes were paradoxically good (minimal health disparities despite major social inequalities). Conversely, 23 counties had minority health outcomes that were worse than socioeconomic indicators would have predicted.24 Levine,25–27 Fry-Johnson,28 and Pisu29 have explored such variations in overall mortality and mortality from breast cancer, HIV-AIDS, and infant mortality. Four patterns of Black-White outcomes as measured by morta
lity rate ratios (MRRs) have been observed, including places with high Black and White mortality rates and low Black:White ratios (i.e., equally bad outcomes), low Black and White mortality rates with Black:White equality (optimal and equitable outcomes), high Black and low White mortality rates with high MRRs (high-disparity with bad outcomes disproportionately affecting Blacks), and low Black and high White mortality with MRRs under 1.0 (reverse disparity). Disparities in mortality are clearly not the same in every community. Interestingly, the successes reflected in low Black mortality rates have not been restricted to wealthier counties or those without socio-economic inequities, suggesting that some communities may have mitigated negative social determinants and may demonstrate key elements of more healthy, successful, or resilient, communities. These hypotheses are testable in mixed-methods research, which would combine quantitative analytic epidemiology with qualitative investigations of social, cultural, and contextual factors. Where communities have achieved success, we must ask, Why? Go to: Paths to Success for Overall U.S. Health What might be the components of achieving such success? We have previously published analyses demonstrating the essential components that have led to success in most of the major breakthroughs in U.S. health status, as measured by substantial reductions (more than 50%) in mortality rates within leading causes of death over the past 50 years.30 We were able to identify innovations that enabled these successes, and then to identify mechanisms of diffusing those innovations to achieve survival success. We now must find similar paths to success for achieving health equity. The triangulating on success model (research innovation spread through dual-channel diffusion of public health plus medical care) has both advantages and disadvantages. On the one hand, it explains America’s success for seven of nine leading causes of death that have seen a 50% mortality reduction in the past 50 years (Table 1). The model also reminds us that all three stakeholder groups—researchers, public health professionals, and medical practitioners—share a success story and have a common stake in improving health outcomes for the American people, but must increasingly work together in common purpose, in partnership rather than in parallel. On the other hand, many of these seven success-story categories of disease are the very conditions which have seen widening disparities, because life-saving innovations do not appear to diffuse equally through all segments of the population.31 Specifically, Phelan et al. have shown that disparities in mortality are greatest for those conditions we know most about treating and/or preventing.32 In general, advantaged segments of the population may adopt lifesaving innovations more quickly and more completely than disadvantaged communities. While social determinants provide a root cause explanation of health disparities, the cure is not always the inverse of the cause. The path out is not always the same as the path in. Identification of paradoxically successful (positive deviance communities) and replication of their protective resiliency factors, along with equitable diffusion of effective innovations, may be another path to success. Go to: Paths to Success for Eliminating U.S. Health Disparities Is there a path to success for communities currently afflicted with exceedingly disparate health outcomes? The Madison, Wisconsin (Dane County) experience exemplifies a community that achieved success in moving the needle from high disparity infant mortality rates to dramatically better Black health (IMR) outcomes, ultimately resulting in the complete elimination of the Black-White gap. According to the CDC’s Morbidity and Mortality Weekly Report, Wisconsin had the highest Black infant mortality rate in the nation (17.6 deaths per 1,000 live births), approximately three times the state rate for Whites in 2002–2004. However, in contrast to other states and other metro areas of Wisconsin, the Black infant mortality rate in Dane County dropped 67% (Fig. 1), from 19.4 per 1,000 live births in the years 1990–2001 to 6.4 per 1,000 in 2002–2007.33 These results must be viewed with cautious optimism at this time, as they represent a reduction of only about three infant deaths per year. Even so, the decrease in mortality is tied to two related trends affecting many more infants, e.g., a decrease in the occurrence of births of very low birthweight (VLBW) Black babies (less than or equal to 1500g) from 391 per 1000 live births to 154 per 1000 (61% decrease), and a decrease in the number of extremely preterm births (less than or equal to 28 weeks estimated gestational age) among Black or African American women from 2.8% to 1.1%. Some elements of the interventions that contribute to this success are known, but the full picture is not clear. The New York Times contrasted the experience of one young mother in Madison (Dane County) with her previous pregnancies while living in Racine, which still has one of the highest Black infant mortality rates in the country. This mother specifically mentions both home visits by county public health nurses and increased social support from her local church. Additional factors include a legal advocacy group assisting with housing and Medicaid issues, and a community health center with a robust cadre of nurse-midwives providing relational pre-natal care. Referrals to medical, dental, and mental health services are coordinated. Transportation and social work support are also provided, including assistance with education and employment. The county public health director says, “I think it’s a community effect. Pregnant women need to feel safe, cared for and valued.”34[p.A-20] The Dane County example highlights the need to coordinate public health, health care delivery, and social supports (both concrete services and relational support) to achieve optimal and equitable health outcomes. Somehow in Dane County the multi-dimensional interventions have reached critical mass and completely reversed the Black-White disparities, rather than incrementally or partially reducing them. In biologic ecosystems this would be called hysteresis, a tipping point of sorts when multidimensional changes combine to achieve a rapid reversal of alternative “steady-states.” Much research is needed to see if this reversal of disparities will be stable over time, and whether hysteresis is demonstrable in other communities—if so, it would define at least one path to achieving health equity. How do we learn from such success stories? Surveillance to identify paradoxically successful communities (health equity despite persistent social inequalities) must be followed by qualitative follow-up to ask the why and how questions. What worked? Nobel laureate Amartya Sen has shown in the Kerala India model that disparities are neither inevitable nor deterministically associated with poverty.35,36 One strategy for seeking wisdom from such positive outlier communities and applying it to less successful or resilient communities can be found in the Positive Deviance model, which has demonstrated impact on issues as diverse as education, nutrition, health, and child endangerment in more than fifty countries across six continents.37 There is likely no single magic bullet for eliminating m
ost health disparities. Different communities may require different interventions, but these interventions are typically multi-dimensional and focus on multiple levels from person to system to community. Research is also needed to see if results in one community are replicable in other high-disparity communities, and if so, whether the model will be scalable to a broad range of communities across the nation. Can we take such solutions to scale? Can we reduce disparities at a state or regional level? Childhood immunization rates have improved nationwide, but regional differences in disparity trends suggest that state-level and local implementation matters. For example, the Black-White immunization gap narrowed significantly in the Midwest region among non-poor children between 1998 and 2003, even as the gap widened in the Northeast region. Graphs of the disparity rates in these two regions literally crossed each other during that six-year period, with the Midwest Black-White rate ratio dropping over 75% from 13.9 to 2.5 even as the Northeast region saw a dramatic increase in Black-White disparities (0.5 to 15.5).38 Such large-scale success appears to require multi-level intervention addressing downstream, midstream and upstream levels of involvement of the individual, community, and policymakers, all at the same time. 39,40 Is such success scalable to a national level? Within the medical care arena, quality of care differences cited in the Institute of Medicine’s Unequal Treatment report16 persist, but are perhaps mitigated in settings which have consciously sought to improve care for the underserved. There is some evidence to suggest that practices proactively serving high-disparity segments of the population (e.g., community health centers and Veteran’s Health Administration sites) actually achieve lower disparities or near-equal care across racial strata of their patients, even though they both serve disproportionately low-income and minority (i.e., high-disparity) populations.41,42 Shi’s study of the 2003 National Health Care Disparities Report and the 2002 Community Health Center (CHC) User Survey found that patients of federally qualified health centers experienced fewer racial/ethnic and socioeconomic disparities in access and quality of care compared to patients of non-CHCs.43 In a separate study of the Veterans Administration Health System, McGuire et al. found that implementation of community-based primary care clinics decreased access disparities to VA services for homeless veterans with serious mental illness.44 Rehman found that the ethnic disparity in BP control between African Americans and Whites was approximately 40% less at VA than at non-VA health care sites.45 The American Heart Association’s Get–with-the-Guidelines program on treating coronary artery disease provides one example of how to transfer these lessons learned into the private sector or into the broader health care system. They report the elimination of treatment disparities in acute myocardial infarction, achieved by adopting critical paths and standardized processes of care, along with explicit surveillance of minority health outcomes and disparities.46 Elimination of variation to make excellence automatic may provide a de facto elimination of racial health disparities, but explicit surveillance of disparities is needed to assure equitable outcomes. The Higher Path So how do we improve health outcomes without exacerbating health disparities? The path is clear—focus on improving overall U.S. health outcomes precisely by expanding achievable health gains to all segments of the population. Elimination of the Black-White mortality gap, for example, would save 83,000 lives per year in the U.S. Elimination of the Black-White infant mortality gap could save roughly 100 infants every week in America and add more than 390,000 years of potential African American life each year. Evidence is mounting that communities can indeed move from disparities to equity, even on measures as resistant to change as the Black-White infant mortality gap. The bottom line is that achieving health equity is the most direct path to radical improvements in U.S. health status. Woolf et al. demonstrated that the number of lives saved by medical advances averted 176,633 deaths between 1991 and 2000, but that equalizing the mortality rates of Whites and African Americans would have averted 886,202 deaths.47 The authors conclude that “achieving equity may do more for health than perfecting the technology of care.”47[p.S26] Thankfully, we do not need to choose one or the other, but instead may achieve both optimal and equitable health outcomes by distributing lifesaving innovations equally to all Americans.
Robust statistical research verifies the impermanence of disparities.
George Rust 17. George Rust is with the Center for Medicine and Department of Behavioral Sciences and Social Medicine, Florida State University College of Medicine. 03/2017. “Choosing Health Equity: Investing in Optimal and Equitable Health for All.” American Journal of Public Health, vol. 107, no. 3, pp. 361–363.
Health equity is a choice. Worldwide, humanity is consciously choosing to make progress toward health equity. The World Health Organization has reported more than a 50% reduction in under-five child mortality since the year 2000. The Lancet Commission’s Global Health 2035 report asserted that, with strategic investments, nearly all countries could achieve “a grand convergence in health within a generation,” reducing maternal–child deaths in high-mortality countries to the levels of the best-performing middleincome nations by 2035.1 The World Health Organization has similarly endorsed the Sustainable Development Goal of eliminating preventable deaths of infants and children under age five years. WHAT IS A STRATEGIC INVESTMENT? Spending money does not automatically buy better health outcomes. In an American Journal of Public Health report published in 2014, Barthold et al. found “robust differences” among Organization for Economic Cooperation and Development (OECD) nations from 1991 to 2007 in the efficiency of their health spending, as measured by life-expectancy improvements achieved for each one percent increase in annual health care expenditures.2 The United States ranked poorly in these international comparisons, ranking number one in per capita health expenditures, but 19th among OECD nations in the translation of spending into increased OECD life expectancy. The human return on US health dollars invested was only one fifth to one sixth that of Germany and Switzerland. A most basic choice is total spending. Budhdeo et al. showed that a one percent decrease in health care spending in European Union countries was associated with short- and long-term increases in mortality across a wide range of age–gender groups.3 How the money is spent also matters. Among nations, greater public-sector spending had far greater impact on survival than total spending, and up to a certain level, publicsector government spending was significantly more efficient.4 The United States continues to be the outlier in these international comparisons. The moral choice to favor health care provider autonomy and free market economics over the collective good provides an ongoing demonstration of the US capacity to achieve market fragmentation and collective inefficiency in spending. A related outcome is the persistence of gaping inequalities in health care access and health outcomes, which exact not only a human cost, but also a significant and avoidable economic burden. ELIMINATING HEALTH DISPARITIES Eliminating health disparities and making progress toward health equity comes down to a series of choices. Expanding Medicaid and providing health insurance subsidies in the Affordable Care Act were small steps toward the progressive universalism that is necessary but not sufficient for ensuring population health. Repealing only those portions of the Affordable Care Act preferentially supporting the poor while maintaining only the provisions supported by families already able to purchase health insurance for themselves and their families will be a decision to move away from health equity, a choice violating the moral principles of justice and nonmaleficence. Even so, we can choose to make progress on racial/ethnic disparities in health outcomes. Fuchs recently documented mounting evidence of Black gains in life expectancy, and even greater gains among lower-income segments of the Black population.5 More than a decade ago, under the intellectual and moral leadership of David Satcher and Robert Levine, our team at the National Center for Primary Care at Morehouse School of Medicine dared to imagine, “What if we were equal?”6 We demonstrated that although Black–White disparity rate ratios had changed little over the decades from 1960 to 2000, the 40-year flatline was actually the average of significant reductions in Black–White disparities for women and increasing disparities for men. The choices we made as a nation mattered. Black women’s income as a percentage of White women’s increased significantly, even as antipoverty programs explicitly favoring women and children (the Special Supplemental Nutrition Program for Women, Infants, and Children; Medicaid; family planning; etc.) were being implemented. Black– White disparities for women declined. At the same time, our nation chose to systematically exclude men from these same programs, and to disproportionately incarcerate Black men, exacerbating male Black–White mortality disparities. Research on local-area variation in disparities shows that some communities are moving toward more optimal and equitable health outcomes without necessarily making conscious choices to pursue health equity or even being aware of their own progress. We have documented US counties that have moved from high levels of racial disparity to near equality in measures ranging from infant mortality to breast and colorectal cancer mortality across the entire population, as well as significant county-level variation in racial disparities in the low-income Medicaid population for conditions ranging fromasthma toHIV. At the root of health disparities are social determinants. When policy decisions and systems combine to increase inequalities in equity. Behavioral health. Resiliency. Social cohesiveness. All of the above. Many income, wealth, and opportunity, they represent an explicit choice to move away from health equity. Even so, social determinants are not entirely deterministic, and demographics are not destiny. Levine et al. found 66 counties in the United States [have] with lower Black male mortality rates than the US average White male mortality rate, with no significant difference in Black– White poverty rate ratio or residential segregation index.7 Perhaps we can find replicable paths to health equity by learning from these positive outlier communities that have succeeded in making a way out of no way. The road out may not be the same as the road in. PROMOTING INTEGRATION It will not be easy. There are highly complex, bidirectional associations among upstream, midstream, and downstream factors driving disparities. No single intervention will produce health equity. We must consciously connect our efforts across sectors to achieve collective impact. We must become a cohesive and effective movement, promoting integration and managing the in-betweens of all sectors. Medical care. Public health. Community leadership development. Income equality. Economic development. Wealth equality. Educational communities have individuals or agencies working in each of these areas, but let us ask—whose full-time job is it to build the coalitions, to maximize collaboration, to deepen partnerships, to measure collective impact, and to create structures for mutual accountability on the specific objective of health equity? Who is actively measuring and reporting explicitly on progress toward equality of health outcomes and social determinants repeatedly in real time, to energize rapid cycle improvement across entire communities and nations? Global health research and US health equity research alike suggest that population health and economic efficiency are not incompatible. They are mutually reinforcing. We can choose both health equity and economic efficiency by demanding the most effective human return on investment (whether measured as improved survival, or decreased suffering, or best possible health) for the greatest number of people—in other words, commit
ting to spend every dollar efficiently to achieve optimal and equitable health outcomes for all. Other nations are achieving much higher economic efficiencies and much better health outcomes by using public-sector investments for the collective good. So let us choose to spend our money wisely. Let us demand the greatest human return on investment for every dollar we spend. Let us pursue optimal and equitable health outcomes for all with precise economic efficiency. Wu
Multiple, NOT root, causality best explains healthcare outcomes—NOR is any single cause prior to others—instead, they are concurrent and inextricably joined—assertions otherwise are unwarranted hubris.
Nancy Krieger & George Davey Smith 16. Department of Social and Behavioral Sciences, Harvard T.H. Chan School of Public Health, Boston, MA, USA and, 2 MRC Integrative Epidemiology Unit at the University of Bristol. 09/30/2016. “The Tale Wagged by the DAG: Broadening the Scope of Causal Inference and Explanation for Epidemiology.” International Journal of Epidemiology, p. 1-22.
Clarifying causation: the case for pluralism Before jumping into the epidemiological evidence, some clarifications are in order. First, we recognize that debates about what constitutes ‘causation’ and demonstrating its existence have a long history—of at least a few millennia!43—and we obviously will not resolve these controversies in one essay. Second, our vantage is as pluralists: both about causality and about evidence,44,45 and we explain below what this entails. Third, our motivation to enter this debate is because we want to strengthen epidemiological science and its capacity to contribute usefully to the multisectoral work urgently needed to improve population health and reduce, if not eliminate, health inequities.16,17 In brief, within philosophical discourse the lack of a single theory or definition of ‘cause’ is widely recognized, as is the notion that there is not just one method to identify causal processes and effects.37–46 Two recent reviews, for example, have helpfully clarified44,45 that not only are there five families of “standard view” on causality’—i.e. ‘regularity, counterfactual, probabilistic, process/mechanist and agency/interventionist’ (p. 769),45 —but also that, for research conducted as guided by any of these ‘views’, there also exists ‘evidential pluralism’, referring to how ‘evidence of a variety of kinds—say, probabilistic, mechanistic, regularity—can bear on a causal hypothesis and strengthen it’ (p. 27).44 The implication is that ‘triangulation’ of evidence ‘from a number of independent methods is one and perhaps the only way to be reasonably confident about the truth of the hypothesis’ (p. 27).44 Among the many reasons triangulation of evidence based on data from different contexts is important is recognition that the longer the causal ‘chain’ or the larger the causal ‘network’, the more likely that context-dependent effects are large enough to matter, implying that the observed ‘effects’ may be historically contingent.37–47 Suggesting that these are practical, not esoteric, concerns, UNAIDS in 2010 released a guide titled An Introduction to Triangulation60 as part of their ‘monitoring and evaluation fundamentals’ series. Intended to improve the monitoring of and societal response to, the HIV epidemic and other health outcomes, the booklet reviews the strengths and limitations of four widely used types of triangulation: ‘(1) data triangulation; (2) investigator triangulation; (3) theory triangulation; and (4) methodological or method triangulation’ (p. 14),60 and further provides diverse empirical examples of why all four types of triangulation are necessary, since no one approach can guarantee robust causal inference. In our section on empirical examples, we provide concrete illustrations as to what such ‘triangulation’ can entail for epidemiological research. Causal questions and answers, and hence inferences, may further depend on spatiotemporal scale and level.14,17,37–45 Consider the classic question posed by the neurobiologist Steven Rose: what caused the frog to jump? (pp. 10-13)61 At the fast-and-tiny molecular level, an answer might be: the reaction of actin and myosin within a muscle cell. At the much slower and bigger level of organisms, an answer might be: the frog saw a snake and jumped in order to avoid being eaten. At the long-term and still larger level of species, still another answer might be: evolutionary processes leading to co-evolution of frogs and snakes as prey and predators in ecosystems affording niches for them both. Analytically distinct, all three answers are not only valid: they are concurrent, not sequential, inextricably embodied and joined in the instant that the frog jumps.62 The same causal parsing applies to epidemiological outcomes, as per the example of adiposity and cardiovascular mortality.63,64 Thus, in a single instance, a death due to cardiovascular disease and cardiovascular mortality rates may be caused by individuals’ adverse physiological and metabolic profiles (e.g. high blood pressure, high lipids) and by the sociopolitical and economic conditions that drive both the political economy of ‘Big Food’ and population distributions of risk of weight gain and inadequate medical care.54,56,65,66 Such a view expands options for different levels and types of preventive interventions. For persons already with high adiposity, population research at the molecular and physiological levels suggests that causal links between adiposity and risk of death due to ischaemic heart disease can be alleviated, if not completely broken, by intervening pharmacologically, physiologically or through individuals’ behaviour changes, on such biological parameters as lipid profiles and blood pressure.67,68 Additional research at the societal level points to the necessity of structural interventions to promote healthy ways of living, premised on conceptualization of food security and sustainability as a human right, as opposed to treatment of food as primarily a for-profit commodity, so that all people can have access to affordable, nutritious and pleasurable meals.54,65,66 The point is both/and, not either/or. Moreover, demonstrating that epidemiologists’ concerns about narrow renderings of ‘causation’ that omit societal causes is not new, Textbox 1 presents an analogous ‘fable’, published shortly after the end of World War I by the epidemiologist F.G. Crookshank (1873-1933), in an essay titled ‘First principles: and epidemiology’, in which a single-minded police surgeon avers that if the cause of death by murder is a bullet, then the cause of death by war is many bullets (and sometimes also poisonous gas).69 To Crookshank, it was ludicrous to posit that germs alone were the single ‘true cause’ (‘causa vera’) of epidemics and the only legitimate target of both inference and intervention; instead, for both war and epidemics, there could be no avoiding of discussion of ‘racial, economic, or political conditions’, not simply as ‘predisposing factors’ but as causes in their own right.69 Social and political challenges to vaccine distribution, e.g. for polio, measles and human papilloma virus (HPV), serve to underscore this point.70–73 Of course, as with counterfactuals, the danger lies in where one draws the line, to avoid infinite regress as to the number of factors that need be considered. Continuing the military metaphor, Figure 2 shows an alarming example of the ultimate arrow salad—or spaghetti: a PowerPoint slide prepared in 2009 about US military strategy in Afghanistan.74,75 Even Crookshank might have been daunted. Causal judgments: inference to the best explanation Fortunately, recent work on ‘inference to the best explanation’ (IBE), especially as articulated by the philosopher Peter Lipton (1954-2007),42,76,77 can provide epidemiologists—and other scientists—with an alternative cogent, historically grounded, conceptual approach to thinking about, sorting through, and arriving at robust explanations.5,42,45,48,49,78–80 Curiously, although epidemiological research has been integral to Lipton’s arguments— as per his analysis of Ignaz Semmelweis’s 1844-48 research on childbed fever (pp. 74-90)42 (see Textbox 2) —discussion of IBE in the epidemiological literature is surprisingly limited5,48,49,80 and nowhere to be found in many leading epidemiological publications on causal inference.1– 4,6,7,30,32,35 What, then, is IBE? As explained by Lipton and other philosophers of science, IBE is a type of reasoning widely used by scientists (and most people in everyday life).42,76–79 It is also increasingly viewed
by philosophers and historians of science as being, in the words of Douven, the ‘cornerstone of scientific methodology’ and also ‘medical diagnosis’,78 with the latter notably and necessarily requiring cross-level inferences bridging from knowledge about unique individual patients to grouplevel regularities.81 IBE’s primary concern is explanation, an expansive task that requires critical reasoning about extant (and missing) evidence and competing hypotheses that could explain the evidence. Reliant on one type of inductive reasoning, variously termed ‘abduction’ or ‘defeasible’ reasoning (see Table 1 for definitions),42,78,79,82 IBE does not and cannot afford the same pristine certainty provided by deductive reasoning, whereby the conclusion logically must be true if the premises are true (e.g. Sam is a person, all people are mortal, therefore Sam is mortal). Though this might seem a drawback, contemporary scholarship increasingly demonstrates that IBE far better reflects the actual practice of science, advances in scientific explanation and successful implementation of what has been learned, in such diverse fields as the physical, biological, epidemiological, clinical and social sciences, as compared with the idealized hypothetico-deductive approach37–42,76–79,82 which over the past 30 years has been variously lauded,83–86 rejected87,88 and accepted in modified form89,90 in the epidemiological literature. In brief, the essence of the IBE approach is to ‘think through inferential problems in causal rather than logical terms’ (p. 208)42 and to employ a ‘two-stage mechanism involving the generation of candidate hypotheses and then selection from among them’.42, (p. 208) IBE is thus driven by theory, substantive knowledge, and evidence, as opposed to being driven solely by logic or by probabilities. Absolute Cartesian scepticism is rendered moot, since the emphasis is on the best explanation, as opposed to the conjuring of any explanation however improbable (or useless).78 Nor is IBE hobbled by a common problem that deductive reasoning cannot resolve: how to evaluate competing hypotheses when none are logically refuted by the extant evidence (p. 452-453)76; for examples, see Textbox 2 regarding Lipton’s analysis of how Semmelweiss adjudicated between such competing hypotheses regarding cause(s) of childbed fever. Guiding choice among explanations for IBE is a contrastive approach geared to identifying what Lipton has termed the ‘loveliest’ as opposed to merely ‘likeliest’ hypothesis, whereby criteria for ‘loveliest’ include: ‘scope, precision, mechanism, unification and simplicity’ (p. 423)76; ‘prediction’ does not garner special consideration because opposing hypotheses may still both predict a given phenomenon (e.g. disease rates higher in groups exposed vs not exposed to X), but not be equally ‘lovely’. Moreover, by emphasizing the need to test aptly chosen contrastive hypotheses, the IBE approach (per the examples provided in Textbox 2 for childbed fever) provides guidance for explanatory causal reasoning that goes beyond listing whether the evidence is, minimally, coherent (as per the Hill criteria).42,76,77 IBE is additionally highly attuned to contextual knowledge, and hence to the claims involved when assertions are made about ‘all else being equal’—whether via experimental design or statistical ‘control’.46,47,78,79 It thus underscores the inevitable reliance, for good or for bad, upon scientific judgment. From the standpoint of IBE, ‘causal inference’ cannot be reduced to what the philosopher Stathis Psillos has termed ‘topic-neutral and context-insensitive’ algorithms (p. 441)79, whether involving deductive logic or Bayesian statistics. Core to IBE is the understanding that there are no clear-cut rules or short cuts that minimize the need to amass substantive expertise and to generate and think critically about contrastive hypotheses—but nor is it the case that ‘anything goes’. Stated another way, IBE clarifies that data never speak by themselves—either to computer algorithms or to people—and nor do beliefs about probabilities simply drop from the sky. Active scientific judgment is inevitably involved, with regard to who and what is included and excluded. Scientists accordingly are enjoined to think about the full range of evidence, not just data germane to one specific hypothesis, and also to test hypotheses with diverse sets of methods whose assumptions are uncorrelated, so as to strengthen causal inference5,42,45—a point we discuss further in relation to the empirical examples we next analyse. Although epidemiologists have long been aware of the need to compare data across the proverbial ‘time, place, and person’ 5,12–14,91 (or, rather, social group17), the emphasis on comparison across methods and causal inference frameworks is more recent.5,42,45 IBE further points to the necessity of eschewing the hubris of assuming that scientists can exhaustively delineate the profound complexity and quirkiness of the biophysical and social worlds in which we live, a world in which unanticipated discoveries of unimagined phenomena and causal connections are as much the rule as they are the exception.16,17,37–42,47,76,77. One would need infinite knowledge, after all, to generate an exhaustive list of all conditions or factors that would ensure such assumptions as ‘other things being equal’ or ‘other things being absent’. Who would have thought for example, before work conducted in the past decade, that olfactory receptors in both humans and other species occur in just about every organ including our skin, and are not just restricted to the nasal passage?92,93 Although the issue is far from closed, an explanatory reframing of these receptors as specialized evolved chemical detectors, not solely for smell, notably opens up a previously untheorized biological possibility, one with potential epidemiological as well as clinical relevance. An analogous case, relevant to cancer and cardiovascular disease, has been the explanatory reframing of estrogen from being a molecule primarily or solely preoccupied with ‘sex’ and reproductive tissues to being a steroid involved in cell growth and apoptosis throughout the body,94,95 with the expression of estrogen receptors being both tissue-wide and highly responsive to exogenous stimuli.96–98 Different conceptualizations of key parameters and different explanations entail different scientific programmes and different interventions, one of the many reasons that debates over causal inference are so charged. Seeking explanations: epidemiological examples We now redirect our focus to three concrete epidemiological examples. Our purpose is to show why we cannot restrict the work of causal inference to solely a counterfactual approach, and why we may well do better to rise to the challenge of attempting to infer the best explanation. What a DAG cannot discern: the case of pellagra We start with a seemingly simple yet informative example: explaining why rates of pellagra were high among children in the US South who were institutionalized in orphanages in the early 20th century, as compared with other children in the region who were not institutionalized.99–104 During this period, major debates within and across causal levels raged over whether pellagra—a disease whose prevalence was known to be both high and seasonal among people whose diet was primarily based on corn—was caused by an infectious agent, a fungus, stress, heredity or even capitalism itself.99–105 Why the association between institutionalization and the disease? The two leading hypotheses involved the same causal elements, but the arrows pointed in entirely opposite directions. The ‘germ theory’ hypothesis held that children who came to orphanages had a higher rate of infection, which they then more readily transmitted to other children within the crowded orphanages (but then: why did the staff
not also get ill?). The contaminated food hypothesis held that the institutions caused the higher rates of pellagra because they served tainted food, i.e. contaminated corn mush (but then why did staff, who sometimes also ate the corn mush, not get ill?).101 The ‘stress’ and ‘capitalism’ hypotheses99,100 although perhaps accurately identifying causes and aspects of the plight of institutionalized children, nevertheless did not explain why institutionalized impoverished children everywhere did not get pellagra. Both hypotheses could be represented by a DAG including the same elements, but with causal arrows in the reverse direction. To resolve these conundrums, Joseph Goldberger devised an entirely new hypothesis: institutions caused the higher rates of pellagra because they served deficient food, whereby the orphanages fed children a poverty diet of corn mush supplemented by little else (whereas the staff ate not only the corn mush but also other more nutritious food, thereby preventing pellagra)99–104—and he conducted experiments with people (including himself, relatives, colleague, and prisoners) and animals to test his hypothesis.99–104,106,107 Later research revealed the missing factor was niacin, i.e. Vitamin B3. 104 Of note, Goldberger’s hypothesis used the same three key variables (‘orphans’, ‘institutions’, ‘pellagra’) employed in the two dominant rival hypotheses (‘germ’ and ‘contamination’) but utterly transformed understanding of the causal relationships at play by introducing into the equation what was then a new way of thinking about aetiology: disease arising from deficiency, not excess. His alternative hypothesizing thus would yield a DAG with the same anchoring elements but totally different causal pathways, reflecting a new understanding of mechanisms of disease causation. Goldberger’s hypothesis, initially ill-received and unlikely, thus had to battle for recognition—and among the three it was also, in Lipton’s terminology, the ‘loveliest’. Why? Because, as Goldberger and his colleague Edgar Sydenstricker12 emphasized at the time108–110 it explained not only: (i) who did and did not contract pellagra at the orphanages; (ii) the seasonal nature of the disease (as tied to when money for varied foods ran out, after the harvest season, among impoverished sharecroppers in the US South, leading to a diet of primarily corn mush leavened by some pork fat and perhaps a few greens); but also (iii) why the disease was so common in the US South among impoverished (and/or institutionalized) persons, but was not so common among impoverished (and/or institutionalized) persons in the US North (because the former relied far more heavily than the latter on corn mush diets).99,106,108–110 Granted, Goldberger’s hypothesis was not popular among US Southern politicians or public health officials.99–104 Why? Because it placed blame on not only the orphanages but also the structural institutions that protected sharecropping and high rates of southern poverty.99,100,110 To Goldberger and Sydenstricker however, understanding the interplay of causes across and within levels was essential for effective action in public health12,99,100,110—a truncated account would not suffice. One final useful point raised by the example of pellagra concerns why technical manipulability should not be confused with causal powers. Thus, whether or not people had 10 International Journal of Epidemiology, 2016, Vol. 0, No. 0 at University of Hong Kong Libraries on October 1, 2016 https://ije.oxfordjournals.org/ Downloaded from the technology to isolate and manipulate levels of Vitamin B3, its absence and presence still produced causal effects. Nevertheless, using a mixture of observational and experimental epidemiological evidence along with a hefty dose of theorizing informed by deep knowledge of infectious disease epidemiology, Goldberger was able to arrive at a pragmatic causal explanation that, using Susser’s causal lexicography, got it ‘right enough’14 to enable important effective preventive interventions to be implemented.99–104,106–110 When is a methodological solution not the answer: using biology and ‘triangulation’ to parse the puzzle of smoking, infant mortality, and the ‘birthweight paradox’ Next, we consider an example where it may be that the reasoning encoded in DAGs may have initially appeared to solve a paradox, only for further work to clarify that the proposed solution potentially may not be a satisfactory— or indeed ‘lovely’—deep explanation. The case is that of the well-known ‘birthweight paradox’, which first garnered attention in the early 1960s as part of the disputes (fueled by tobacco company funding22,23) over whether smoking harms health.111,112 In brief, the apparent paradox was then (and remains now) that although the average birthweight is lower for liveborn infants exposed vs not exposed to tobacco smoke as fetuses, nevertheless the infant mortality rate among low-birthweight infants is higher among infants unexposed vs exposed to tobacco smoke when in utero111–114 The counterintuitive implication is that maternal smoking is protective for infant mortality for liveborn low-birthweight infants. Over the past 40 years, many rounds of arguments have appeared in the pages of many journals, offering diverse appraisals as to whether the ‘paradox’ is ‘real’, as opposed to an artefact created by selection bias, choice of wrong referent or ‘at risk’ groups (e.g. fetus vs liveborn infant), etc.111–118 As interest in using DAGs in epidemiology began to rise in the early 21st century, this ‘paradox’ not surprisingly presented itself as a ripe candidate for analysis. The first round of papers using DAGs to address this paradox generally concluded that ‘collider bias’, i.e. introduction of confounding by an unmeasured factor due to stratifying or conditioning on an intermediate factor (in this case birthweight), is the cause of the apparent ‘paradox’.114,116,117 The take-home message of these papers is that the paradox is resolved: the problem has been dealt with by appropriate methods. In other words, the explanation is to explain away the observed association as a consequence of bias induced by faulty methods. But is this apparent end of the story? Suggesting there may be yet more wags to this particular tale, an elaborate and biologically plausible alternative explanation exists, one that may well do a better job at being ‘lovelier’ by virtue of elucidating mechanisms and opening up possibilities for unifying understanding of other seemingly unrelated ‘paradoxes’. It is that infants who are low-birthweight for reasons other than smoking may well have experienced harms during their fetal development unrelated to and much worse than those imposed by smoking, e.g. stochastic semi-disasters that knock down birthweight as a result of random genetic or epigenetic anomalies affecting the sperm or egg before conception or arising during fertilization and embryogenesis.16,114,118 Of note, the proposed alternative biological explanation cannot be discerned from a DAG. Indeed, as pointed out in a new reflection on using DAGs to parse this paradox, the DAGs for collider bias and for heterogeneity of low-birthweight phenotypes have a similar structure.117 A larger and ‘lovelier’ point is that profoundly different causal pathways can result in two distinct groups nevertheless exhibiting the same state—and a DAG, by itself, cannot resolve which hypothesized pathways, if any, are correct. An IBE approach further recognizes that no one study design can provide a definitive robust test of the hypotheses at issue. Instead, as noted above, what is required is evidential pluralism, i.e. triangulation of evidence from empirical studies whose methodological assumptions, limitations, biases and errors (which inevitably affect all studies) are uncorrelated5,42–45,48,49,60,76,77,119. In Textbox 3 we provide examples of what such systematic triangulation of evidence, derived using approaches with different biases, entails for the example of smo
king and birthweight.119–125 A similarly structured paradox, also involving children’s health, generated even more heated discussion 70 years before the birthweight paradox and likewise demonstrates the important value of the type of reasoning encoded in DAGs and also the work needed to determine if the underlying encoded assumptions are biologically and socially sound. In 1910, Karl Pearson and colleagues reported data apparently showing no detrimental effects of parental alcoholism on the health and development of their offspring,126,127 results which not surprisingly generated fierce controversy.128 The economist A.C. Pigou, in an elegant riposte, pointed out how selection of the sample could generate such a null association even when an adverse influence existed in the overall population,129 thereby describing what would today be termed ‘collider bias’.130 Pigou’s description of how this seeming paradox could arise was specific to the particular conditions of Pearson’s investigations.129 Attesting to the value of DAGs for identifying the ‘transportability’ of the identified type of bias, i.e. the conditions under which it can affect other investigations,33 other similarly structured explanations for particular issues have been produced in the epidemiological literature many times since, from Berkson’s presentation of what became his eponymous bias,131 to Greenland and Neutra’s discussion of a potentially misleading study design proposed to investigate the influence of endogenous estrogens on endometrial cancer.132 As these examples suggest, formal formulation of such potential biases, which can be represented in DAGs, clearly provides an incisive way of extending thinking about bias from one situation to another, one that can aid the overall evaluation of evidence in any given particular situation. It is another matter entirely, however, to elucidate empirically, whether the hypothesized biases do indeed exist and if they are sufficient to generate the observed associations. Continued Method Strengths in comparison with conventional observational analysis Key assumptions correctly specified model (this assumption relates to all methods to a greater or lesser degree) Cross-contextual comparisons Will reveal context-specific confounding No unmeasured confounding which (unlike the assessed confounders) is similar in magnitude between contexts and contributes substantially to the observed associations Negative control studies Reveals existence of potential unmeasured confounding. Negative control is associated with confounders to the same extent as the exposure (or outcome) of interest is associated with these confounders Within-sibship studies Robust to fixed maternal effects that could confound the association The important confounders do not change between pregnancies in a manner that is associated with change in maternal smoking behaviour Children of twins Between-MZ maternal twin pair analysis not subject to genetic confounding, or confounding by other factors that are shared between monozygotic twins. Comparison of between-MZ with between-DZ twin analyses allows estimation of extent of genetic confounding No unmeasured confounding by factors that differ between twins Mendelian randomization (MR) no reverse causation No pleiotropic effect of the genetic variants that influence the outcome independent of the exposure of interest Non-genetic IVs No systematic confounding The instrumental variable does not relate to confounding factors and does not impact on the outcome except through the exposure of interest Randomized controlled trials (RCTs) Randomization leads to no systematic confounding The intervention does not have effects except through changes in the exposure of interest The above is a non-exhaustive list of study designs that can contribute to triangulation of evidence. Whereas the findings of all study types can be biased, as can be seen above, the source of potential bias is different across the study types and will not associate in such a manner that possible biases would all point in the same direction (and with the same magnitude of effect) to produce the same misleading causal inference. International Journal of Epidemiology, 2016, Vol. 0, No. 0 13 at University of Hong Kong Libraries on October 1, 2016 https://ije.oxfordjournals.org/ Downloaded from At issue is not simply whether a potential bias exists, but also whether the plausible magnitude of its quantitative effect is sufficient to meaningfully bias the study results.133,134 Nor can a DAG provide insight into what omitted variables might be important or whether a variable is even conceptualized appropriately (as per the pellagra example); only use of relevant scientific theories (including epidemiological theories of disease distribution) can aid conceptualizing the phenomena that co-produce the hypothesized causal relationships13–17,20,21,37–43. A corollary is that despite the clear value of DAGs for formalizing certain types of biases, this feature does not mean this approach has more inferential value compared with components of evidence that cannot be disciplined in this way, e.g. the structuring effects of macroeconomic and social forces. An appeal for ‘evidence-based’ policies that relies solely on randomized clinical trials or other interventions carried out on individuals, will inevitably lead to debased policy making, as we have argued elsewhere.135,136 Causes do not cease being causes if they are challenging to study or to address. Racism and health: the harm caused by spurious ‘causal inference’ and ‘counterfactuals’ Our final example accordingly concerns a structural determinant, using the long-argued case of racism and health.137–141 One alarming feature of late 20th and current 21st century epidemiological literature on ‘causal inference’ is the re-appearance of previously rebutted causal claims that ‘race’ is an individual ‘attribute’ and that it cannot be a ‘cause’ because is not ‘modifiable’.1,34,36,142–145 Five such examples are provided in Textbox 4, culled from diverse public health, epidemiological, biostatistical and sociological publications.1,34,142–144 They are congruent with new lines of contested work, supported by considerable NIH funding, that seek to ‘re-molecularize’ race.146–153 However, we clarified back in 200050 and reiterated since,154 in accord with a considerable literature extending back to the 19th century,17,137–141,147,152–163 the problem— one with enormously harmful public health and policy implications—that this approach to causal inference and counterfactuals starts at the wrong level, and uses DAGs to bark up the wrong tree and indeed miss the forest entirely. What is the problem with viewing ‘race’ as an ‘inherent feature of individuals’ (p. 70),1 or as an ‘immutable characteristic’ (p. 775)144? The problems are two-fold: bad biology and bad social science, compounded by an ahistorical approach to both the literature and the evidence. First, with regard to bad biology, this belief fails to acknowledge reams of genetic evidence demonstrating that H. sapiens cannot meaningfully be parsed (including by so-called ‘cluster’ programmes) into discrete genetically distinct ‘races’ who can be singularly identified by a set of traits and for whom variation within groups is less than variation between groups.146–153 By now, the notion of discrete, let alone ‘fixed’, ‘races’, especially in countries such as the USA with its history of being a colonial-settler and immigrant nation that also imported slaves and upheld legal slavery for centuries (1619-1865), is especially absurd.17,28,54,146–153 Second, with regard to bad social science, the view of ‘race’ as, in effect, a ‘natural’ kind (existing a priori ‘real’ grouping that exists independent of human classificatory schemes), completely disregards nearly two centuries’ worth of scholarship on the histories of the social creation—and enforcement, by law, by force and by terror—of the varied ‘racial’ categories deployed in
diverse societies, let alone their changing permutations over time.17,28,54,137–141,146–156,162–168 It also ignores how these ‘racial’ categories, like any social relationship, are co-constitutive: each is defined and bounded in relation to the other, just as are master and slave, and masculine and feminine.28,137, 169,170 Change the social relationship, and the categories and how people relate to them and what they mean for their lives and their health will consequently change as well. This type of dynamic co-causation replete with feedback loops, however, is not what is conventionally (or easily) depicted in DAGs. Even so, epidemiological evidence provides supportive evidence for the hypothesis that modification of race relations causes changes in the population distributions of health. The relevant counterfactual pertains to racism, not ‘race’. Examples include studies showing the beneficial impact of the abolition of Jim Crow in the mid 1960s on US Black/White inequities in infant mortality rates, above and beyond improvements linked to such Great Society programmes as the ‘War on Poverty’ and the introduction of Medicare, Medicaid and desegregated health care facilities.172–176 Causing these ‘modifications’ was the power of social movements which challenged structural racism, forced repeal of unjust laws, and created space and resources for health and social scientists and health and social work practitioners to provide input into newly possible programmes.177–180 Treat ‘race’ as a given and focus only on discrete ‘factors’ such as ‘income’, as some proponents of the DAG approach propose,34,142,145 and a DAG will tell a biased tale that is woefully incomplete for guiding policy and promoting health equity. Although such realities do not sit easily with admonitions for epidemiologists to focus only on ‘causes’ that can be ‘modified’ by health or policy professionals,181–183 they are the facts we confront when dealing with health inequities. The larger implication is that the ‘loveliest’ explanation of racial/ethnic inequities in health is the one that engages most deeply with the ugly social facts of past and present realities of racial inequality and its myriad social, economic and embodied manifestations.17,62,137–141 Far more comprehensive explanations of the epidemiological evidence can be achieved if, rather than treating ‘race’ as an unmodifiable ‘inherent feature’ and positing either an endless and illusory set of ‘racial’ genetic differences in gene frequency for each and every ailment or a set of material conditions that are held to be ‘modifiable’ without addressing inequitable race relations, we instead tackle the causal relationships between racism and health head on. To do so, we can be aided by the central insights of the ecosocial theory of disease distribution and focus attention on how people literally embody, biologically, their societal and ecological context, thereby producing population patterns of health, disease and well-being.17,62,184,185 Conclusion We deliberately have not offered one prescription for how epidemiologists can best infer causation. No such prescription exists. Nor, of course, do we suggest that some approaches (e.g. use of DAGs where appropriate) be ruled out of court and banished to the dog-house. Instead, as we hope the examples we have provided demonstrate, there is no short cut for hard thinking about the biological and social realities and processes that jointly create the phenomena we epidemiologists seek to explain, always with an eye towards producing knowledge that we and others can use to improve population health, reduce preventable suffering and, we add, advance health equity. To accomplish these goals, we advocate that the field of epidemiology consider judicious use of the broad and flexible framework of ‘inference to the best explanation’. This stance requires not only that we be open to being pluralists about both causation and evidence but also that we also rise to the challenge of forging explanations that aspire to ‘scope, precision, mechanism, unification and simplicity’ (p. 423).42 No single study, however beautifully designed, can unequivocally demonstrate causation. To improve our causal explanations, we would do best instead to opt for causal triangulation.5,42,44,48,49,60,186,187 In practical terms, as illustrated by Textbox 3, this means systematically employing and assessing evidence in relation to diverse study designs, involving different methodological assumptions and biases,5,48,49,60,186,187 and also testing our hypotheses in different populations and in different historical periods5,60,186–190 to see if results are robust to the confounding structures encountered and the analytical methods used. In essence, the biases for each method employed— since, of course, all methods have potential biases—would be through different processes and unrelated to the biases in the other methods. DAGs and counterfactual approaches are but one set of conceptual tools that epidemiologists can employ, and should not occupy a privileged place in delimiting the kinds of questions we ask or causes we theorize. We would hazard the guess that many who advocate these styles of thought would probably agree with our position, but might not see the current emphasis on applying formal rules as leading to questions becoming restricted to those which fit neatly within these rules. Suggesting, however, that we are not raising straw arguments are narrow framings of what constitutes legitimate causal inference accompanying the burgeoning use of these methods and advocacy to do so.1,6–8,11,30–32,34,35,142–145 Our fear is that these new ‘cutting-edge’ methods will, by virtue of their rule-bound nature, limit the scope of epidemiology and its impact on the urgent real-world problems of global population health.9,10,17,33,53–56 We close by noting that in 1957, Jerry Morris’ included in ‘Uses of Epidemiology’ a section he titled ‘Changing People in a Changing Society’, in which he raised a series of questions that have fruitfully shaped the field’s research programme for now well over a half-century (pp. 19–23).13 Among his many questions were: ‘What are the implications to Public Health of more married women going out to work? And less of the older men? Of still increasing urban – and suburbanization? The rapid growth of new towns? Smokeless zones (still with sulphur)? The building of new power stations? Of less physical activity in work and more bodily sloth generally? … Of the more than 1000 extra motor vehicles a day? Of the rising consumption of sugar … Of the cheapening of fats? … Such questions (of contemporary history, it might be said) could readily be multiplied’ (p. 22).13 Noting that ‘[s]ome of the issues mentioned above cannot yet be framed in scientific terms; but parts at least of others could be tackled more energetically’, Morris’ nonetheless optimistically averred: ‘Perhaps epidemiology with its special skills in identifying what matters more and what matters less, its concern for woods rather than trees, perhaps the epidemiological method can simplify such issues and usefully raise some bold questions about these too’ (p.23).13 Any approach to causal inference that cannot help us answer the kinds of prevention-oriented questions that Morris’ posed, that cannot brook analysis of inequitable social relations as a cause of population health and health inequit
ies50–56,137–141 and that cannot conceive how to address the causal epidemiological implications of the planetary crisis of global climate change57–59,191,192 is inadequate—and if it restricts what questions can be asked, it is wrong. We can—and must—do better.
Assess the case AND our impacts on a pre-theoretical level; that episodes of injustice in healthcare share traits with other violence does NOT justify transcendental attribution to a single social force. Theories are only useful as far as they explicate context.
Gregory Fernando Pappas 17. Gregory Fernando Pappas is Professor at Texas A&M University. He is the author of numerous articles on the philosophy of William James and John Dewey. Pappas is the author of Pragmatism in the Americas, a work on the philosophical connections between American Pragmatism and Latin American Philosophy. He is also the author of John Dewey’s Ethics: Democracy as Experience, the first comprehensive interpretation of Dewey’s ethics. Pappas has been a Fulbright Scholar and the recipient of a Ford Foundation Postdoctoral Fellowship, the William James and the Latin American Thought prizes by the American Philosophical Association; and the Mellow Prize by the Society for the Advancement of American Philosophy. 04/21/2017. “Empirical Approaches to Problems of Injustice Elizabeth Anderson and the Pragmatists.” Pragmatism and Justice, edited by Susan Dieleman et al., Oxford University Press, pp. 82–96.
Pragmatism: Problematic Situations of Injustice as Starting Point Anderson’s claim is that the pragmatists’ “method is unorthodox” because it starts “from a diagnosis of injustices in the actual world” (2010, 3). However, under Dewey’s formulation, the pragmatist methodology is more “unorthodox” and more demanding than Anderson thinks it is, because beginning with a diagnosis is already to start with a theoretical account and not with the concrete problems of injustice as they are experienced in the midst of social life. Let us examine the methodological reasons why Dewey thinks designation should precede diagnosis in an empirical philosophy. In Experience and Nature, Dewey names the empirical way of doing philosophy the “denotative method” (LW 1:371). What Dewey means by “denotation” is simply the phase of an empirical inquiry where we are concerned with designating, as free from theoretical presuppositions as possible, the concrete problem (subject matter) for which we can provide different and even competing descriptions and theories. Once we designate the subject matter, we then engage in the inquiry itself, including diagnosis, possibly even constructing theories and developing concepts. Of course, that is not the end of the inquiry. We must then take the results of that inquiry “as a path pointing and leading back to something in primary experience” (LW 1:17). This looping back is essential, and it never ends as long as there are new experiences that may require a revision of our theories. Injustices are events suffered by concrete people at particular times and in particular situations. We should start by pointing out and describing these problematic experiences, instead of starting with a theoretical account or diagnosis of them. Dewey is concerned with the consequences of not following the methodological advice to distinguish designation from diagnosis. Definitions, theoretical criteria, and diagnosis can be useful; they have their proper place and function once inquiry is on its way. But if stressed too much at the start of inquiry, they can lead us to overlook aspects of concrete problems that escape our theoretical lenses. We must attempt to designate the subject matter pretheoretically, i.e., to “point” in a certain direction, even if it’s with only a vague or crude description of the problem. This is a difficult task for philosophers because we are often too prone to interpret the particular problem in a way that confirms our most cherished theories of injustice. One must be careful to designate the subject matter in such a way as to not slant the question in favor of one’s theory or theoretical preconceptions. A philosopher must make an honest effort to designate the injustices based on what is experienced as such, because a concrete social problem (e.g., injustice) is independent of and neutral with respect to the different possible competing diagnoses or theories about its causes. Moreover, without this effort, there is no way to test or adjudicate between competing accounts. That designation precedes diagnosis is true of any inquiry that claims to be empirical. To start with the diagnosis is to start with something other than the problem. The problem is pretheory or preinquiry not in any mysterious sense, but simply in the sense that it is first suffered by someone in a particular context. Otherwise, efforts to diagnose the causes of the problem lack an object and the inquiry cannot even be initiated. In his Logic, Dewey lays out the pattern of all empirical inquiries. All inquiries start with what he calls an “indeterminate situation,” prior even to a “problematic situation” (LW 12). Here is a sketch of the process: Indeterminate situation → Problematic situation → Diagnosis: What is the problem? What is the solution? (operations of analysis, ideas, observations, clarification, formulating and testing hypothesis, reasoning, etc.) → Final judgment (resolution: determinate situation). To make more clear or vivid the difference between Anderson and Dewey on the starting point, we can use the example of medical practice. The doctor’s starting point is the experience of a particular illness of a particular patient, i.e., concrete and unique embodied patients experiencing a disruption or problematic change in their lives (LW 6:6). The problem becomes an object of knowledge once the doctor engages in certain interactions with the patient, analysis, and testing, which lead to a diagnosis. For Dewey, “diagnosis” occurs when the doctor is engaged in operations of experimental observation in which she is already narrowing the field of relevant evidence, concerned with the correlation between the nature of the problem and possible solutions. Dewey uses the example of the doctor to emphasize the radical contextualism and particularism of his view. The good doctor never forgets that this patient and “this ill is just the specific ill that it is. It never is an exact duplicate of anything else” (MW 12:176). Similarly, the empirical philosopher in her inquiry about an injustice brings forth general knowledge or expertise to an inquiry into the causes of an injustice. She relies on sociology and history, as well as knowledge of all forms of injustice, but it is all in the service of inquiry about the singularity of each injustice suffered in a situation. Just as with the doctor, empirical inquirers about injustice must return to the concrete problem for testing, and should never forget that their conceptual abstractions and general knowledge are just means to ameliorate what is particular, context- bound, and unique. The correction or refinement that I am making to Anderson’s characterization of the pragmatists’ approach has methodological and practical consequences for how we approach an injustice. The distinction between the diagnosis of the problem and the designation of the problem (the illness, the injustice) is an important functional distinction that must be kept in inquiry because it keeps us alert to the provisional and hypothetical aspect of any diagnosis. To rectify or improve any diagnosis we must return to the concrete problem; as with the patient, this may require attending as much as possible to the uniqueness of the problem. This is in the same spirit as Anderson’s preference for an empirical inquiry that tries to “capture all of the expressive harms” in situations of injustice (2010, 6). But this requires that we begin with and return to concrete experiences of injustice rather than beginning with a diagnosis of the causes of injustice provided by studies in the social sciences. For instance, a diagnosis of causes that are due to systematic, structural features of society or the world disregards aspects of the concrete experiences of injustice that are not systematic and structural. Making the designation of problematic situations of injustice our explicit methodological starting point functions as a directive to inquirers to locate the problem before venturing into descriptions, diagnosis, analysis, clarifications, hypothesis, and reasoning about the problem. These operations are instrumental to its amelioration and must ultimately return to and be tested against the problem that sparked the inquiry. This directive makes inquirers more attentive to the complex ways in which such differences as race, culture, class, or gender intersect in a problem of injustice. Sensitivity to complexity and difference in matters of injustice is not easy; it is a very demanding methodological prescription because it means that no matter how confident we may feel about applying solutions designed to ameliorate systematic evil, our cures should try t
o address as much as possible the unique circumstances of each injustice. This directive is not opposed to inquiry into how big categories (race, capitalism, colonialism, modernity) produce and perpetuate injustices. However, such abstract and general inquiries are ultimately just tools to illuminate particular injustices, just as knowledge of research about diseases of entire populations can assist a doctor. The directive keeps us honest, fallible, and aware of our limitations as intellectuals because it implies that there is always a gap between our best diagnoses and theories of injustice, and the concrete problems of injustice. We cannot assume that our theories or our ways of gathering evidence have captured all there is in concrete problematic contexts. This is relevant to the second qualification that I want to make to Anderson’s characterization of pragmatism as a nonideal: the breadth of experiential resources. Pragmatism: A Broad View of the Experiential Resources for Inquiry Given its starting point, pragmatism has a broad view of the initial experiential material to be analyzed by inquiry. Contrary to what Anderson seems to suggest, there is no good reason for a pragmatist approach to injustice to limit its experiential resources to the empirical research and material provided by scientific studies. In fact, without the use of other resources, we risk not capturing those aspects of injustices that may not be amenable to scientific types of inquiry. Starting inquiry with the features of events or injustices that are already known or as they are diagnosed or accounted for by a scientific investigation (such as the social sciences) is valuable, but prior to these theoretical lenses there is the problem experienced (sometimes suffered) by concrete human beings in their robust and raw character. We cannot ignore the crudities of life just because they are crude. In making a diagnosis, we are already reflectively removed from the problem and have been selective in disregarding those features that seem irrelevant to our inquiries. For pragmatism, admitting the selectivity of theoretical lenses in all inquiries does not undermine the notion that some inquiries are better than others (more on this later). But it does imply that what scientific research reveals about a concrete problem is partial and may need to be supplemented by other approaches and experiential resources. In The Imperative of Integration, Anderson reaches her conclusions based on empirical academic research, including social science findings in economics, sociology, and psychology. These findings are important since they seek causal regularities behind the problems, but they need to be complemented with other ways of capturing the complexity and uniqueness of the concrete problems of injustice. For instance, Anderson’s diagnosis would have benefited from more concrete interactions with the marginalized of whom she wrote, just as a doctor can enhance her diagnosis via interaction with her patient. Jane Addams used this method of first- order empiricism to inform her work (1902). She thought that one must interact and converse with others to understand, as closely as possible, their experiences of social inequality, discrimination, and oppression. Addams did not confine herself to academia; she put herself into the world. Importantly, experience was her data— interactions unmitigated by statistical compilations, theoretical interpretations, and the like. Sometimes a doctor needs to engage, be participant, and take a sympathetic interest in the condition of the patient to gather new evidence. To understand persons, communities, and even social structures requires that we experience them as historically evolving in a particular context. I am not claiming that Anderson’s conclusions are invalidated by her distance from the raw data of experience, or her lack of interaction with the experiences of those who directly suffer injustice; they may be perfectly sound. The point I want to make is a more general one about how pragmatists should try to approach problems of injustice. Both empirical research and first- order experiences can be utilized together in an effort to identify the problems that persist in society and to develop solutions to these problems. The idea of enmeshing oneself in the circumstances of others, and thereby gaining a broad and rich perspective, received uptake in sociology (e.g., Robert Park) under the influence of John Dewey and George Herbert Mead in Chicago in the first part of the twentieth century. This is what today is known as the qualitative and ethnographic approach to sociology. However, it would be a mistake to identify the pragmatist approach as one that negates the importance of other techniques such as the ones stressed in quantitative research; they too have their proper place and function. Recently, there has been a new generation of sociologists that has rectified this narrow conception of the pragmatist approach. In fact, pragmatism is now considered the philosophical basis of mixed- methods research (MMR).2 However, in regard to methodologies and experiential resources, pragmatism has an even more inclusive view than does MMR. Quantitative and qualitative methods are sociological and as such are only interested in the sort of data that interest sociology: facts about human beings as social animals or members of groups. Therefore, in the study of concrete injustices, they will be selective in ways different than other sciences like psychology. There are as many different ways to capture and understand experiences of injustice as there are types of inquiry. This pluralism is a strength of pragmatism, one that sets an inclusive framework that supports interdisciplinary and cooperative research about problems of injustices. What the philosopher provides is the critical perspective needed to help inquirers from different disciplines avoid reductionism and other common mistakes by reminding them of their particular biases. However, the pragmatist approach is even more radically open with regard to the evidence it can draw on in its designation and diagnosis of problems of injustice. It isn’t restricted to the evidence of any particular academic discipline; neither is it restricted to the evidence that is gathered and validated via the academic disciplines, full stop. Among the experiential resources that pragmatism can draw on are also autobiographical texts, narratives, and stories that the Eurocentric paradigm of knowledge and science often discard as irrelevant, as fiction, or art. For example, Gloria Anzaldúa’s Borderlands / La Frontera (1987) is a first- person autobiographical account of multiple forms of oppression suffered by Mexican Americans growing up in the border. Without the stories of different oppressed groups, academics would lack the resources needed to begin to understand the complex experiences of oppression as they are lived and the structural constraints as they are experienced in everyday lives. By explicitly holding a broader sense of the “empirical,” Anderson’s view could have avoided some of the objections that have been raised since the publication of her book. More than one commentator has raised questions about whether a privileged, white scholar like Anderson is too removed or out of touch with the Black community’s experience to be able to offer a reliable inquiry about their experiences of injustice. Paul Taylor, for example, writes, “Anderson endorses the Deweyan thought that social and political philosophy needs to be grounded in an empirically adequate understanding of the problems we face. But Dewey never tired of explaining that empirical adequacy had to do with experience in all of its existential and phenomenological depth” (2013, 201). And V. Denise James has argued, “my deepest concern [about Anderson] is rooted in another of classical Deweyan pragmatism’s central claims that our work should attend to and get not only data from, but also be interpreted
through, lived experience” (2013, 1). These are concerns about Anderson’s experiential basis for the knowledge that she has produced. To be sure, the view that just because an inquirer is a member of a privileged group (e.g., a white intellectual) she could not possibly produce reliable knowledge about the injustices suffered by the oppressed is an extreme and implausible view. But one could, and sometimes should, raise the question of whether an investigator’s position in her society may have in some way limited the experiential resources of her inquiry into an injustice. In the case of someone like Anderson, one can ask, beyond relying on the best social sciences, whether she considered other experiencebased resources that may have had an impact on the scientific research. One could ask, of course, the same questions about Black scholars who for some other reason, such as being academic intellectuals, may be too far removed from the same experiential resources. In the case of Anderson, what became a red flag for her critics was the simple fact that she did not realize that the term “integration” has many negative connotations in Blacks’ lived experience.3 Anderson’s personal distance from the problem of injustice in the lives of Blacks may not invalidate her conclusions, but it raises the question of whether she missed experiential data obtainable via other means, such as a cross- racial dialogue about the very causes of the problem. There is in Anderson’s work an oversight; that is, she does not acknowledge other sources for inquiry. She may reply that the only sources of knowledge she needs are the causal mechanisms reproducing undemocratic and unjust race relations as they have been revealed by studies in the social sciences. But even these studies are limited if they are too far removed from and not sensitive enough to the particular experiences, daily struggles, and circumstances of particular communities and situations in the United States. Pragmatism’s Methodological Warnings to Contemporary Nonideal “Empirical” Approaches The pragmatist approach to problems of injustice can be distinguished by its starting point and its broad view of empirical inquiry. There is in this view a demanding commitment to be sensitive to the uniqueness and complexity of the problematic contexts that trigger inquiry. However, does pragmatism provide more specific lessons or directives that can be useful for today’s nonideal theorists in their efforts to provide a better alternative to traditional ideal theories in addressing problems of injustice? First, pragmatism issues the warning to contemporary nonideal theories not to take for granted that their approach is “empirical” simply because they are critical of ideal theories or because they have the intention to be empirical. Theories and categories, no matter how empirically grounded they may seem by virtue of the fact that they are grounded in history or science, can function as “blinders” in our efforts to capture and resolve concrete injustices. Second, while Dewey provided no infallible method by which one can guarantee success in the empirical method he proposes, he would suggest that nonideal theorists learn from other philosophers’ mistakes. In this respect, Dewey’s occasional efforts to summarize the general and systematic kinds of mistakes nonempirical philosophers tend to make can prove helpful. Specifically, he identifies a series of methodological fallacies that nonideal theorists would do well to avoid. Dewey formulated different ways in which philosophers have made the same basic mistake, which is the tendency to begin with reflective products or theoretical abstractions, as if there is no prior nontheoretical problematic context. Hence, Dewey concludes that “the most pervasive fallacy of philosophic thinking goes back to neglect of context” (LW 6:5). I will sort out how the different versions of this fallacy have made their way into sociopolitical philosophy, in particular, in philosophical inquiry about injustice. While these fallacies are more common or even to be expected from ideal theories, it is worth demonstrating that nonideal ones are not immune from them either. The Fallacy of Unlimited Universalization When philosophers ignore the fact that judgments arise out of limiting conditions set by the contextual situation of particular inquiries, they tend to elevate the conclusions of their inquiries to the point of giving them unlimited application. Philosophers are prone to this fallacy because they are the ones who are usually trying to formulate theories about truth, good, justice, or the absolute, writ large. In many instances of this fallacy, “It is easy and too usual to convert abstraction from specific context into abstraction from all context whatsoever” (LW 6:16). Dewey was aware of how abstract conceptions such as justice, freedom, and democracy have been used by intellectuals and politicians to ignore or divert attention from the concrete social problems in need of our intelligence. However, he was also aware of how the categories of nonideal theories, while seemly empirical, may have the same effect. In fact, one could argue that these categories are more pernicious since they foster the illusion of empirical grounding in solving problems. Rationalist philosophers are not the only ones liable to forget the instrumental and context- bound character of their abstract conceptions. Political philosophy inspired by sociology often focuses on broad universal-general abstractions (categories) such as the state, individuals, groups, society, capitalism, racism, [and] white supremacy, oppression, structural racism, and the people, even though in the end there are only particular and unique instances of all of these categories in a situation at a particular time and place. To be sure, abstractions, generalities, and universal concepts have a legitimate function in inquiry. They are “tools” to be employed and tested in clarifying concrete social problems. The danger is when intellectuals (especially philosophers) tend to forget both the proper function of these tools and the details of concrete particular contexts. When this happens, they impose their theoretical abstractions upon particulars and oversimplify their empirical complexity. But the concrete troubles or evils that provoke our philosophical inquiries are situation specific and often far more complex than our intellectual analysis may suggest. The failure to recognize this specificity and complexity is an oversight with serious consequences, especially reductionistic, oversimplified, and one- sided solutions to serious social problems. This oversight also tends to generate among academics theoretical problems that are based on false oppositions among their abstract conceptions, which are barriers to continuing inquiry. In this regard, Dewey mentions debates about individualism and collectivism, but today, examples include debates about whether race, class, or gender is the key cause of an injustice. Anderson seems to be aware of the same danger with abstract conceptions when she replies to the charge that she disregards capitalism and white hegemony in her analysis of racial injustice in the United States. She replies that these concepts are “too lumpy to do the practical work non- ideal theory needs” (Anderson 2013, 4). She would not mind “white hegemony” if all it means is “the entire interlocking and mutually reinforcing set of mechanisms that reproduce systematic black oppression today” (2010, 16). But the concept is one that covers in broad strokes a lot of history across time and place when nonideal theory should be more meticulous and focused on more specific problems of the here and now. She claims that nonideal theory “demands splitting, not lu
mping” and should be committed to being “meticulous and precise in differentiating the variety and interaction of discrete causal mechanisms underlying the problem at hand” (2013, 4). This resonates with Dewey’s metaphilosophical standpoint, but given Dewey’s starting point (his radical particularism and contextualism), he would wonder if Anderson’s view is immune to the same danger of “lumpiness” that worries her about others’ analysis of racial injustice. Anderson argues in The Imperative of Integration that, even though the United States may have legally abolished segregation, de facto segregation is worse; it is the cause of racial injustice. Her solution is that we must integrate in all areas of social life. From Dewey’s perspective, Anderson should recognize that her use of “segregation” and “integration” may be as susceptible to the same dangers as “white supremacy” or “capitalism”; they are all abstract concepts that, while useful, may sometimes cover over or lump together too much. Even if one can theoretically discriminate the same general structural cause across cases of racial injustice, there is no single cause called “segregation.” Segregation is experienced differently in a variety of complex and unique injustice events. Without this qualification, one runs the risk of lumping all cases together under one name and even disregarding other causes that may be operative in an inextricable way in a problematic situation. Even the specific mechanism of segregation that Anderson identifies varies depending on what other contextual conditions are present in different areas of the United States. In inquiry, simplicity or lumping in the diagnosis by means of an abstract concept usually results in an answer or solution that has the same, simplistic character. In Anderson’s case, the solution is integration. To be fair, Anderson does provide plenty of differentiation in the variety of multiple strategies needed to undertake the problem. But nonideal theorists must be careful not to forget that behind a single conceptual handle there is a plurality of means depending on the particular problem. The temptation to seek and want a single cure under a single name has to be one of the most common temptations in any inquiry about injustice, and nonideal theorists are not immune from this. The Analytic and Selective Fallacies When inquirers forget their intellectual dissections, they commit the analytic fallacy. When they forget that evidence of their intellectual dissections indicates that they have been selective from the original subject matter, it is called the fallacy of selective interest. The analytic and selective fallacies are for Dewey two facets of the same general tendency to neglect context, and they are counterproductive in ameliorating concrete problems. Let us consider how they can undermine inquiries about injustice. Anderson claims that “Non- ideal theory demands splitting, not lumping” (2013, 4). She is, of course, correct. However, the analytic fallacy represents a way of splitting that is undesirable from a pragmatist point of view. Analysis is that process where we discriminate some particulars or elements within a context. Of course, what hangs those particulars together, i.e., what gives them their connection and continuity, is the context itself. Philosophers commit the analytic fallacy when “the distinctions or elements that are discriminated are treated as if they were final and selfsufficient” (LW 6:7). Philosophers, as a result of their analyses (e.g., as a result of adopting historical accounts and scientific studies), have provided a diagnosis of a particular injustice. For instance, Anderson has shown that inquiry can result in a meticulous and precise differentiation of “the variety and interaction of discrete causal mechanisms underlying the problem” of racial injustice (2013, 4). This is as it should be. However, the danger comes when inquirers neglect or forget the concrete, integral contexts from which things were dissected in the first place. They may then invent artificial, intellectual problems that center on how the variety of causal mechanisms discriminated (analyzed) can be brought together or unified, or, what is more likely, engage in endless debates about which among the plurality of diagnoses is the correct or “real” one. However, these causal mechanisms (after inquiry has formulated them) are not antecedent to the concrete problem, nor can the problem be reduced to their intellectual analysis. Nonideal theorists must also guard against committing the related fallacy of selectivity. Different types of inquiry will discriminate different causal mechanisms underlying the same problem because each is selective in some way. Pluralism of diagnoses about the same problem of injustice is not problematic unless, by failing to recognize selectivity (i.e., ignoring context), we postulate some ontologically or epistemologically privileged access or approximation to some antecedent “reality” of the problem. When we forget or overlook the unavoidable selectivity of even our best theoretical tools, we run the risk of becoming complacent in the belief that our accounts exhaust all of the causes in the case, or we may proclaim it as the “real” cause and anything else as illusory. Anderson is correct in that ideal theories tend to overlook or ignore concrete injustices like racism. This is a function of their starting point, which is unreasonably, and some may argue, suspiciously, selective. But even the best nonideal “empirical” views will be selective as well, for, as Dewey says, “there is selectivity (and rejection) found in every operation of thought” (LW 6:14). Pragmatism, however, does not think that admitting or embracing selectivity means that all selectivity is equally good or equally distortive (i.e., biased or partial) with respect to an antecedent reality. Standpoints and perspectives are not things that stand against a uniform and antecedent reality of a problem of injustice. While selectivity is unavoidable, there are usually contextual grounds, depending on the nature of the problem, for distinguishing better from worse selections in a situation without the need to presuppose an Archimedean standpoint or privileged epistemic access by some group or person. For pragmatism, all selectivity or bias in inquiry has both a positive and a negative aspect. The positive is that it makes available for inquirers aspects of a concrete problem that someone without that particular bias would not have experienced or appreciated. The negative is that no matter how productive our bias is, one may have left out something from the concrete problem that has not been disclosed by our tools of analysis. In other words, the particular forms of selectivity that we bring to an inquiry account both for our limitations and for our particular power- capacity to inquire and ameliorate the problem. The particular selectivity that we bring to an inquiry into a problem of injustice can have different sources. We would do well to distinguish two broad categories of selectivity or bias: theoretical ones (of the type of inquiry) and pretheoretical (of the investigator).
Single payer health insurance instantiates a world in which quality of healthcare is not determined by financial status and eliminates profit motives that contribute to disparate outcomes. This dramatically improves lived conditions for millions of people and reduces premature death
David A. Ansell 17. Senior Vice President for Community Health Equity, Rush University Medical Center, Associate Provost for Community Affairs, Rush University, social epidemiologist and author. 2017. The Death Gap: How Inequality Kills. University of Chicago Press. CrossRef, doi:10.7208/chicago/9780226428291.001.0001.
The US healthcare system provides unequal care. Just as life expectancy is determined by which neighborhood you live in, for many Americans what hospital or doctor you can see is influenced by neighborhood, insurance, race, and ethnicity. And if you live in a high-mortality neighborhood, a trip to the local hospital might just be a matter of life and death. There are three major reasons why health care delivery in the United States is not equitable. The first is that health care is treated as commodity, not a right. The poor (with or without insurance) living in neighborhoods of concentrated disadvantage often have more limited access to quality health care.2 Those who are uninsured and underinsured experience great difficulty accessing needed care.3 Minorities and the poor are less likely to have private health insurance than white middleclass Americans.4 When minorities and the poor do have insurance, it is more likely to be one of the publicly funded insurance policies that not all hospitals and doctors accept. The second reason is that minorities sometimes get different treatment for the same illness from what whites get, regardless of insurance. Health care providers’ implicit racial bias and patients’ mistrust may be the causes of this differential treatment.5 The third reason why health care delivery is unequal is that the health care institutions that serve the poor in general suffer from cash and capital shortages. Neighborhoods of concentrated advantage where people with better insurance live have better-resourced hospitals and clinics than poor neighborhoods do. This is how structural violence works within the fabric of the health care system. It is not as if great care cannot be delivered in underserved settings. It is, every day. But it is inconsistent or constrained by a lack of resources. Thus minorities and poor people die disproportionally as a result of an unfairly structured American health care system. The Deadly Divide Take breast cancer care. It is a gruesome fact that in the United States, black women are 40 percent more likely to die from breast cancer than white women. While black and white American women now develop breast cancer at the same rates (something that was not always the case), more black women will die of the disease.6 Why does this particular death gap exist? An oncologist will tell you that black women first seek treatment with larger, more deadly, laterstage breast cancers.7 But the truth is that the breast cancer death gap is not just a biological phenomenon but a consequence of structural violence. A woman’s neighborhood can determine whether she will survive breast cancer or die from it. It would be grisly enough if breast cancer were the only disease that discriminated. It is not. From heart disease to hepatitis C, depression to diabetes, blacks throughout the United States suffer higher rates of illness and death than whites. It is tough to name many diseases that do not discriminate by race, place, and poverty. But breast cancer is a disease that demonstrates vividly how structural violence is woven into neighborhood fabric, especially in black communities. The Missed Breast Cancer The key to unlocking the inequity in breast cancer mortality came from a radiology reading room on the top floor of Mercy Hospital on Martin Luther King Jr. Drive on Chicago’s South Side. The room was dark except for the projected image of a mammogram. Amid the cool gray background of fatty breast tissue was an unmistakable irregular-shaped mass, its speculated white tentacles invading the surrounding tissue— a telltale sign of advanced breast cancer. It was as obvious as a ticking bomb. Dr. Paula Grabler, a radiologist specializing in reading mammograms and diagnosing breast cancer, was then the director of breast imaging services. At most of the other small hospitals that served South Side African American communities, mammograms were read not by specialists but by general radiologists. Too often cancers were evident but missed. This case was no different. “She was a middle-aged African American woman,” Dr. Grabler recalled.8 “The patient had been seen in the past at a small South Side hospital and had a screening mammogram that was reported to be normal. Months later she came to me with a lump in her breast. I asked to get a copy of the prior mammogram and there it was: a large, very obvious breast cancer.” Grabler typically removes mammograms from the view box when she meets with patients. She does not want the image of the cancer to shock the patient. “But on this particular day, I forgot to,” she said. The patient gasped when she saw the large white mass that exploded from the gray background of the x-ray. “How did they miss it?” she asked. It was a glaring mistake that could cost her her life. “I honestly don’t know,” Grabler replied. But she did know. The doctor who read her mammogram was not an expert. He was an itinerant radiologist who read all types of x-rays. Detecting breast cancer early requires meticulous attention to detail. Trained experts who read mammograms find six times more breast cancers than general radiologists do.9 In Chicago, most of the breast centers that are near or in the black wards do not have such specialists. Cancers are missed. Women die. An obvious breast cancer on a mammogram. The patient presented with a lump in her breast; the prior mammogram had been read as normal. Sometimes the cause of racial disparities in health care can be as banal as an inexperienced or busy doctor missing cancer. Source: authors personal collection. That missed breast cancer held the key to understanding an aspect of premature mortality: access to screening is important for finding breast cancer early—but the quality of that screening is even more critical. We found a screening facility serving Chicago’s black community that found two breast cancers for every thousand women screened, when the correct number should have been at least six.10 More than half were missed. Add to this injury the insult a black woman feels later when she goes to see a doctor with a bad cancer and is told that her genetics are at fault. Institutional racism as a structural cause of increased mortality can sometimes be as banal as a poorly qualified doctor missing a cancer in a poorly run mammography center. In a Chicago study of missed breast cancers, poor women, minority women, and publicly insured women were significantly more likely than well-insured white women to have their cancers missed (they were there on the mammogram on a lookback.)11 Socially disadvantaged women (poor, minority, and uninsured) are significantly more likely to have a cancer missed on mammography because they are more likely to receive care at substandard facilities, in segregated neighborhoods, than advantaged women are.12 Even if women of color do everything right—get screened, schedule follow-up appointments—they can still fare worse than white women simply by virtue of where they live. This is not just a product of poverty, though poverty itself is a big predictor of inequity. There are plenty of poor white women in Chicago, but there is not one poor white Chicago neighborhood.13 Poor white women can get their breast care in the same neighborhood hospitals as the more wealthy women in their neighborhoods. This is structural violence and institutionalized racism at work. Women living in Chicago’s neighborhoods of concentrated advantage are 37 times more likely have ready access to a “breast center of excellence” than women living in high-poverty neighborhoods.14 This maldistribution of resources did not occur by chance. The Spread of Racial Disparity None of this mattered when there were no effective treatments for breast cancer. From the mid-i930S, when breast cancer mortality was first measured in the United States, until the early 1980s, when screening mam
mography and new chemotherapy agents were shown to be effective at reducing mortality, there were no black-to-white or rich-to-poor gaps in breast cancer mortality.15 But in the early 1990s, as breast cancer became more amenable to new treatments, the breast cancer death rate for white women across the United States began to plummet.16 The death rate for black women in Chicago did not budge.17 The improvement for white women was easy to comprehend. Years of effort to raise awareness about the importance of regular mammography screenings coupled with improvements in technology and the emergence of specialists like Grabler meant that more cancers were detected early. Meanwhile, advances in treatment further increased survival rates. But it was here that a new racial death divide emerged. It grew from a sliver to a chasm over the next twenty years. Poor women, and specifically poor black women, were not getting the same quality of breast cancer care as wealthier and white women. Researchers have described this growing racial gap in cancer mortality as the “amenability factor.”18 As cancers such as breast cancer become more amenable to treatment interventions, racial cancer survival disparities widen because poor minority women do not have easy access to the lifesaving cures.19 Inequality in Quality In 2007,160-plus doctors, researchers, and community activists in Chicago convened the Metropolitan Chicago Breast Cancer Task Force to investigate the gap and decide how to close it. We analyzed the data. We drilled into the deaths. We held focus groups of black and Latina women on the South and West Sides. We heard their stories of fragmented and disrespectful health care in their communities. We released a report.20 It confirmed that access to quality of care was responsible for the wide racial gaps in breast cancer mortality. The report also made thirty-seven recommendations for closing the gap. Yet breast cancer researchers scoffed. They clung to the usual genetic and biological explanations. We fought back, pointing out the structural components of the death gap, both in Chicago and nationwide. Chicago’s gap was twice as large as the national gap and seven times larger than the gap in New York City, suggesting that geography is a significant variable.21 Cities like Memphis and every major Texas city had even larger breast cancer death gaps than Chicago’s.22 In Detroit, black and white women had the same terrible mortality rates. The cities with the greatest breast cancer death gaps were also the ones with the largest dissimilarity index scores, denoting advanced degrees of racial segregation.23 Moreover, biology cannot explain the variability in the racial death rates in cities within the same state. For example, in Los Angeles black women are 71 percent more likely to die from breast cancer than whites. In Sacramento and San Francisco this gap does not exist.24 A Map and a Story The task force published a map of Chicago showing the communities with the highest breast cancer mortality. Twenty-three were black communities and one was white. All were located on the West and South Sides. All the black communities were neighborhoods of concentrated US Health Care: Separate and Unequal * 119 Years Disparity ratios in breast cancer mortality between white and black women across New York City, the United States, and Chicago from 1990 to 2010 show that geography, more than biological and genetic factors, influences womens mortality. Source: Metropolitan Chicago Breast Cancer Task Force. poverty and disadvantage.25 In mostly black neighborhoods, not one hospital has earned the American College of Radiology’s seal of approval for breast imaging centers. Only one hospital in a high-mortality black neighborhood has been certified by the American College of Surgeons’ Commission on Cancer as a cancer treatment center. In contrast, in the white wards there are fourteen cancer accredited hospitals. This was a bleak picture of the structural nature of racial inequality. It’s one thing to look at disparity on a map. It’s another to hear from the women who try to navigate the fractured system of care. Chicago and other cities have a hodgepodge of public and private hospitals and clinics, with little communication between them and poor coordination of care. Barbara Akpan is a retired nurse in Chicago. After her breast cancer diagnosis and treatment at an academic medical center, she began serving as a volunteer community advocate for other African American women on the South Side. Her observations reinforce the notion that inequality in the quality of breast cancer care was failing women. “Many of the women I work with are afraid,” she said. “They do not trust the health care system. Many of the clinics and hospitals they go to do not provide the best care, or they simply give them the wrong Hospitals with American College o f Surgeons Approved Cancer Programs African American Community Areas with Elevated Breast Cancer Mortality In Chicago’s African American neighborhoods with high mortality for female breast cancer, there are few hospitals with American College of Surgeons-approved cancer programs. Consequently, black women with breast cancer concerns have to either travel for care or receive care at nonapproved cancer treatment sites. This map depicts how health inequality is structured into the geography of a region. Source: https:// link.springer.c0m/article/10.1007/s10552-009-9419-7. information. It’s hard to overcome the mistrust. For women in the southland—Ford Heights, Chicago Heights, Harvey, poor areas on the South Side—access to mammography screening sites is really poor,” says Akpan. “Women are falling through the gap—they don’t know where to go.”26 When we traveled around Chicago and other cities, showed audiences of black women the mortality curves illustrating the black breast cancer death gap, and gave our explanations, they cried. We had validated something they knew to be true: the systems that served them were often inadequate. They cried because our data told them that the breast cancer death gap was a system problem and not a problem within black women. Their reactions galvanized us to focus on fixing the system. Because the mortality gap was structural, we needed hospitals to work together to improve care for black women. We identified hospitals with undertrained mammography technicians and radiologists and arranged free continuing-education courses. We met with CEOs to share their hospital’s quality data and make recommendations for improvement. But this was not going to improve care fast enough. If a small inner-city hospital lacked the expertise to provide comprehensive breast cancer care, no amount of quality improvement would remedy it. But what if we could move women from poor institutions to good ones? Navigating to Quality We hired health “navigators.” These were community health workers and nurses who could direct women to high-quality hospitals for screening and treatment. We solicited breast cancer services from all the region’s top hospitals. Most obliged. The navigators guide their clients into care at the city’s highest-quality medical centers even when they are two hours and two bus transfers away. Sometimes the navigators battle with the local doctors to wrest the patient into better care. Gerri Murrah is typical of the patients navigated. She was 60 and developed a sore lump in her breast in 2015. Not having a primary-care physician, she had gone to her local emergency room. The doctor didn’t even consider cancer; Gerri was given antibiotics and sent home. Luckily, Murrah knew something was wrong and went to a different clinic and requested a mammogram. The results were suspicious. Murrah was assigned to a surgeon at a neighborhood hospital. This surgeon, not a breast specialist, made two bungles: Instead of doing a needle biopsy, he surgically removed the lump—a painful and unnecessary procedure. Then, without informing Murrah of the stage of her breast cancer (stage III), he recommended an unneeded mastectomy. When DeShauna Dickens, one of the task force n
avigators, finally connected with Murrah, she referred Murrah to the University of Chicago Hospital for a second opinion. There, Murrah learned she had other options that would preserve her breast. “DeShauna came in just in time to stop me from having my breast cut off,” she says, in an O, the Oprah Magazine interview.27 There are setbacks. Not all women respond. Not all institutions have the will to better their conditions. Some facilities were deplorable, such as the mammography facility in the Washington Park neighborhood’s Provident Hospital, which the task force staff visited in 2014. The room that was used to develop mammography films had a sewer manhole cover in the middle of the floor and was suffused with noxious sewer fumes. The path to improve quality and reduce mortality can be slow and painful. The Breast Cancer Quality Consortium Yet progress has been made. The grassroots team persuaded 160 health care providers across the state, including every Chicago hospital, to share their data, such as tumor detection rates and follow-up rates. Slow improvements in quality were made even in the poorly performing hospitals. In 2013, after seven years of work, the black-white breast cancer death gap in Chicago had narrowed by 35 percent.28 While the exact reasons for the improvement in the mortality gap are not easy to tease out, in no other metropolitan area of the United States has that death gap been reduced. The reduction in black breast-cancer deaths in Chicago shows that mortality inequities caused by structural violence are fixable. Focused and deliberate work directed at equalizing the health care system can save lives. Racial disparity can be reduced— and possibly eliminated. “We don’t need a magic bullet to fix this,” says Dr. Patricia Ganz, a member of the Breast Cancer Research Foundation Scientific Advisory Board and professor of medicine and public health at UCLA. “We just need to give black women the same standard of care.”29 Implicit Bias Contributes to Unequal Care While the story of the Chicago breast cancer death gap has had early success, in too many areas and on too many levels we are still dealing with the most basic inequities and prejudices. Bias, even if unconscious, affects individual physicians and their treatment decisions. This is unsettling but true. While most doctors do not exhibit explicit racial bias, such as refusing to treat certain patients because of their race, on tests of implicit bias they, too, show unconscious preferences for whites over dark-skinned faces. The Implicit Association Test is a widely used test of social cognition. More than 70 percent of the millions of Americans who have taken it exhibit a subconscious preference for whites over blacks.30 Physicians score similarly. An ingenious 1999 experiment showed how unconscious bias affects clinical decision making. Thousands of doctors were asked to test their clinical acumen by reviewing the medical history given by a performer who acted out the symptoms of a potential cardiac syndrome on film.31 There were eight elderly patients. Four were men: two white and two black. Four were women: two white and two black. Physicians were asked to recommend a cardiac workup based on the clinical information the patients relayed. In addition, physicians were told whether the patient was insured or uninsured. The results were not surprising. Based on the gender, race, and insurance status of the patient, doctors recommended entirely different medical workups. Men of both races were more likely to be referred for angiograms to evaluate symptoms of chest pain. But blacks of both genders were less likely than the whites to be referred for the full cardiac workup. Those who were noted to be insured were more likely to be referred for a full workup as well. While this was an experiment and not real clinical care, unconscious bias in health care delivery seems to be a real phenomenon. In an eye-opening 2002 report on health care disparities, the Institute of Medicine found “strong but circumstantial evidence for the role of bias, stereotyping, and prejudice” in perpetuating racial health disparities.32 Some research suggests that there is a direct relationship among physicians’ implicit bias, mistrust on the part of black patients, and clinical outcomes.33 In a prospective study of older adults, patients who experienced discrimination in health care more than once yearly were twice as likely to have a disability four years later than cohort members who suffered no discrimination.34 What needs to be done to address implicit bias in medicine? Awareness is a start. Mandatory bias testing and cultural intelligence training have been proposed. But it requires day-to-day interactions between people of different backgrounds to break the implicit boundaries that prevent deeper understanding.35 And that’s necessary, but fair. But bias is only a piece of the story. Having No Insurance Is Bad for Your Health Another major factor driving inequitable care is lack of health insurance. Uninsured adults are far more likely than those with insurance to postpone or forgo health care altogether. Twenty-five percent of adults without coverage say that they went without care in the past year because of its cost, compared to 4 percent of adults with private insurance coverage. Moreover, 55 percent of uninsured adults do not have a regular place to go when they are sick or need medical advice.36 When uninsured patients get injured or develop a chronic disease that requires follow up, they are less likely than those with coverage to actually obtain all the services that are recommended.37 Blacks and Latinos are more likely to be uninsured than whites, which only increases the burdens of health care inequity borne in neighborhoods of concentrated poverty. Prior to the Affordable Care Act, an estimated 45,000 residents died each year due to a lack of insurance, or one person every twelve minutes. If being uninsured was a cause of death, it would be the tenth most common one in the United States.38 The next chapter will deal further with the issue of health insurance. Apartheid Hospitals Once people do get insurance, there is no guarantee they will get good treatment. As Nobel Prize winner Angus Deaton has noted, “Hospitals in the United States are run on something close to an apartheid basis with few white patients in the hospitals that treat mostly African Americans and vice versa.”39 Hospitals in which the majority of patients served are minorities have higher mortality rates across the board, whether from trauma, cardiac surgery, or general surgery procedures. In fact, as the percentage of minority patients served increases at an institution, so do the mortality rates across many conditions. There seems to be a direct correlation between the proportion of minority patients served by a hospital and death rates.40 Take trauma care as an example. Trauma centers that serve mostly minority patients have higher mortality rates than those that serve mostly white patients. There is a gradation of trauma mortality based on the percentage of minority patients served by the trauma center. Those trauma hospitals with fewer than 25 percent minority patients have 60 percent better trauma survival rates than trauma hospitals with more than 50 percent minority patients. Hospitals with 25-50 percent minority patients have trauma mortalities in between the two.41 Why would this be? Trauma centers require specific levels of physician and other staff coverage, and they require periodic rigorous certification. Shouldn’t this attention and regulation lead to better care, regardless of race and ethnicity? There are only two possibilities. One is that trauma severity or high-risk conditions are more prevalent among patients in institutions that serve mostly minorities. However, even when severity of illness is controlled for, minority trauma centers have 37 percent h
igher mortality rates than those serving mostly whites. The other possibility is that the care is actually unequal. I have shown how this is true for breast cancer care. It seems to be true for many conditions. What hospital you attend is literally a matter of life and death. In general, hospitals and clinics where many minority patients receive care are lower quality than those that serve white populations, whether for medical or surgical conditions.42 Further, hospitals treating a higher proportion of black patients have higher mortality rates for many surgical procedures. In addition, these hospitals have higher mortality rates independent of race: both black patients and white patients have higher mortality in hospitals with mostly black patients than their racial counterparts in other centers.43 The federal Center for Medicare and Medicaid Services recently created a national star ranking system for hospitals, to allow consumers a means to assess hospital quality. A hospital can be ranked from five stars to one star, with five stars denoting a very high quality hospital with lower mortality and one star being a low-quality hospital with high mortality.44 In practice, star rankings vary by the whiteness of the hospital’s clentele. Five- and four-star hospitals in America serve patient populations that are predominantly white. One- and two-star hospitals in America serve predominantly minority paitients and very few whites. This is true for care at clinics as well as hospitals. The doctors who work at clinics that care for predominantly black and other minority populations are less likely to be board certified, have less access to specialty consultation, and work in more chaotic conditions. It is not a matter of the patients’ race or ethnicity. Hospitals and clinics in poor neighborhoods, those that serve uninsured populations or those on Medicaid, often do not have enough resources to provide the very best care.45 What seems at first blush to be a racial disparity is actually a consequence of structural violence and institutionalized racism. Just follow the money. Let’s compare the cash situations at two Chicago hospitals, both trauma centers. During my decade at Mount Sinai Hospital, located in a low-income black neighborhood, 20 percent of the patients had no insurance. Another 60 percent had Medicaid. The patient population served is virtually 100 percent black and Latino. If a white person happens to be hit by a car down the street from Sinai, then they might be brought there. Otherwise a white patient, or anyone who is well insured, would rarely set foot inside Sinai. Then there’s Northwestern Memorial Hospital. One of the top hospitals in the United States, on the US News and World Report Honor Roll, it towers over Lake Michigan about five miles from Sinai, in Chicago’s predominantly white Streeterville neighborhood. It has an A bond rating, and about 500 days of cash brimming in its accounts. This translates to $2 billion in bank reserves. Most of Northwestern’s largely white patient population has private insurance. A small number are uninsured. During my time at Sinai, there were often only a few days of cash on hand. Sinai had no bond rating—meaning no bank would lend it money for capital investments. Just as Lawndale had been redlined seventy years prior, Sinai and other hospitals that serve poor communities are redlined by the banking industry today, limited in their ability to borrow. Sinai has been an anchor in the Lawndale neighborhood since 1919, and it takes care of everyone who comes to its doors, regardless of ability to pay. The price of this noble mission is a hospital’s equivalent to a vow of poverty. From a banker’s perspective Sinai is a bad investment. Compare Northwestern and Mount Sinai’s spending on capital in 2012. Capital dollars reflect the amount of money that a hospital has to spend on patients, doctors, equipment, and upgrades. Northwestern spent $273 million on buildings and equipment. Sinai spent just $6 million.46 The failure of capital markets to support Sinai contributed to its chronic struggles to maintain service quality. If we really want to achieve equity in health care outcomes, then we have to invest more into the institutions serving those who need care the most, like Sinai. This means redistributing capital dollars based on need from Northwestern and its neighborhoods to invest in Sinai and its Lawndale neighborhood. This is just the opposite of how the American health care system works. In America we have arranged it so those who need it the most (often black people and other minorities) get less, while those with the most (white and affluent people) get the best care and facilities available in the world. It is no surprise that life expectancy in Northwestern’s neighborhood is 85 years. In Sinai’s neighborhood it is 72 years.47 Failure to Rescue When it comes to providing the highest quality of care, volume matters. The doctors and the nursing staff who are exposed to high volumes of particular kinds of cases have more time to hone their skills, and this leads to better outcomes. A surgeon who does liver transplants every week is better at them than one who does one per year. As for complex surgical conditions where high volumes of cases are crucial to achieve the best outcomes, nonwhite patients are more likely than whites to receive them at low-volume institutions. These patients are also less likely to be rescued if they deteriorate postoperatively. Procedural complication rates are exactly the same at high-mortality and lowmortality hospitals. So what is the reason for the death gap? The answer is culled failure to rescue. When a sick patient gets a complication, the doctors and nurses have to recognize and treat it—that is, rescue the patient from dying. Hospitals with well-developed systems to recognize complications and rescue patients have lower mortality.48 While all the components of rescue have not been identified, adequate nurse staffing and training is critical. The hospitals with the least capability to rescue—due to nursing shortages, lack of training opportunities for staff, or other factors—serve significantly more minority patients and suffer higher mortality rates.49 Truth or Consequences Cardiac surgery at Mount Sinai Hospital is an example of a low-volume and high-mortality program. Its struggles are instructive for understanding the day-to-day decisions in a poor hospital and how they lead to health inequities. When I worked there, the heart surgery program was small—about fifty cases each year. Programs this small have trouble maintaining quality because there is not enough repetition for all the staff who need to be in top form. In addition, because the capital investments required to maintain the service were so high, Sinai managers thought the limited capital we had should be invested elsewhere. So we closed the program and partnered with a nearby, higher-volume academic medical center (University of Illinois) to take our patients. It made sense. The neighborhood did not need a small, poorly functioning heart-surgery program. Then one day we had a patient in the cardiac-care unit with three blocked coronary arteries. He needed emergency bypass surgery. Our cardiologists inserted a special pump into his aorta to boost to his failing heart until lifesaving cardiac surgery could be performed. Time was critical. But the patient was uninsured, and the University of Illinois refused the patient. In desperation I phoned the chief of cardiology there. He recommended that the patient be discharged from Sinai and instructed to walk into the University of Illinois emergency room. Then, he said they would be required to treat him. I was shocked. Not only was this immoral, but it was medical malpractice. The patient was hooked to life support, teetering on the edge of death with an artificial heart pump attached to a blood vessel in his groin. Without surgery soon he would surely die. It took a call from our CEO to U of I’s CEO to get this patient transferred. After this event, against their better jud
gment, our cardiologists urged our CEO to restart cardiac surgery at Mount Sinai. Despite the low volumes, inability to guarantee quality, and high capital costs, it became a necessary investment. These are the choices faced by safety- net hospitals in communities of concentrated disadvantage. Provide nothing and let patients die from neglect; or provide the best care you can, at risk of higher than desired mortality, and hope to pull most patients through. More broadly, a 2014 study evaluated cardiac-surgery mortality in patients insured by Medicare. Nonwhite patients succumbed at a 33 percent higher rate than whites (after risk factors were controlled for). Thirty-five percent of the death gap was due to deficiencies in hospital quality. The highest-mortality hospitals were those that served predominantly minority populations. Both white and black patients who received their heart surgery at predominantly minority hospitals had higher mortality rates, suggesting structural factors were responsible. When we speak of institutionalized racism as a structural cause of premature death, it is not the virulent type of racism that we associate with opposition to the civil rights movement of the 1960s. It’s a more banal but deadly form of brutality woven into the tapestries of our institutions and thus harder to eradicate. I was not shocked by the study’s findings.501 knew that race itself—as a social marker—was not the reason for the cardiac mortality gap at predominantly minority hospitals; it was our tolerance for inequality in quality across our health care system. This becomes even more obvious when we contrast these findings with the outcomes in the Veterans Administration system, where care is structured the same way nationwide. In the VA system there is no equivalent racial heart-disease death gap.51 Inequality in Quality and Unequal Treatment It is not only in majority minority hospitals that black health-care inequities exist. When black and brown patients receive medical care in any setting, they are more likely than white patients to receive unequal care. This was documented in the Institute of Medicine’s shocking Unequal Treatment report, which synthesized hundreds of studies of age, sex, and racial differences in medical diagnoses, treatments, and health care outcomes. The report concluded that for almost every disease studied, black Americans received less effective care than white Americans. These disparities prevailed even among groups with identical socioeconomic or insurance status. Minority patients received fewer recommended treatments for diseases ranging from AIDS to cancer to heart disease.52 How much of the treatment gap is related to implicit bias, patient mistrust, physician practice style, or systematic organizational dysfunction is not known, but these gaps have persisted over the decade and more since the Institute of Medicine report.53 Each year since 2003, the Agency for Health Care Quality and Research has tracked progress on health care inequity across America, analyzing more than 250 quality measures across a broad array of settings and services. In the 2014 report, the agency reported no overall improvement in racial health disparities from prior years. Not one iota. The American Hospital Association Pledge In 2015, in response to years of intractable health care inequities, the American Hospital Association called upon CEOs of hospitals across America to sign a pledge to measure health inequities within their own institutions and to fix them. The Equity of Care Campaign to End Healthcare Disparities focus is on four areas. First, hospitals are to choose a quality measure that is important to their community. Next, they are to develop a plan to address a disparity, whether by race, ethnicity, or language preference. Third, hospitals are asked to provide cultural competency training for all staff or finalize a plan to do so. Finally, hospital operations teams are asked to initiate a dialogue with the board and leadership team about this disparity work.54 After over a century of documented health-care disparities, this step is important. But it is hardly enough. The nation’s hospitals have been organized for the most part to make money by attracting the best clientele with the best insurance policies. For most hospitals this means avoiding poor and minority neighborhoods. Those frayed and capital-poor hospitals that have made it their mission to care for poor and uninsured often struggle in poverty like their clients. Just as the neighborhoods of concentrated disadvantage were created by white and industrial flight and the expansion of neighborhoods of concentrated advantage, a similar phenomenon has occurred in health care. The nation’s wealthiest health care systems for the most part have avoided serving the residents of concentrated disadvantage by placing offices and hospitals only in white communities of advantage. So pledges are well and good, but without larger structural changes that level the insurance and capital decisions that underpin the health care system, health care equity will continue to be elusive. Only with national health insurance reform that begins with the idea of health as a human right could these structural issues be resolved. The Affordable Care Act, the most recent response to the need for health care reform, has tried to address these issues. However, as we will see, it has been an inadequate solution so far. HEALTH INSURANCE IN AMERICA You guys are evil. Canada’s the best country in the world. We go to the doctor and we don’t have to worry about paying him, but here your whole life you’re broke because of medical bills.1 J U S T I N B I E B E R It will not do to note that under the Affordable Care Act almost 90 percent of Americans currently have some form of health insurance, any more than it would do for a hotel to note that 90 percent of the time the roof over your bed does not leak when it rains.2 Of all possible ways to remedy structural violence in America, the creation of an equitable universal health-care system based on the idea that health care is a right, not a commodity, ranks high. While the health care law was a reform of the old system that saw fifty million Americans uninsured, the Affordable Care Act perpetuates health care inequity and fragmentation by its very design. Yet if Republican calls to repeal the law are heeded, we will be back to square one. And bad will revert to worse. I was not surprised that the solution for universal health care in the United States would be to prop up the existing costly, inequitable, and inefficient insurance system. In 2003 my wife and I cosponsored a fundraiser in Chicago for the then little-known Illinois state senator Barack Obama, who was running for the US Senate. In the living room of a modest single-family home in the neatly manicured South Shore neighborhood of Chicago, I asked the future president his position on national health-care reform. His words presaged what came to be known as “Obamacare.” “I’m a proponent of a single-payer system,” he responded. But he explained that the political power held by the health insurance companies was so formidable that opposing them would be political suicide. He noted that the insurance industry had over 250,000 employees across the country and a lobbying apparatus that had to be reckoned with in any drive for universal health care. “Single payer will never get passed in the United States,” he concluded. He was correct. Single payer did not even get a hearing. The Affordable Care Act was a modest reform of the existing tiered healthinsurance system, which treats health care as a commodity, not a human right. The coverage provisions in the Affordable Care Act built on and attempted to fill in the gaps in a piecemeal system that had left many without affordable coverage. There have not been impressive gains since the passage of health reform.3 A net of twenty million mor
e people gained health insurance coverage between 2013 and 2015. Medicaid has expanded in thirty-two states and the District of Columbia, providing new access to coverage to millions of previously uninsurable Americans.4 The Affordable Care Act has been successful in reducing the number of uninsured, but about 30 million Americans remain uninsured.5 Most important, the Affordable Care Act fails two critical parameters of health justice: it is neither universal nor equitable. Elegant, Equitable, and Not to Be The most elegant, comprehensive, fairest, and lowest-cost solution to the health care crisis would have been to expand and improve the Medicare insurance plan to cover all Americans.6 Medicare, enacted in 1965 as a single governmental payer system to provide health insurance for Americans 65 and older, has been well liked since its inception. Before Medicare, 48 percent of such Americans had no insurance; now only 2 percent are uninsured. In addition, before Medicare 56 percent of senior Americans paid out-of-pocket health care expenses, compared to 13 percent now.7 Satisfaction with coverage is substantially higher among Medicare recipients than for those who have private insurance. Only 8 percent of Medicare enrollees report their experience as fair or poor, compared to 20 percent of those with typical employer-based health insurance coverage and 33 percent of those who purchased private insurance directly.8 Moreover, the costs of administering the program are substantially lower than those of private insurance companies—only about 2 percent of the total cost for Medicare, compared to 12 percent for the least expensive insurance company’s overhead charges.9 Most important, experts estimate that since its inception Medicare has added five years to the life expectancy of older Americans.10 Polls have shown that universal government-sponsored health coverage is preferred by half of Americans.11 And an improved Medicare would be an entitlement available to all Americans, with the exact same benefits for the wealthy and the poor. Medicare for all would achieve the goal of universal access to health care. As an entitlement for all US citizens (and extended to noncitizen residents), access to health care would be a right. This would contribute to the improvement of the life expectancy gap between rich and poor. Plus it would save an estimated $400 billion yearly by eliminating administrative waste.12 So if one wanted to solve the problem of the uninsured and reduce the death gaps between rich and poor, expansion of Medicare with other enhancements would have been the most logical approach. This is not a radical idea. Thirty advanced industrialized nations have forms of universal health care.13 Canada has a “Medicare for All” health insurance with easier access to care, lower costs, and better health outcomes (including life expectancy) than those of the United States. The evidence is compelling. While health inequity has not been eliminated in Canada, the differences between poor and rich are not as striking as they are in the United States.14 In Canada, men in the poorest urban neighborhoods experienced the biggest declines in mortality from heart disease from 1971 to 1996.15 Life expectancy gaps between income groups declined during that period as well. Poor Canadians with cancer had better survival than poor people from Detroit, an outcome The Poison Pill: Health Insurance in America * 135 136 * CHAPTER TEN attributed to the Canadian system.16 Of all the major Western economic powers, the United States is the only one without a universal health care system in which health care is considered a human right.17 Rather than treating access to health insurance as a universal right, the language of the Affordable Care Act endorsed the idea that health care is a mandate.18 The difference between health care as a right and health care as a mandate is critical, as these conceptions lead to very divergent solutions. If health care is a right, universal health care is an entitlement that should be the same for all citizens. If health care is a mandate, however, then there is no such entitlement, and health care is a commodity to be bought and sold. The Affordable Care Act established the mandate as a core component of health care coverage, perpetuating the complex system of multiple payers, limited access, variability in quality of care, high costs, and large rich-poor life expectancy gaps. Obamacare and Beyond The 2010 Affordable Care Act remains the most significant overhaul of the American health care system since the passage of Medicare in 1965, expanding insurance coverage to millions. The law survived multiple attempts by Congress and two Supreme Court challenges that aimed to gut its major provisions.19 As a reform of the current for-profit insurance marketplace, the Affordable Care Act addressed two major gaps in the existing system. First, it allowed young adults to stay on their parents’ health insurance until the age of twenty-six—a popular provision that benefits almost eight million Americans.20 The second major reform prevented insurers from denying coverage to people with preexisting medical conditions. Medicaid was expanded to include millions of previously uninsurable individuals who had been excluded from the health care system. Uninsured rates among whites, blacks, and Hispanics dropped, narrowing though not eliminating racial and ethnic insurance coverage gaps.21 At the same time, the Affordable Care Act incorporated the worst aspects of our fragmented for-profit health insurance system. The tiered system of insurance—where the coverage options for the poor are markedly different from those for the rich—has further hardwired inequity into the law. In 2004 there were fifty million people without health insurance in the United States. That year the Institute of Medicine published a report, “Insuring America’s Health,” that outlined the principles against which any health reform legislation would have to be measured.22 The institute identified the ideal system as having “universal, continuous insurance coverage that is affordable and sustainable for individuals, families, and society, and should enhance well-being through care that is effective, efficient, safe, timely, patient-centered, and equitable.” Eleven years later, none of these standards was being met. Even after the passage of the Affordable Care Act, there are around thirty million Americans without insurance and an equal number of underinsured who have health insurance policies but with deductibles and copayments that are high enough to deter care.23 How did the United States end up with a more fragmented, more costly, and more confusing health care system? Simply stated, collusion between members of Congress and entrenched corporate health insurance and Big Pharma interests precluded a more equitable and lower-cost solution. What Americans got with the Affordable Care Act was complicated insurance marketplaces in every state with a complex array of confusing private insurance products. The health reform process exposed, in the words of the British medical journal The Lancet, “how corporate influence renders the US Government incapable of making policy on the basis of evidence and the public interest.”24 When the moment arrived to consider having a Medicare-like “public option” on the state exchanges to compete with private insurance companies, Senator Joseph Lieberman of Connecticut, the deciding Senate vote, deep-sixed the idea by threatening a filibuster.25 The capital of Connecticut is Hartford, the home of Aetna, one of the big five health insurance companies. Skin in the Game There are three major structural flaws in the Affordable Care Act, all of which could be solved by a single-payer system. The first flaw is The Poison Pill: Health Insurance in America * 137 138 * CHAPTER TEN that the insurance expansion is neither universal nor equitable. For example, because mandatory Medicaid expansion was blocked by the
Supreme Court, nineteen states have left millions of poor people uninsured. 26 These states account for over half of poor uninsured blacks, single mothers, and the country’s uninsured working poor. For poor people in these states, it is as if Obamacare was never enacted. Note that for the most part these states that have refused to expand Medicaid are the former Confederate slaveholding states, accentuating the legacy of structural racism. Access to specialty care for those who receive Medicaid coverage is limited compared to access for patients with private insurance.27 More than one-third of US doctors refuse to take Medicaid—another structural barrier.28 The second flaw is that premiums, copays, and deductibles for private health insurance and products on the marketplaces are prohibitively high for many people, especially the working poor. In 2015 average annual premiums for employer-sponsored health insurance were $6,251 for single coverage and $17,545 for family coverage. Between 2014 and 2015, premiums increased by 4 percent, while during the same period workers’ wages increased 1.9 percent. Premiums for family coverage increased 27 percent during the last five years, while cost sharing has skyrocketed.29 The average individual deductible across the marketplace plans in 2016 was $5,765 for bronze plans. After the deductible is paid, an individual with such a plan will face 40 percent copays for services.30 Insurance companies have reacted to their rising costs by creating narrow networks of providers and hospitals.31 This limits choice of patients by restricting the doctors and hospitals whose services they can use. At the heart of the Affordable Care Act are subsidies for the working poor to pay for health insurance premiums.32 The goal was to keep these premiums within reach of most Americans. It was a sweet deal for the insurance companies. The insurance companies are guaranteed to get their premiums; the federal government poured billions of dollars into their coffers. In exchange, an individual gets an insurance card. But with that card came unprecedented out-of-pocket expenses that kicked in before the insurance company paid one cent.33 The belief is that without “skin in the game,” the newly insured will overuse the system. As a result, coinsurance and deductibles that many Americans now are forced to pay have skyrocketed across the insurance markets. Yet every study ever done on the impact of copays and deductibles (even for middle-class people) is that they cause individuals to delay medical care.34 Under a single-payer health care system there would be no copays or deductibles. Obamacare Bullshit The third flaw of the Affordable Care Act was that long-term doctorpatient relationships have been disrupted by insurance restrictions. President Obama said, “No matter how we reform health care, I intend to keep this promise: If you like your doctor, you’ll be able to keep your doctor; if you like your health care plan, you’ll be able to keep your health care plan.”35 This turned out to be untrue. Windora Bradley, a year before her stroke, struggled to pay her health insurance premiums. Faced with the dilemma to buy food or go without medications, she chose to go without medications. At one of her office visits, she let loose. “I’m tired about this Obamacare bullshit,” she shook her head, frowning as her jowls quivered. “I worked for thirty-five years. Those people on welfare who never worked are getting free health care. I am paying $700 each month and there is not enough left for medicines and food. That’s not right. That’s why I call it Obamacare bullshit.” Windora lived on a pension of about $1,000 per month. Most went for the premiums on her health insurance, which she still received through the Chicago Board of Education. She scrimped and saved to pay for her medications for her diabetes, hypertension, asthma, and vascular disease. Her situation is common among the working poor. Windora was ultimately able to get insurance on the marketplace that reduced her premium costs but not her out-of-pocket expenses. At first she purchased a Blue Cross insurance plan that she was told my hospital accepted, but this proved incorrect. She then had to purchase a more expensive plan to stay with me. Meanwhile her two sisters, who The Poison Pill: Health Insurance in America * 139 140 * CHAPTER TEN had also been my patients for over thirty years, had to switch doctors because my group did not accept the insurance they enrolled in. A number of my long-term patients found themselves in this dilemma. In 2015, after her stroke, Blue Cross dropped my hospital and many others from the plan Windora had just purchased. There was only one plan, from United Health Care, in all of Cook County that included my hospital and me in the network. The week after Windora signed up for it, United Health Care let it be known that it was considering withdrawing from all the exchanges in 2017.36 In three years of the Affordable Care Act, Windora had purchased three different insurance policies just to retain me as her physician. In the fall of 2016, United Health Care announced it would drop my hospital from its network, and Windora, now wheelchair bound and speechless, is forced to find another doctor (to say nothing of her many specialitsts) after thirty-six years. For someone like Windora with complex medical and social obstacles, keeping a team of providerss who are familiar with her medical travails is essential to getting good care. For me, her longtime doctor, it is a gut-wrenching experience. The fact is that Obamacare, despite its modest benefits, does not remedy American health care inequity. It will never achieve universal coverage. Eleven million noncitizen residents will never be eligible for its benefits. Thirty million people will remain uninsured. While insurance coverage has increased for all races, there is still a large racial and ethnic gap in insurance coverage, which will perpetuate health disparities. For those with health insurance, spiraling copays and deductibles have made access to care more difficult. Finally, by allowing a dizzying array of for-profit insurance carriers with high administrative overhead expenses, the Affordable Care Act as currently configured will not control costs. In 2016, the third year of Obamacare, insurance companies asked for double-digit increases in premium prices, as they claimed costs of delivery had outstripped the revenues. Meanwhile, health insurance stocks are trading at all-time highs, while patients like Windora Bradley face rocketing expenses and uncertainty about the future.37 The Poison Pill: Health Insurance in America * 141 A Call for Single Payer I speak for many of my health care colleagues across the nation when I say that the Affordable Care Act is a disappointment. In contrast, an improved and expanded Medicare for All would achieve truly universal care, affordability, equity, and effective cost control. It would put the interests of our patients—and our nation’s health—first. By replacing multiple private insurers with a single nonprofit agency like Medicare that pays all medical bills, the United States would save approximately $400 billion annually. Administrative bloat in our current private-insurance-based system would be slashed. That waste would be redirected to clinical care. Copays, coinsurance, and deductibles would be eliminated. A single streamlined system would be able to rein in costs for medications and other supplies through the system’s strong bargaining clout—clout directed to benefit health, not profits. Finally, it would create an equitable system of care that would provide equal access to rich, poor, black, and white. As a result, life expectancy gaps between rich and poor would narrow. Hospitals that serve poor communities would have access to capital investment based on need. It has been done in other countries, and it can be done in the United States. Single-payer health care sta
nds in stark contrast to the ACA’s incremental reform. Yet it is important to remember that enactment of a single-payer system requires the defeat of deeply vested, deep-pocketed ideological opponents, health insurance conglomerates, and a thick alliance of health care constituencies along with other interest groups. The Affordable Care Act, passed by a Democratic majority and signed by a Democratic president, was a weak compromise that left the foundations of our flawed $2.9 trillion health care system intact. It will be some time before political conditions are again right to tackle an improved Medicare for All. So why, given these hurdles, do I (and many other health care providers) persist? I persist because I have watched too many patients suffer and die because they lacked health insurance or had the wrong insurance card. I persist because I have witnessed the racial and ethnic death gaps enabled by our current health insurance arrangements. I persist because simple fairness dictates that health care is a fundamental human right. I persist because of patients like Win142 * CHAPTER TEN dora and Sarai, who deserve better. For those who counter that single payer is too expensive or politically unfeasible, we persist because the American ideal of “life and liberty” cannot be achieved without an equitable and universal health care system. Winston Churchill reportedly said, “You can always count on the Americans to do the right thing… after they have tried everything else.”38 We have tried everything else. I look forward to being part of a single-payer health care system that values the health of individuals, families, and communities as a common good—where health care is valued as a human right. Someday.
Medical research reforms improve access and distribution of treatments while preventing racist malpractice.
Harriet A. Washington 7, Writer, Washington was Health and Science editor of the Rochester Democrat and Chronicle. In 1990, she was awarded the New Horizons Traveling Fellowship by the Council for the Advancement of Science Writing.[4] She subsequently worked as a Page One editor at USA Today newspaper, before winning a fellowship from the Harvard School of Public Health.[5] In 1997, she won a John S. Knight Fellowship at Stanford University, and in 2002 was named a Research Fellow in Medical Ethics at Harvard Medical School.[6], “Medical Apartheid, A dark History of Medical Experimentation on Black Americans from Colonial Times to the Present,” Epilogue, pp 423-442.
EPILOGUE Medical Research with Blacks Today The voluntary consent of the human subject is absolutely essential. —THE NUREMBERG CODE In this book, I have traced the long, unhappy history of medical research with black Americans. I have detailed how blacks have been convenient, ;powerless, maligned, and abused subjects of profitable medical research and also how their treatment has changed over the years. Slaves were physically forced into painful medical bondage, their bodies were forced onto the stage of medical experiments to lend credence to claims of black inferiority and difference, and black bodies were even conscripted for anatomical dissection after death. Blacks were made subjects of experimentation that served to denigrate their intelligence or to provide distorted justifications for their enslavement. The reproductive rights of blacks also have been subjugated via fraudulent research up to the present day. Groups of vulnerable blacks, including children, soldiers and prisoners, have been consistently targeted. Both the federal government and private corporations have devised large-scale research abuses that range from radiation experiments to biological-weapons development. This medical ill-usage has not strictly paralleled scientific knowledge: Rather, it has mirrored the larger American cultural beliefs as well as politics and economic trends. Once, black Americans enjoyed the sparsest of legal and social protections, nearly universal abject poverty, and few health-care options. But this social and legal landscape has changed dramatically, and so have research practices. Where We Are Today Today, the worst abuses are mostly memories, although some forms of abusive research persist, and a few new issues have arisen. However, today’s offenses pale beside those our forebears survived. Today, much medical research is more than safe for African Americans; it is necessary. This may seem a strange message for a book that has described so many racial research abuses, but this volume’s frankness is an essential prerequisite for asking African Americans to consider participating in medical research. No one can dismiss blacks’ historically grounded fear of research and retain any credibility. We must acknowledge the past in order to regain trust and to seize the future. But medical abuse is more than historical fact. Although less rife, it remains a contemporary reality, and an ever-present possibility. The challenge is to prepare the way for a new openness to medical research on the part of African Americans while maximizing their protections from abuse. I do not see how this can be accomplished without candor, because the traditional strategy of ostrichlike denial merely heightens mistrust. To gain trust, we must first acknowledge the flagrant abuses of the past and the subtler ones of the present, yet much of the popular argument around medical experimentation and African Americans is dictated by culture and politics, not historical fact. The scientific camp includes most physicians, medical researchers, and others of all racial groups who pride themselves upon their educational sophistication. They tend to deny all present research dangers and most past ones, dismissing fears as emanating from those who are uneducated about the legal protections governing research or so credulous as to believe unsubstantiated rumors about the medical targeting of blacks. Mainstream medical scientists, journals, and even some news media fail to evaluate these fears in the light of historical and scientific fact and tend instead to dismiss all such doubts and fears as antiscience. The potentially damping effects on medical research, not the facts, become the focus of most discussions of troubled experiments. Like the medical school professor whose horror at my choice of topics I described in the introduction, many claim that any acknowledgment of abuse will drive African Americans from sorely needed medical care. However, a steady course of lies and exploitation has already done this. A 2002 American Journal of Law and Medicine article estimated that as many as twenty million Americans have enrolled in formal biomedical studies—but fewer than 1 percent are African American.1 Yet the focus on African American fears is misplaced. A January 2006 Public Library of Science study entitled “Are Racial and Ethnic Minorities Less Willing to Participate in Health Research?” examined the consent rates of twenty research studies that reported consent rates by race or ethnicity for more than 70,000 individuals. It found only slightly lower consent rates for blacks compared to (non-Hispanic) whites. The investigations ranged from interviews to drug treatment to surgical trials. Yet blacks are significantly less likely to be included in clinical trials, which suggests that some factor other than consent is implicated. Studies such as those mentioned in chapter 11 already show that black children are more likely to be used in nontherapeutic, harmful studies than in therapeutic investigations. Future research may document that this is true for black adults as well. In short, many scholars such as Tuskegee Bioethics Center director Dr. Vanessa Northington Gamble aver that the true focus should not be on the aversion of black subjects but rather on the untrustworthiness of American medical research when it comes to studies involving blacks. This book certainly documents this ethical deficiency. Although the focus of this book is clearly on experimental abuses of a vulnerable population, I do not want to leave the impression that I am advising people to avoid potentially beneficial medical experimentation. Quite the contrary. African Americans desperately need the medical advantages and revelations that only ethical, essentially therapeutic research initiatives can give them. The reticence of African Americans is the reasonable and understandable result of a horrendous history, but it lags behind progress. African American absence from research reflects the realities of yesterday, not today. More to the point, this aversion is a reaction black Americans can ill afford. For this book to have the most value, I ask readers to hold two seemingly contradictory but actually complementary facts in mind. The first is that African Americans must welcome and embark upon medical research as a bridge to fording the gulf that yawns between the health profiles of sickly enfranchised blacks and those of healthy, long-lived whites. The second fact is that African Americans must remain wary of research abuses. They are rarer, but the potential for exploitation and abuse still looms. Physicians, patients, and ethicists must also understand that acknowledging abuse and encouraging African Americans to participate in medical research are compatible goals. History and today’s deplorable African American health profile tell us clearly that black Americans need both more research and more vigilance. The worst abuses no longer occur and others are becoming far rarer, in part because the media exposure of racial research scandals has led to public condemnation. This, in turn, has helped to support the enactment of stiffer laws carrying real penalties rather than yesterday’s toothless codes, such as that written at Nuremberg. This matrix of legislation is not perfect, but it reduces the unabashed use of African Americans as duped or unwitting research subjects. Sociopolitical changes have also helped in this regard. There are no more “separate but equal” hospitals to provide powerless research fodder. There are no more nakedly vulnerable black people without the protection of the law; there are no more hospitals devoid of those black physicians who can protest racial dichotomies in patient treatment. Black physicians, researcher
s, and journalists now join the white professionals of conscience who have brought such abuses to attention and to a stop. The news media may not always discern and detail the patterns underlying problems with new therapies, but they do regularly expose research abuses. Government has shown itself more likely to close down entire university research programs under the aegis of the FDA when embarrassed by federally sponsored abuse. Closure is a fate that has been suffered by even premier universities, from Duke to Johns Hopkins. Most universities have heeded the message. All this amounts to a limited but real success story. African Americans are no longer the primary targets of research, exploitation, and abuse. Research ethics and policies have evolved to the point where the worst abuses of blacks are but a bad memory. That’s the good news. Africa: Continent of Subjects The bad news is that the racial mythology, the medical exploitation of black bodies for profit, and even the instances of medical sadism that threatened African Americans in the past have been exported to Africa. The recent history of medical research in Africa parallels closely that of African Americans in the United States a century ago. Colonialism and its residual racial and class separations have isolated blacks in hospitals or hospital wards away from whites, just as segregated hospitals once provided exclusively black subjects for white doctors. Laws that offered few or no protections for abused blacks have emboldened unscrupulous physicians and researchers who put curiosity and profits above the rights and welfare of their black patients. Western physicians, scientists, and pharmaceutical companies need large pools of people for Phase I trials, and they have swarmed Africa as they once flocked to prisons. U.S. researchers who can no longer conduct trials at home without intense scrutiny from the FDA and the news media have moved their operations to sub- Saharan Africa to exploit the public-health vacuum that once condemned black Americans. “To get around consent forms and a skeptical public, many researchers are turning their attention to African and other developing countries,” Robert F. Murray, Jr., M.D., chief of the Division of Medical Genetics at Howard University, has observed. “I would say the greatest chance for injury is in the Third World, where people don’t even know research is going on and don’t have a clue.” The long history of how Western investigators have taken their more questionable research initiatives to Africa is well documented in works such as Dr. Wolfgang U. Eckart’s Medizin und Kolonialimperialismus. In it, Eckart details how, in a ghastly dress rehearsal for Dachau, nineteenth-century German scientists conducted genocidal experiments on Africans, especially the Herero of Namibia.2 The United States, like Europe, has long used its nonwhite colonies and territories as its laboratories. For example, Richard Strong, M.D., used prisoners in the Philippines to conduct deadly malarial experiments, and chapter 8 relates how Brazilian, Mexican, and Puerto Rican women have more recently been used for birth-control trials that maimed and killed many.3 Warwick Anderson, M.D., documents how colonizing nations, including the United States, have used often-mythical racial differences, including the purported infectious-disease immunities of Africans, to further colonial aims and to justify the use of natives as workers in dangerous environments—just as U.S. slave owners once did. In much of Africa, Asia, and South America, a wide understanding has reigned that ethical rules governing medical experimentation were not “for natives.” Henry Louis Gates, chairman of African American Studies at Harvard University, recalls encountering such persistent racial myths during his undergraduate studies. “I was premed at Yale and took a year off to work at a mission hospital in Tanzania, where the doctors were all Australians. I was only twenty-one years old and I gave anesthesia to patients. I was shocked by the fact that when patients were writhing in pain, the doctors would say, ‘They don’t experience pain the same way we do.’ I was totally disgusted. I complained loudly and called them all racists, of course. But this illustrates how it is always easier to distance oneself from the pain of ‘the other.’” The use of poor people of color abroad by American scientists today enables researchers to escape both the strictest scrutiny of institutional review boards and the gaze of the FDA, says Murray, who issued a prescient warning in 1994: “People are going overseas trying to do research in Africa. They are saying, ‘We don’t have to go through all that IRB stuff to study AIDS, sickle cell and other diseases. This sort of questionable research is now going on in Africa and Third World countries because there are plentiful patients and the scientists are not subject to the same restrictions they are now subjected to here.” The Third World has become the laboratory of the West, and Africans have become the subjects of novel dangerous therapeutics. In 2002, the hormones of “Bushmen” were mined for potential weight-loss therapies;4 human growth factor was tested on Pygmies before being used on Western children;5 and Depo-Provera, although a carcinogen, was tested on Zimbabwean women before it was introduced into the United States as a reproductive injection. American firms tested artificial blood on unsuspecting black South African hospital patients, at the cost of at least twenty deaths. Harvard tested HIV therapies through research that would have violated ethical requirements for Americans. Some of the research on Africans by Western scientists has been more subtle but equally troubling from an ethical perspective. For example, trypanosomiasis, or sleeping sickness, kills as many as half those it infects in the central African regions of Uganda, the Democratic Republic of Congo, Sudan, Ethiopia, Malawi, and Tanzania. Melarsoprol, the only effective treatment, is a very toxic compound of arsenic and antifreeze that kills one in five people who take it. By 1995, the pharmaceutical firm Aventis had completed research demonstrating that its drug eflornithine was effective against sleeping sickness, although not against cancer, as the firm had hoped. But the company decided to abandon its use against trypanosomiasis, due to high production costs and low profits. It began seeking other profitable uses for the drug, and U.S. researchers soon found one: Eflornithine effectively banished facial hirsutism in women. Aventis and later Bristol-Myers Squibb began marketing the drug as Vaniqa, because many American women were able to part with fifty dollars a month to keep their faces free of hair, while few Africans were able to pay fifty dollars monthly to save their lives. It is completely understandable that the firm should focus its resources upon the profitable depilatory use of their medication, but it is disappointing that it chose not to make the drug available cheaply to Africans in order to vanquish sleeping sickness. Doctors Without Borders forged a coalition, which included Bristol-Myers Squibb, Bayer, and the Bill and Melinda Gates Foundation, to provide drugs to Africans through 2006, but although sleeping sickness threatens sixty million people, only 7 percent of these have access to adequate medical treatment.6 Medications considered far too dangerous or too hopelessly tainted for testing in the West have been introduced into clinical trials with unsuspecting African patients. Within the past decade, even the infamously teratogenic drug thalidomide has been tried on Africans as a treatment for leprosy—forty years after it produced twelve thousand horribly deformed babies around the world. FDA researcher Frances O. Kelsey, M.D., refused to approve thalidomide as a treatment for morning sickness in the 1950s because she determined that clinical trials did not demonstrate its safety; her caution saved most American infants the fate suffered by English and Europeans whose mothers took the drug.
(Only those U.S. babies whose mothers received thalidomide samples from their physicians were affected.)7 But Third World women subjects of thalidomide trials for leprosy and AIDS were not warned of the horrible birth defects the drug can cause. African experimental subjects, like the slaves of antebellum America, are legally vulnerable, relatively powerless, and racially distinct. Like black Americans after the Civil War, Africans’ poorer health and vanished healthcare infrastructure make it easier to pass off nontherapeutic research as medical therapy or to impose participation in research as a condition for therapy. The U.S. physician-researchers who descend upon Africa in search of subjects frequently characterize their work as therapy, offering experimental solutions for medical disasters. When physicians offer Africans the same therapeutics they offer Westerners, they can lay claim to unalloyed beneficence. But the Western standard of care is not being offered; usually poor black Africans with no access to medical attention are offered treatments that are new or untried. Sometimes U.S. researchers appear in the midst of an epidemic against which the stricken Africans have no medication and offer experimental treatment. During the height of a 1996 meningococcal meningitis epidemic, for example, scientists offered Pfizer ’s experimental drug Trovan (floxacin) to terrified parents in Kano, Nigeria. Nigerians desperate for medical attention grasped at Trovan’s straw. By the time the experiment ended, two hundred children were left severely disabled and eleven were dead. In 2001, at least 211 Nigerian parents sued New York–based Pfizer, Inc., alleging that non-FDAapproved experiments had killed or injured their children; that Pfizer failed to obtain the requisite approval from local leaders; and that the pharmaceutical giant failed to administer standard therapies with proven efficacy, such as Pfizer ’s own ceftriaxone to those children who continued to deteriorate after being given Trovan. Peter Ebigbo of Childrights Africa told Inter Press Service, “Our leaders must not allow Nigerians to be used as guinea pigs by any company to make money.” Pfizer counters that it treated ninety children with Trovan and ninety-seven with ceftriaxone, and that it obtained all the necessary approvals. However, Dr. Sadiq Wali, chief medical director of the Aminu Kano Teaching Hospital, says the hospital’s medical ethics committee never gave Pfizer the required approval to use the drug at the infectious-disease hospital in Kano. “Pfizer did not do that. I am not sure if they had the consent of the people used as guinea pigs, because that means informed consent in medical parlance. Such consent has to do with the patients being told the good as well as the side effects of the drugs to be administered,” said Dr. Wali. But documenting Trovan’s effects on these patients for the lawsuit would prove tricky: The medical records of 350 meningitis patients treated between April and June 1996 have disappeared from the hospital.8 The dearth of health care in much of Africa and the Third World makes its peoples vulnerable to experimental abuse. One cannot generalize about a continent as large and diverse as Africa. There are wealthy countries as well as poor ones, and a few health-savvy nations, such as Cameroon, could teach us a thing or two about providing health care to all our citizens. But much of sub-Saharan Africa has been devastated by colonial rape and depletion. These have left poor health, a ravaged health-care infrastructure, and few physicians in their wake. A mere 750,000 health workers care for the continent’s 682 million people. The Organisation for Economic Co-operation and Development estimates that this represents a health-care force that is as much as fifteen times lower than in OECD countries. Only 1.3 percent of the world’s health workers practice in sub-Saharan Africa, but the region harbors fully 25 percent of the world’s disease.9 A bare minimum of 2.5 health workers is needed for every one thousand people, but only six African countries meet this standard. Instead, the average in sub- Saharan Africa is 0.8 health workers per one thousand people—less than onethird the minimal standard. To achieve the minimum health-care staffing level will require an infusion of one million health workers into the continent. Safe devices are as scarce as doctors. Reused SUDs (single-use devices) and unsterilized needles help to spread AIDS and other infectious illnesses throughout Africa. The medically damaging injection practices and use of ethically suspect research has fomented a loss of trust in vaccines in Nigeria. Much of the news coverage focuses upon the contentions by suspicious Africans that the administration of Western vaccines spreads HIV and causes sterility.10 But no matter whether these fears are correct or imaginary, the practical result is unambiguous: suspicious patients avoid care, and this iatrophobia means that “conquered” diseases such as polio are seeing a resurgence on the continent. A burgeoning research culture is thriving in the midst of this desultory public-health activity and therapeutic vacuum. While the continent’s wounds go unbound, research is big business in Africa. Seventy billion dollars is spent each year on medical research, but only 10 percent is devoted to diseases that cause 90 percent of the global health burden.11 This dichotomy provides an incubator for research abuses. Surrounded by pain, death, and infection, desperate, medically ignored Africans are confronted with a Hobson’s choice: experimental medicine or no medicine at all. Western researchers who conduct investigations in the Third World are supposed to elicit the approval of their home medical institutions. For example, most university policies align with FDA regulations that require treatments given to the control-group members must be the standard of care for the treatment of the illness. Thus if one wanted to test Trovan in Connecticut, the protocol or research plan would stipulate that researchers must give the control group the best drugs known to treat meningitis, a drug such as ceftriaxone. Under some conditions, generally when no effective treatment for a condition exists, control-group members receive a placebo, an inert substance or a sham technique that does not offer any intrinsic therapeutic value but allows scientists to compare results between a treated and an untreated group. But placebo studies, which are falling out of favor in the West, are completely inappropriate for serious diseases for which effective treatment exists. You cannot ethically justify withholding, for example, an efficacious drug such as AZT from HIV-positive people or people at high risk of contracting HIV just to determine whether protease inhibitors work better than nothing. You must give the tested group protease inhibitors and the control group either AZT or the best-known standard therapy. Tossing the people in the control group placebos, vitamins, or antibiotics would doom the control group and so would be an unacceptable ethical breach—at least in the West. However, American IRBs treat Africans as second-class subjects and employ different standards for evaluating study designs in Africa than those used in the United States. Requiring evidence that the drug being administered meets or exceeds the standard of medical care is de rigueur for Western trials, but university IRBs now employ an ethical sleight of hand to stipulate that the tested drug must meet or exceed the standard of care in the country where the study is being evaluated. In impoverished, medically underserved sub-Saharan African countries, that standard of care has historically tended to be nothing. Americans who conduct research in African venues are supposed to seek the consent of their subjects. But this has never been a popular move, as the exasperated 1964 complaint of Dr. Francis D. Moore, a Harvard surgeon whose photograph had graced the cover of Time a year earlier, illustrates. Several years ago an individual from this country went to Nigeria to
try out a new measles vaccine on a lot of small children. Now how exactly are you going to explain to a black African jungle mother the fact that measles vaccine occasionally produces encephalitis but that more important than that it might sensitize the child for the rest of his life to some other protein in the vaccine? We now know that any sort of immune response excites cross reactions. For example, if a person develops a heightened immune reaction to some specific antigen such as typhoid he will be found to have other high titers against non specific antigens at the same time. In fact, there is a suspicions [sic] that some of the so-called auto-immune diseases are aroused by exposure of the reticuloendothelial system to completely different antigens. The possibility therefore arises that measles vaccines applied to thousands and thousands of children might excite in some of them such diseases as thyroiditis and ulcerative colitis. Can you imagine trying to explain that to a jungle mother? …One of the greatest assets of a good doctor is the ability to look a patient in the eye and have the patient go along with him on a hazardous course of treatment…. The same quality is exhibited by a medical experimenter when he looks at [a] patient and says that he thinks everything is all right.12 Moore avoided the troublesome task of individual disclosure and consent, and so do many researchers in Africa today, who do not want to take the time to translate their proposal into the local language and culture. They do not want to explain to hundreds or thousands of subjects such risks as iatrogenic encephalitis and sensitization—concepts that would have been as murky to a Connecticut homemaker in 1964 as they were to Moore’s “jungle mother.” These scientists do not want to risk having the subjects reject the experiment once they understand the possible health costs. Neither do they especially want to explain why they are testing a new therapeutic approach to HIV thousands of miles away from the millions of cases in their own country. Moore doesn’t mention this sort of question in his tirade against informed consent, but I suspect that it is the more difficult of the questions his jungle mother might put to him today. The Erosion of Consent Unlike the disastrous Third World research trends, medical research with black Americans has lost so much of its historically abusive nature that black Americans should embrace new medical research—after judicious inquiries of their own into any study they are considering. But there are still issues that must be addressed, and until these problems are rectified, black Americans must embrace medical research warily. These issues include the recent erosion of informed consent; the need for better-quality research into black health issues; the overemphasis upon genetic research in nongenetic issues; and the government’s distortion of research with black Americans to further political and ideological ends. “It is the most fundamental tenet of medical ethics and human decency that the subjects volunteer for the experiment after being informed of its nature and hazards. This is the clear dividing line between criminal and what may be noncriminal. If the experimental subjects cannot be said to have volunteered, then the inquiry need proceed no further.” So testified Andrew Ivy, M.D., chief witness for the prosecution in the Nuremberg doctors’ trial. The Nuremberg Code was instituted in August 1947, by Americans judging twenty-three physicians and scientists, to ensure that the horrors of abusive medical experimentation never again be visited upon the world. Its very first line is unambiguous: “The consent of the subject is absolutely essential.” But American research culture increasingly disagrees. In October 1996,13 the Department of Health and Human Services passed 21CFR50.24, a regulation that robbed seriously ill emergency room patients of the right to informed consent. This allows researchers to legally enroll such patients in medical-research studies and test experimental therapies on them without their consent.14 The emergency room deaths began the very next year. On April 1, 1997, when the Occupational Health and Hygiene Plan (OHHP) suspended a U.S. clinical trial that had enrolled unwitting patients in a clinical trial of diaspirin cross-linked hemoglobin (DCLHb) for treating shock. So many more people who received the experimental treatment died than those receiving standard care that the trial had to be stopped early. These people had never given their consent to participate in the study that killed them. Yet today the practice of experimenting with nonconsenting emergency room patients continues. For example, when they need a blood transfusion, unconscious patients brought into some emergency rooms are as likely to be given an artificial substitute as blood—without their knowledge. Also, the AbioCor company proposes to implant their complication-ridden model of a self-contained artificial heart into a wide variety of heart-attack patients who are brought into emergency rooms if they meet certain (rather wide) research criteria—again without their permission or knowledge. And informed consent is also being attacked more insidiously—in assaults upon existing laws.15 Various ethicists who are experts in human medical experimentation, such as Jay Katz, M.D., and George Annas, J.D., worry that the vague language of federal regulations governing human medical experimentation is being interpreted in a manner that minimizes protections. At the same time, they point out addenda to these regulations that further curtail patient protection and patient autonomy while expanding the types and number of people who can become subjects. The erosion of consent is often presented as a partial surrender or a compromise between the needs of researchers for subjects and a small loss to a patient autonomy. Or it is presented behind the mask of futility—in such scenarios, it is argued, the patient is unconscious and cannot agree or disagree to partaking of a possibly lifesaving experimental treatment, so his doctors should decide for him. In such cases, “research” is conflated with “treatment” to justify removing informed consent from the equation. But these scenarios are false and misleading. It is not necessary to waive informed consent in order to provide the unconscious with treatment: Laws already exist that permit doctors to offer the best-available treatment to patients who are comatose, unconscious, underage, or in other ways unable to consent to treatment. But these laws do not extend to experimentation, and rightly so. Treatment focuses upon the patient’s needs; experimentation focuses upon the researchers’ needs, no matter how much those researchers may invoke possible or future benefits for patients. In fact, these studies are typically randomized, which means that the computer, not the doctor, determines what experimental therapy will be administered. This may not be the best treatment for the patient, nor the therapy the patient would choose. Once one loses the right to be told what one is about to undergo, to agree or to refuse participation, research policy gains momentum on a very slippery slope. This book documents the depths to which researchers have stooped to bypass the consent of the subject. In fact, African Americans first became favored subjects because during the antebellum period they did not enjoy legal protections and researchers did not need their consent. This vulnerability also persists today in other settings where blacks are overrepresented, such as military ground troops. In 1990, the Department of Defense (DOD) sought and obtained from the Food and Drug Administration a waiver of the informed-consent requirements for human medical experimentation. Under Rule 21 CFR 50.23(d), soldiers suddenly lost the protection of the informed-consent provisions that give other Americans the right to say no to experimental medications. The DOD forced them to accept experimental drugs, including pyridostigmine bromide, a putative prophylactic against nerve gas atta
ck; and the pentavalent botulinum toxoid vaccine for botulism. In 1998, with FDA permission, the DOD Anthrax Vaccination Immunization Program (AVIP) also began immunizing 2.4 million soldiers against the potential threat of airborne anthrax: At least 900,000 troops have been immunized to date. But, citing devastating side effects and deaths that have been validated by amendments to the medication warning labels, hundreds of soldiers have refused to comply, at least one hundred of whom have been court martialed, and many have been forced to leave the military. One of these was Jemekia Barber, who while stationed in Colorado was ordered to accept an anthrax vaccination in preparation for a transfer to Korea. She disobeyed that order on the grounds that the vaccination may not be safe for females of childbearing age. Black soldiers such as Barber are twice as common in ground troops as in American society, and so are especially vulnerable to measures such as forced vaccinations.16 In late 2003, Judge Emmet G. Sullivan of the United States District Court in Washington, D.C., noted that the Supreme Court had ruled that U.S. combat troops could no longer be compelled to take the experimental anthrax vaccinations. The FDA responded by rapidly elevating the anthrax vaccine from a questionable investigational drug to an approved therapeutic, allowing the DOD to sidestep the intent of the law and restoring the soldiers to a state of investigative servitude—“investigative” because the data collection and evaluation of the anthrax vaccine risks, including death, will continue among soldiers. Fortunately, in 2004, Judge Sullivan ordered the DOD to stop forcing anthrax vaccines on U.S. military personnel. Barber ’s lawsuit against the army continues. Today, African American are at greater risks than whites of being conscripted into such research without giving their consent, because blacks are more likely than whites to receive their health care from emergency rooms. However, this coin of research vulnerability has an obverse: We also need more and better research into black health care. Such high-quality research has begun to emerge but, as chapter 14 points out, it has also taken some wrong turns. For example, research into black ailments and medications, such as that conducted in support of the black heart-failure drug BiDil, is sometimes sloppy and illogical, and in other cases it is based on the thinnest of premises. The long history of flawed science in the service of preconceived notions is being supplemented by new, insufficiently questioned racial theories of disease. Adopting these unquestioningly while ignoring important environmental disease factors not only imperils black health; it also reinforces the idea of blacks as possessing dramatic physiologic differences. The inclusion of blacks in quality American medical research is also important for everyone. Why? Many arguments cite the dollar savings or the reduction in disease exposure to the larger society that will emanate from better health among African Americans. However, I am often uncomfortable with arguments that focus solely on utility, especially when it comes to medicine and health. Such benefits can be elusive or hard to quantify. I believe that caring for people and maximizing their chances at health and happiness are goals that we should pursue for their own sake, because they are the right thing to do. They elevate us spiritually and socially, and reaffirm our cohesion and our humanity. But that said, there’s no denying that increasing the ethical, reasonably safe research available to African Americans will benefit everyone else. This book has repeatedly demonstrated how the poor health profile spawned by experimental abuse has not only harmed blacks but has spilled over to harm their white compatriots. Pathogens, for instance, are notoriously democratic. Had African Americans not been excluded from early AZT therapy on the basis of flawed HIVtreatment clinical trials (that largely excluded them), would the number of HIVinfected African Americans be lower today? Would the number of all domestic AIDS cases be lower, considering that black Americans today constitute half of all the HIV-infected? It’s too late to know now, but not too late to do better racial recruitment for the next HIV clinical trials. The fallout extends beyond infectious disease. For example, Donna Christian-Christensen, M.D., who represents the U.S. Virgin Islands in Congress, has observed that the percentage of black Americans who are insured is lower than that of white Americans, and the cost of caring for these uninsured people raises the rates and health-care costs of all Americans. She said, “We’re getting to the hospital late, using much more expensive care: We’re really driving up the costs of health care.” In fact, a decade ago, research by Harvard School of Public Health professors Ichiro Kawachi, M.D., and Deborah Prothow-Stith, M.D., explained this public-health phenomenon in detail and even quantified it, emerging with what was popularly referred to as the “Robin Hood Index.” The shorthand is that public health suffers more in the nations with the greatest inequities in wealth, and that the middle class suffers nearly as much as the poor from inequities. In the United States, which has, for example, one of the world’s greatest disparities in income between the haves and have-nots, we have not only the greatest health disparities but the greatest health-cost burdens for the mostly white middle class. In short, whites should care about quality medical research for African Americans because its dearth has generated needless pain, suffering, anger, and costs that continue to permeate the fabric of our entire nation: It is not only a racial tragedy but also an American tragedy. For their part, African Americans cannot afford passivity. Seneca said, “It is part of the cure to wish to be cured.” When it comes to medical research, that wish must be awakened in African Americans. African Americans should not shun lifesaving research; indeed, they cannot afford to do so. Instead, they must carefully scrutinize research initiatives before becoming subjects. But we must do more: We must also address the dearth of therapeutic research in areas that affect the health of African American most dramatically. What changes are necessary to achieve this? REPAIR THE SYSTEM OF INSTITUTIONAL REVIEW BOARDS (IRBS) IRBs judge the scientific and ethical acceptability of proposed studies on human subjects. However, a string of abusive experiments have revealed that the nation’s five thousand IRBs have failed to perform their role of protecting the public, and African Americans in particular. In June 1998, a Department of Health and Human Services (HHS) report concluded that IRB staff are inadequately trained, subject to conflicts of interest, and overwhelmed by too many cases.17 The Office of Protection from Research Risks (OPRR) requires IRBs to have a minimum of five members, at least one of whom must have primarily scientific interests, another of whom must have primarily nonscientific interests, and another of whom must be otherwise unaffiliated with the IRB’s institution. But most IRB members are scientists affiliated with the organization in question, and even the lay members tend to have loyalties to the home institution. I propose that each IRB be composed of equal numbers of scientists and of peers of the group who will be asked to participate as subjects. Some may object that laypeople will be unable to understand enough about scientific experiments to judge their suitability and value, but as a medical communicator, I doubt this: I know many skilled and motivated scientists who routinely convey complex information to many people, although to do so may require some preparation and effort. Moreover, if a project cannot be explained to laypersons in an IRB meeting, how does a researcher propose to explain it to the potential subjects, as he [they] must do by law? I also propose that each IRB include a medical ethicist and, if possible, a medical historian. STOP THE EROSION OF CONSENT Ban exceptions to informed consent. Recognize the right of every patient to say yes or no as an absolute value and cease designating groups such as soldiers, unconscious emergency room patients, and Third World experimental subjects as appropriate subjects without their input. When physicians are faced with a patient who is unable to consent because of his or her medical condition, and whose condition requires treatment before a family member or other proxy can be consulted, I propose that the patient be treated as if the physician had no research protocol to worry about. Treat him or her, but don’t enroll that patient in a study. Instead, use the best-known treatment for that particular individual. INSTITUTE A COORDINATED SYSTEM OF MANDATORY SUBJECT EDUCATION The NIH and the Office of Research Integrity require that every practicing medical researcher receive education in the ethical and practical conduct of biomedical research. I took such a course at Harvard Medical School in 2004 and found it factually invaluable and culturally revealing. I propose that prospective research subjects be given the same advantage. Every institution that receives government funds to perform research should be required to hold approximately three classes that equip subjects with information about how research is conducted, what risks and benefits are inherent in different types of research, what their legal rights and moral responsibilities are, what sort of questions they should ask, and how they can maximize their chances of getting the desired result from the clinical trial they enter. Except for seriously ill or otherwise-incapacitated patients, only people who have completed this course should be eligible to participate in governmentfunded clinical trials, and only they should be permitted to serve on IRBs. EMBRACE A SINGLE STANDARD OF RESEARCH ETHICS We cannot retain moral credibility if we champion human rights in medical research at home and ignore them abroad. Researchers should be made to follow informed-consent strictures abroad that are as restrictive as those governing their research on American shores. Pharmaceutical companies should be forced to make lifesaving drugs available to people in poor countries, even when this means sacrificing their obese profits for the benefit of human welfare. Because the federal government sponsors much of the research that enables pharmaceutical companies to develop vital medications, the federal government should take advantage of its legal right either to force manufacturers to lower their prices or to suspend patent enforcement in poor countries. However, more important than any of the above recommendations is the need for African Americans to set their own research agendas. Black patients must take ownership of medical-research issues, as they have done with so many other complex health issues, from AIDS to environmental racism. Already, expert medical organizations have taken leadership roles. The National Center for Bioethics in Research and Health Care at Tuskegee University provides not only a center for scholars but also a venue for muchneeded lay education on medical research. The National Medical Association has also spearheaded patient education through its Project IMPACT, which has helped black Americans to navigate clinical trials safely by providing brochures, Web sites, and access to experts. African American and other health organizations must continue and expand the work of these pivotal groups, and much of this can be done close to home, through church health fairs, social organizations, and community activism. I challenge African Americans to bring medical-research education to the fore of the American health agenda. I challenge you, the reader, to familiarize yourself with the informational documents on this book’s Web site and elsewhere, to join an IRB, to ask the hard questions of physicians who are recruiting in your community, and to join appropriate clinical trials once you have satisfied yourself that they are worthwhile and relatively safe. I challenge African Americans to effect a transformation of our attitudes toward medical research and to demand our place at the table to enjoy the rich bounty of the American medical system in the form of longer, healthier lives.
Single payer health insurance instantiates a world in which quality of healthcare is not determined by financial status and eliminates profit motives that contribute to disparate outcomes. This dramatically improves lived conditions for millions of people and reduces premature death
David A. Ansell 17. Senior Vice President for Community Health Equity, Rush University Medical Center, Associate Provost for Community Affairs, Rush University, social epidemiologist and author. 2017. The Death Gap: How Inequality Kills. University of Chicago Press. CrossRef, doi:10.7208/chicago/9780226428291.001.0001.
The US healthcare system provides unequal care. Just as life expectancy is determined by which neighborhood you live in, for many Americans what hospital or doctor you can see is influenced by neighborhood, insurance, race, and ethnicity. And if you live in a high-mortality neighborhood, a trip to the local hospital might just be a matter of life and death. There are three major reasons why health care delivery in the United States is not equitable. The first is that health care is treated as commodity, not a right. The poor (with or without insurance) living in neighborhoods of concentrated disadvantage often have more limited access to quality health care.2 Those who are uninsured and underinsured experience great difficulty accessing needed care.3 Minorities and the poor are less likely to have private health insurance than white middleclass Americans.4 When minorities and the poor do have insurance, it is more likely to be one of the publicly funded insurance policies that not all hospitals and doctors accept. The second reason is that minorities sometimes get different treatment for the same illness from what whites get, regardless of insurance. Health care providers’ implicit racial bias and patients’ mistrust may be the causes of this differential treatment.5 The third reason why health care delivery is unequal is that the health care institutions that serve the poor in general suffer from cash and capital shortages. Neighborhoods of concentrated advantage where people with better insurance live have better-resourced hospitals and clinics than poor neighborhoods do. This is how structural violence works within the fabric of the health care system. It is not as if great care cannot be delivered in underserved settings. It is, every day. But it is inconsistent or constrained by a lack of resources. Thus minorities and poor people die disproportionally as a result of an unfairly structured American health care system. The Deadly Divide Take breast cancer care. It is a gruesome fact that in the United States, black women are 40 percent more likely to die from breast cancer than white women. While black and white American women now develop breast cancer at the same rates (something that was not always the case), more black women will die of the disease.6 Why does this particular death gap exist? An oncologist will tell you that black women first seek treatment with larger, more deadly, laterstage breast cancers.7 But the truth is that the breast cancer death gap is not just a biological phenomenon but a consequence of structural violence. A woman’s neighborhood can determine whether she will survive breast cancer or die from it. It would be grisly enough if breast cancer were the only disease that discriminated. It is not. From heart disease to hepatitis C, depression to diabetes, blacks throughout the United States suffer higher rates of illness and death than whites. It is tough to name many diseases that do not discriminate by race, place, and poverty. But breast cancer is a disease that demonstrates vividly how structural violence is woven into neighborhood fabric, especially in black communities. The Missed Breast Cancer The key to unlocking the inequity in breast cancer mortality came from a radiology reading room on the top floor of Mercy Hospital on Martin Luther King Jr. Drive on Chicago’s South Side. The room was dark except for the projected image of a mammogram. Amid the cool gray background of fatty breast tissue was an unmistakable irregular-shaped mass, its speculated white tentacles invading the surrounding tissue— a telltale sign of advanced breast cancer. It was as obvious as a ticking bomb. Dr. Paula Grabler, a radiologist specializing in reading mammograms and diagnosing breast cancer, was then the director of breast imaging services. At most of the other small hospitals that served South Side African American communities, mammograms were read not by specialists but by general radiologists. Too often cancers were evident but missed. This case was no different. “She was a middle-aged African American woman,” Dr. Grabler recalled.8 “The patient had been seen in the past at a small South Side hospital and had a screening mammogram that was reported to be normal. Months later she came to me with a lump in her breast. I asked to get a copy of the prior mammogram and there it was: a large, very obvious breast cancer.” Grabler typically removes mammograms from the view box when she meets with patients. She does not want the image of the cancer to shock the patient. “But on this particular day, I forgot to,” she said. The patient gasped when she saw the large white mass that exploded from the gray background of the x-ray. “How did they miss it?” she asked. It was a glaring mistake that could cost her her life. “I honestly don’t know,” Grabler replied. But she did know. The doctor who read her mammogram was not an expert. He was an itinerant radiologist who read all types of x-rays. Detecting breast cancer early requires meticulous attention to detail. Trained experts who read mammograms find six times more breast cancers than general radiologists do.9 In Chicago, most of the breast centers that are near or in the black wards do not have such specialists. Cancers are missed. Women die. An obvious breast cancer on a mammogram. The patient presented with a lump in her breast; the prior mammogram had been read as normal. Sometimes the cause of racial disparities in health care can be as banal as an inexperienced or busy doctor missing cancer. Source: authors personal collection. That missed breast cancer held the key to understanding an aspect of premature mortality: access to screening is important for finding breast cancer early—but the quality of that screening is even more critical. We found a screening facility serving Chicago’s black community that found two breast cancers for every thousand women screened, when the correct number should have been at least six.10 More than half were missed. Add to this injury the insult a black woman feels later when she goes to see a doctor with a bad cancer and is told that her genetics are at fault. Institutional racism as a structural cause of increased mortality can sometimes be as banal as a poorly qualified doctor missing a cancer in a poorly run mammography center. In a Chicago study of missed breast cancers, poor women, minority women, and publicly insured women were significantly more likely than well-insured white women to have their cancers missed (they were there on the mammogram on a lookback.)11 Socially disadvantaged women (poor, minority, and uninsured) are significantly more likely to have a cancer missed on mammography because they are more likely to receive care at substandard facilities, in segregated neighborhoods, than advantaged women are.12 Even if women of color do everything right—get screened, schedule follow-up appointments—they can still fare worse than white women simply by virtue of where they live. This is not just a product of poverty, though poverty itself is a big predictor of inequity. There are plenty of poor white women in Chicago, but there is not one poor white Chicago neighborhood.13 Poor white women can get their breast care in the same neighborhood hospitals as the more wealthy women in their neighborhoods. This is structural violence and institutionalized racism at work. Women living in Chicago’s neighborhoods of concentrated advantage are 37 times more likely have ready access to a “breast center of excellence” than women living in high-poverty neighborhoods.14 This maldistribution of resources did not occur by chance. The Spread of Racial Disparity None of this mattered when there were no effective treatments for breast cancer. From the mid-i930S, when breast cancer mortality was first measured in the United States, until the early 1980s, when screening mam
mography and new chemotherapy agents were shown to be effective at reducing mortality, there were no black-to-white or rich-to-poor gaps in breast cancer mortality.15 But in the early 1990s, as breast cancer became more amenable to new treatments, the breast cancer death rate for white women across the United States began to plummet.16 The death rate for black women in Chicago did not budge.17 The improvement for white women was easy to comprehend. Years of effort to raise awareness about the importance of regular mammography screenings coupled with improvements in technology and the emergence of specialists like Grabler meant that more cancers were detected early. Meanwhile, advances in treatment further increased survival rates. But it was here that a new racial death divide emerged. It grew from a sliver to a chasm over the next twenty years. Poor women, and specifically poor black women, were not getting the same quality of breast cancer care as wealthier and white women. Researchers have described this growing racial gap in cancer mortality as the “amenability factor.”18 As cancers such as breast cancer become more amenable to treatment interventions, racial cancer survival disparities widen because poor minority women do not have easy access to the lifesaving cures.19 Inequality in Quality In 2007,160-plus doctors, researchers, and community activists in Chicago convened the Metropolitan Chicago Breast Cancer Task Force to investigate the gap and decide how to close it. We analyzed the data. We drilled into the deaths. We held focus groups of black and Latina women on the South and West Sides. We heard their stories of fragmented and disrespectful health care in their communities. We released a report.20 It confirmed that access to quality of care was responsible for the wide racial gaps in breast cancer mortality. The report also made thirty-seven recommendations for closing the gap. Yet breast cancer researchers scoffed. They clung to the usual genetic and biological explanations. We fought back, pointing out the structural components of the death gap, both in Chicago and nationwide. Chicago’s gap was twice as large as the national gap and seven times larger than the gap in New York City, suggesting that geography is a significant variable.21 Cities like Memphis and every major Texas city had even larger breast cancer death gaps than Chicago’s.22 In Detroit, black and white women had the same terrible mortality rates. The cities with the greatest breast cancer death gaps were also the ones with the largest dissimilarity index scores, denoting advanced degrees of racial segregation.23 Moreover, biology cannot explain the variability in the racial death rates in cities within the same state. For example, in Los Angeles black women are 71 percent more likely to die from breast cancer than whites. In Sacramento and San Francisco this gap does not exist.24 A Map and a Story The task force published a map of Chicago showing the communities with the highest breast cancer mortality. Twenty-three were black communities and one was white. All were located on the West and South Sides. All the black communities were neighborhoods of concentrated US Health Care: Separate and Unequal * 119 Years Disparity ratios in breast cancer mortality between white and black women across New York City, the United States, and Chicago from 1990 to 2010 show that geography, more than biological and genetic factors, influences womens mortality. Source: Metropolitan Chicago Breast Cancer Task Force. poverty and disadvantage.25 In mostly black neighborhoods, not one hospital has earned the American College of Radiology’s seal of approval for breast imaging centers. Only one hospital in a high-mortality black neighborhood has been certified by the American College of Surgeons’ Commission on Cancer as a cancer treatment center. In contrast, in the white wards there are fourteen cancer accredited hospitals. This was a bleak picture of the structural nature of racial inequality. It’s one thing to look at disparity on a map. It’s another to hear from the women who try to navigate the fractured system of care. Chicago and other cities have a hodgepodge of public and private hospitals and clinics, with little communication between them and poor coordination of care. Barbara Akpan is a retired nurse in Chicago. After her breast cancer diagnosis and treatment at an academic medical center, she began serving as a volunteer community advocate for other African American women on the South Side. Her observations reinforce the notion that inequality in the quality of breast cancer care was failing women. “Many of the women I work with are afraid,” she said. “They do not trust the health care system. Many of the clinics and hospitals they go to do not provide the best care, or they simply give them the wrong Hospitals with American College o f Surgeons Approved Cancer Programs African American Community Areas with Elevated Breast Cancer Mortality In Chicago’s African American neighborhoods with high mortality for female breast cancer, there are few hospitals with American College of Surgeons-approved cancer programs. Consequently, black women with breast cancer concerns have to either travel for care or receive care at nonapproved cancer treatment sites. This map depicts how health inequality is structured into the geography of a region. Source: https:// link.springer.c0m/article/10.1007/s10552-009-9419-7. information. It’s hard to overcome the mistrust. For women in the southland—Ford Heights, Chicago Heights, Harvey, poor areas on the South Side—access to mammography screening sites is really poor,” says Akpan. “Women are falling through the gap—they don’t know where to go.”26 When we traveled around Chicago and other cities, showed audiences of black women the mortality curves illustrating the black breast cancer death gap, and gave our explanations, they cried. We had validated something they knew to be true: the systems that served them were often inadequate. They cried because our data told them that the breast cancer death gap was a system problem and not a problem within black women. Their reactions galvanized us to focus on fixing the system. Because the mortality gap was structural, we needed hospitals to work together to improve care for black women. We identified hospitals with undertrained mammography technicians and radiologists and arranged free continuing-education courses. We met with CEOs to share their hospital’s quality data and make recommendations for improvement. But this was not going to improve care fast enough. If a small inner-city hospital lacked the expertise to provide comprehensive breast cancer care, no amount of quality improvement would remedy it. But what if we could move women from poor institutions to good ones? Navigating to Quality We hired health “navigators.” These were community health workers and nurses who could direct women to high-quality hospitals for screening and treatment. We solicited breast cancer services from all the region’s top hospitals. Most obliged. The navigators guide their clients into care at the city’s highest-quality medical centers even when they are two hours and two bus transfers away. Sometimes the navigators battle with the local doctors to wrest the patient into better care. Gerri Murrah is typical of the patients navigated. She was 60 and developed a sore lump in her breast in 2015. Not having a primary-care physician, she had gone to her local emergency room. The doctor didn’t even consider cancer; Gerri was given antibiotics and sent home. Luckily, Murrah knew something was wrong and went to a different clinic and requested a mammogram. The results were suspicious. Murrah was assigned to a surgeon at a neighborhood hospital. This surgeon, not a breast specialist, made two bungles: Instead of doing a needle biopsy, he surgically removed the lump—a painful and unnecessary procedure. Then, without informing Murrah of the stage of her breast cancer (stage III), he recommended an unneeded mastectomy. When DeShauna Dickens, one of the task force n
avigators, finally connected with Murrah, she referred Murrah to the University of Chicago Hospital for a second opinion. There, Murrah learned she had other options that would preserve her breast. “DeShauna came in just in time to stop me from having my breast cut off,” she says, in an O, the Oprah Magazine interview.27 There are setbacks. Not all women respond. Not all institutions have the will to better their conditions. Some facilities were deplorable, such as the mammography facility in the Washington Park neighborhood’s Provident Hospital, which the task force staff visited in 2014. The room that was used to develop mammography films had a sewer manhole cover in the middle of the floor and was suffused with noxious sewer fumes. The path to improve quality and reduce mortality can be slow and painful. The Breast Cancer Quality Consortium Yet progress has been made. The grassroots team persuaded 160 health care providers across the state, including every Chicago hospital, to share their data, such as tumor detection rates and follow-up rates. Slow improvements in quality were made even in the poorly performing hospitals. In 2013, after seven years of work, the black-white breast cancer death gap in Chicago had narrowed by 35 percent.28 While the exact reasons for the improvement in the mortality gap are not easy to tease out, in no other metropolitan area of the United States has that death gap been reduced. The reduction in black breast-cancer deaths in Chicago shows that mortality inequities caused by structural violence are fixable. Focused and deliberate work directed at equalizing the health care system can save lives. Racial disparity can be reduced— and possibly eliminated. “We don’t need a magic bullet to fix this,” says Dr. Patricia Ganz, a member of the Breast Cancer Research Foundation Scientific Advisory Board and professor of medicine and public health at UCLA. “We just need to give black women the same standard of care.”29 Implicit Bias Contributes to Unequal Care While the story of the Chicago breast cancer death gap has had early success, in too many areas and on too many levels we are still dealing with the most basic inequities and prejudices. Bias, even if unconscious, affects individual physicians and their treatment decisions. This is unsettling but true. While most doctors do not exhibit explicit racial bias, such as refusing to treat certain patients because of their race, on tests of implicit bias they, too, show unconscious preferences for whites over dark-skinned faces. The Implicit Association Test is a widely used test of social cognition. More than 70 percent of the millions of Americans who have taken it exhibit a subconscious preference for whites over blacks.30 Physicians score similarly. An ingenious 1999 experiment showed how unconscious bias affects clinical decision making. Thousands of doctors were asked to test their clinical acumen by reviewing the medical history given by a performer who acted out the symptoms of a potential cardiac syndrome on film.31 There were eight elderly patients. Four were men: two white and two black. Four were women: two white and two black. Physicians were asked to recommend a cardiac workup based on the clinical information the patients relayed. In addition, physicians were told whether the patient was insured or uninsured. The results were not surprising. Based on the gender, race, and insurance status of the patient, doctors recommended entirely different medical workups. Men of both races were more likely to be referred for angiograms to evaluate symptoms of chest pain. But blacks of both genders were less likely than the whites to be referred for the full cardiac workup. Those who were noted to be insured were more likely to be referred for a full workup as well. While this was an experiment and not real clinical care, unconscious bias in health care delivery seems to be a real phenomenon. In an eye-opening 2002 report on health care disparities, the Institute of Medicine found “strong but circumstantial evidence for the role of bias, stereotyping, and prejudice” in perpetuating racial health disparities.32 Some research suggests that there is a direct relationship among physicians’ implicit bias, mistrust on the part of black patients, and clinical outcomes.33 In a prospective study of older adults, patients who experienced discrimination in health care more than once yearly were twice as likely to have a disability four years later than cohort members who suffered no discrimination.34 What needs to be done to address implicit bias in medicine? Awareness is a start. Mandatory bias testing and cultural intelligence training have been proposed. But it requires day-to-day interactions between people of different backgrounds to break the implicit boundaries that prevent deeper understanding.35 And that’s necessary, but fair. But bias is only a piece of the story. Having No Insurance Is Bad for Your Health Another major factor driving inequitable care is lack of health insurance. Uninsured adults are far more likely than those with insurance to postpone or forgo health care altogether. Twenty-five percent of adults without coverage say that they went without care in the past year because of its cost, compared to 4 percent of adults with private insurance coverage. Moreover, 55 percent of uninsured adults do not have a regular place to go when they are sick or need medical advice.36 When uninsured patients get injured or develop a chronic disease that requires follow up, they are less likely than those with coverage to actually obtain all the services that are recommended.37 Blacks and Latinos are more likely to be uninsured than whites, which only increases the burdens of health care inequity borne in neighborhoods of concentrated poverty. Prior to the Affordable Care Act, an estimated 45,000 residents died each year due to a lack of insurance, or one person every twelve minutes. If being uninsured was a cause of death, it would be the tenth most common one in the United States.38 The next chapter will deal further with the issue of health insurance. Apartheid Hospitals Once people do get insurance, there is no guarantee they will get good treatment. As Nobel Prize winner Angus Deaton has noted, “Hospitals in the United States are run on something close to an apartheid basis with few white patients in the hospitals that treat mostly African Americans and vice versa.”39 Hospitals in which the majority of patients served are minorities have higher mortality rates across the board, whether from trauma, cardiac surgery, or general surgery procedures. In fact, as the percentage of minority patients served increases at an institution, so do the mortality rates across many conditions. There seems to be a direct correlation between the proportion of minority patients served by a hospital and death rates.40 Take trauma care as an example. Trauma centers that serve mostly minority patients have higher mortality rates than those that serve mostly white patients. There is a gradation of trauma mortality based on the percentage of minority patients served by the trauma center. Those trauma hospitals with fewer than 25 percent minority patients have 60 percent better trauma survival rates than trauma hospitals with more than 50 percent minority patients. Hospitals with 25-50 percent minority patients have trauma mortalities in between the two.41 Why would this be? Trauma centers require specific levels of physician and other staff coverage, and they require periodic rigorous certification. Shouldn’t this attention and regulation lead to better care, regardless of race and ethnicity? There are only two possibilities. One is that trauma severity or high-risk conditions are more prevalent among patients in institutions that serve mostly minorities. However, even when severity of illness is controlled for, minority trauma centers have 37 percent h
igher mortality rates than those serving mostly whites. The other possibility is that the care is actually unequal. I have shown how this is true for breast cancer care. It seems to be true for many conditions. What hospital you attend is literally a matter of life and death. In general, hospitals and clinics where many minority patients receive care are lower quality than those that serve white populations, whether for medical or surgical conditions.42 Further, hospitals treating a higher proportion of black patients have higher mortality rates for many surgical procedures. In addition, these hospitals have higher mortality rates independent of race: both black patients and white patients have higher mortality in hospitals with mostly black patients than their racial counterparts in other centers.43 The federal Center for Medicare and Medicaid Services recently created a national star ranking system for hospitals, to allow consumers a means to assess hospital quality. A hospital can be ranked from five stars to one star, with five stars denoting a very high quality hospital with lower mortality and one star being a low-quality hospital with high mortality.44 In practice, star rankings vary by the whiteness of the hospital’s clentele. Five- and four-star hospitals in America serve patient populations that are predominantly white. One- and two-star hospitals in America serve predominantly minority paitients and very few whites. This is true for care at clinics as well as hospitals. The doctors who work at clinics that care for predominantly black and other minority populations are less likely to be board certified, have less access to specialty consultation, and work in more chaotic conditions. It is not a matter of the patients’ race or ethnicity. Hospitals and clinics in poor neighborhoods, those that serve uninsured populations or those on Medicaid, often do not have enough resources to provide the very best care.45 What seems at first blush to be a racial disparity is actually a consequence of structural violence and institutionalized racism. Just follow the money. Let’s compare the cash situations at two Chicago hospitals, both trauma centers. During my decade at Mount Sinai Hospital, located in a low-income black neighborhood, 20 percent of the patients had no insurance. Another 60 percent had Medicaid. The patient population served is virtually 100 percent black and Latino. If a white person happens to be hit by a car down the street from Sinai, then they might be brought there. Otherwise a white patient, or anyone who is well insured, would rarely set foot inside Sinai. Then there’s Northwestern Memorial Hospital. One of the top hospitals in the United States, on the US News and World Report Honor Roll, it towers over Lake Michigan about five miles from Sinai, in Chicago’s predominantly white Streeterville neighborhood. It has an A bond rating, and about 500 days of cash brimming in its accounts. This translates to $2 billion in bank reserves. Most of Northwestern’s largely white patient population has private insurance. A small number are uninsured. During my time at Sinai, there were often only a few days of cash on hand. Sinai had no bond rating—meaning no bank would lend it money for capital investments. Just as Lawndale had been redlined seventy years prior, Sinai and other hospitals that serve poor communities are redlined by the banking industry today, limited in their ability to borrow. Sinai has been an anchor in the Lawndale neighborhood since 1919, and it takes care of everyone who comes to its doors, regardless of ability to pay. The price of this noble mission is a hospital’s equivalent to a vow of poverty. From a banker’s perspective Sinai is a bad investment. Compare Northwestern and Mount Sinai’s spending on capital in 2012. Capital dollars reflect the amount of money that a hospital has to spend on patients, doctors, equipment, and upgrades. Northwestern spent $273 million on buildings and equipment. Sinai spent just $6 million.46 The failure of capital markets to support Sinai contributed to its chronic struggles to maintain service quality. If we really want to achieve equity in health care outcomes, then we have to invest more into the institutions serving those who need care the most, like Sinai. This means redistributing capital dollars based on need from Northwestern and its neighborhoods to invest in Sinai and its Lawndale neighborhood. This is just the opposite of how the American health care system works. In America we have arranged it so those who need it the most (often black people and other minorities) get less, while those with the most (white and affluent people) get the best care and facilities available in the world. It is no surprise that life expectancy in Northwestern’s neighborhood is 85 years. In Sinai’s neighborhood it is 72 years.47 Failure to Rescue When it comes to providing the highest quality of care, volume matters. The doctors and the nursing staff who are exposed to high volumes of particular kinds of cases have more time to hone their skills, and this leads to better outcomes. A surgeon who does liver transplants every week is better at them than one who does one per year. As for complex surgical conditions where high volumes of cases are crucial to achieve the best outcomes, nonwhite patients are more likely than whites to receive them at low-volume institutions. These patients are also less likely to be rescued if they deteriorate postoperatively. Procedural complication rates are exactly the same at high-mortality and lowmortality hospitals. So what is the reason for the death gap? The answer is culled failure to rescue. When a sick patient gets a complication, the doctors and nurses have to recognize and treat it—that is, rescue the patient from dying. Hospitals with well-developed systems to recognize complications and rescue patients have lower mortality.48 While all the components of rescue have not been identified, adequate nurse staffing and training is critical. The hospitals with the least capability to rescue—due to nursing shortages, lack of training opportunities for staff, or other factors—serve significantly more minority patients and suffer higher mortality rates.49 Truth or Consequences Cardiac surgery at Mount Sinai Hospital is an example of a low-volume and high-mortality program. Its struggles are instructive for understanding the day-to-day decisions in a poor hospital and how they lead to health inequities. When I worked there, the heart surgery program was small—about fifty cases each year. Programs this small have trouble maintaining quality because there is not enough repetition for all the staff who need to be in top form. In addition, because the capital investments required to maintain the service were so high, Sinai managers thought the limited capital we had should be invested elsewhere. So we closed the program and partnered with a nearby, higher-volume academic medical center (University of Illinois) to take our patients. It made sense. The neighborhood did not need a small, poorly functioning heart-surgery program. Then one day we had a patient in the cardiac-care unit with three blocked coronary arteries. He needed emergency bypass surgery. Our cardiologists inserted a special pump into his aorta to boost to his failing heart until lifesaving cardiac surgery could be performed. Time was critical. But the patient was uninsured, and the University of Illinois refused the patient. In desperation I phoned the chief of cardiology there. He recommended that the patient be discharged from Sinai and instructed to walk into the University of Illinois emergency room. Then, he said they would be required to treat him. I was shocked. Not only was this immoral, but it was medical malpractice. The patient was hooked to life support, teetering on the edge of death with an artificial heart pump attached to a blood vessel in his groin. Without surgery soon he would surely die. It took a call from our CEO to U of I’s CEO to get this patient transferred. After this event, against their better jud
gment, our cardiologists urged our CEO to restart cardiac surgery at Mount Sinai. Despite the low volumes, inability to guarantee quality, and high capital costs, it became a necessary investment. These are the choices faced by safety- net hospitals in communities of concentrated disadvantage. Provide nothing and let patients die from neglect; or provide the best care you can, at risk of higher than desired mortality, and hope to pull most patients through. More broadly, a 2014 study evaluated cardiac-surgery mortality in patients insured by Medicare. Nonwhite patients succumbed at a 33 percent higher rate than whites (after risk factors were controlled for). Thirty-five percent of the death gap was due to deficiencies in hospital quality. The highest-mortality hospitals were those that served predominantly minority populations. Both white and black patients who received their heart surgery at predominantly minority hospitals had higher mortality rates, suggesting structural factors were responsible. When we speak of institutionalized racism as a structural cause of premature death, it is not the virulent type of racism that we associate with opposition to the civil rights movement of the 1960s. It’s a more banal but deadly form of brutality woven into the tapestries of our institutions and thus harder to eradicate. I was not shocked by the study’s findings.501 knew that race itself—as a social marker—was not the reason for the cardiac mortality gap at predominantly minority hospitals; it was our tolerance for inequality in quality across our health care system. This becomes even more obvious when we contrast these findings with the outcomes in the Veterans Administration system, where care is structured the same way nationwide. In the VA system there is no equivalent racial heart-disease death gap.51 Inequality in Quality and Unequal Treatment It is not only in majority minority hospitals that black health-care inequities exist. When black and brown patients receive medical care in any setting, they are more likely than white patients to receive unequal care. This was documented in the Institute of Medicine’s shocking Unequal Treatment report, which synthesized hundreds of studies of age, sex, and racial differences in medical diagnoses, treatments, and health care outcomes. The report concluded that for almost every disease studied, black Americans received less effective care than white Americans. These disparities prevailed even among groups with identical socioeconomic or insurance status. Minority patients received fewer recommended treatments for diseases ranging from AIDS to cancer to heart disease.52 How much of the treatment gap is related to implicit bias, patient mistrust, physician practice style, or systematic organizational dysfunction is not known, but these gaps have persisted over the decade and more since the Institute of Medicine report.53 Each year since 2003, the Agency for Health Care Quality and Research has tracked progress on health care inequity across America, analyzing more than 250 quality measures across a broad array of settings and services. In the 2014 report, the agency reported no overall improvement in racial health disparities from prior years. Not one iota. The American Hospital Association Pledge In 2015, in response to years of intractable health care inequities, the American Hospital Association called upon CEOs of hospitals across America to sign a pledge to measure health inequities within their own institutions and to fix them. The Equity of Care Campaign to End Healthcare Disparities focus is on four areas. First, hospitals are to choose a quality measure that is important to their community. Next, they are to develop a plan to address a disparity, whether by race, ethnicity, or language preference. Third, hospitals are asked to provide cultural competency training for all staff or finalize a plan to do so. Finally, hospital operations teams are asked to initiate a dialogue with the board and leadership team about this disparity work.54 After over a century of documented health-care disparities, this step is important. But it is hardly enough. The nation’s hospitals have been organized for the most part to make money by attracting the best clientele with the best insurance policies. For most hospitals this means avoiding poor and minority neighborhoods. Those frayed and capital-poor hospitals that have made it their mission to care for poor and uninsured often struggle in poverty like their clients. Just as the neighborhoods of concentrated disadvantage were created by white and industrial flight and the expansion of neighborhoods of concentrated advantage, a similar phenomenon has occurred in health care. The nation’s wealthiest health care systems for the most part have avoided serving the residents of concentrated disadvantage by placing offices and hospitals only in white communities of advantage. So pledges are well and good, but without larger structural changes that level the insurance and capital decisions that underpin the health care system, health care equity will continue to be elusive. Only with national health insurance reform that begins with the idea of health as a human right could these structural issues be resolved. The Affordable Care Act, the most recent response to the need for health care reform, has tried to address these issues. However, as we will see, it has been an inadequate solution so far. HEALTH INSURANCE IN AMERICA You guys are evil. Canada’s the best country in the world. We go to the doctor and we don’t have to worry about paying him, but here your whole life you’re broke because of medical bills.1 J U S T I N B I E B E R It will not do to note that under the Affordable Care Act almost 90 percent of Americans currently have some form of health insurance, any more than it would do for a hotel to note that 90 percent of the time the roof over your bed does not leak when it rains.2 Of all possible ways to remedy structural violence in America, the creation of an equitable universal health-care system based on the idea that health care is a right, not a commodity, ranks high. While the health care law was a reform of the old system that saw fifty million Americans uninsured, the Affordable Care Act perpetuates health care inequity and fragmentation by its very design. Yet if Republican calls to repeal the law are heeded, we will be back to square one. And bad will revert to worse. I was not surprised that the solution for universal health care in the United States would be to prop up the existing costly, inequitable, and inefficient insurance system. In 2003 my wife and I cosponsored a fundraiser in Chicago for the then little-known Illinois state senator Barack Obama, who was running for the US Senate. In the living room of a modest single-family home in the neatly manicured South Shore neighborhood of Chicago, I asked the future president his position on national health-care reform. His words presaged what came to be known as “Obamacare.” “I’m a proponent of a single-payer system,” he responded. But he explained that the political power held by the health insurance companies was so formidable that opposing them would be political suicide. He noted that the insurance industry had over 250,000 employees across the country and a lobbying apparatus that had to be reckoned with in any drive for universal health care. “Single payer will never get passed in the United States,” he concluded. He was correct. Single payer did not even get a hearing. The Affordable Care Act was a modest reform of the existing tiered healthinsurance system, which treats health care as a commodity, not a human right. The coverage provisions in the Affordable Care Act built on and attempted to fill in the gaps in a piecemeal system that had left many without affordable coverage. There have not been impressive gains since the passage of health reform.3 A net of twenty million mor
e people gained health insurance coverage between 2013 and 2015. Medicaid has expanded in thirty-two states and the District of Columbia, providing new access to coverage to millions of previously uninsurable Americans.4 The Affordable Care Act has been successful in reducing the number of uninsured, but about 30 million Americans remain uninsured.5 Most important, the Affordable Care Act fails two critical parameters of health justice: it is neither universal nor equitable. Elegant, Equitable, and Not to Be The most elegant, comprehensive, fairest, and lowest-cost solution to the health care crisis would have been to expand and improve the Medicare insurance plan to cover all Americans.6 Medicare, enacted in 1965 as a single governmental payer system to provide health insurance for Americans 65 and older, has been well liked since its inception. Before Medicare, 48 percent of such Americans had no insurance; now only 2 percent are uninsured. In addition, before Medicare 56 percent of senior Americans paid out-of-pocket health care expenses, compared to 13 percent now.7 Satisfaction with coverage is substantially higher among Medicare recipients than for those who have private insurance. Only 8 percent of Medicare enrollees report their experience as fair or poor, compared to 20 percent of those with typical employer-based health insurance coverage and 33 percent of those who purchased private insurance directly.8 Moreover, the costs of administering the program are substantially lower than those of private insurance companies—only about 2 percent of the total cost for Medicare, compared to 12 percent for the least expensive insurance company’s overhead charges.9 Most important, experts estimate that since its inception Medicare has added five years to the life expectancy of older Americans.10 Polls have shown that universal government-sponsored health coverage is preferred by half of Americans.11 And an improved Medicare would be an entitlement available to all Americans, with the exact same benefits for the wealthy and the poor. Medicare for all would achieve the goal of universal access to health care. As an entitlement for all US citizens (and extended to noncitizen residents), access to health care would be a right. This would contribute to the improvement of the life expectancy gap between rich and poor. Plus it would save an estimated $400 billion yearly by eliminating administrative waste.12 So if one wanted to solve the problem of the uninsured and reduce the death gaps between rich and poor, expansion of Medicare with other enhancements would have been the most logical approach. This is not a radical idea. Thirty advanced industrialized nations have forms of universal health care.13 Canada has a “Medicare for All” health insurance with easier access to care, lower costs, and better health outcomes (including life expectancy) than those of the United States. The evidence is compelling. While health inequity has not been eliminated in Canada, the differences between poor and rich are not as striking as they are in the United States.14 In Canada, men in the poorest urban neighborhoods experienced the biggest declines in mortality from heart disease from 1971 to 1996.15 Life expectancy gaps between income groups declined during that period as well. Poor Canadians with cancer had better survival than poor people from Detroit, an outcome The Poison Pill: Health Insurance in America * 135 136 * CHAPTER TEN attributed to the Canadian system.16 Of all the major Western economic powers, the United States is the only one without a universal health care system in which health care is considered a human right.17 Rather than treating access to health insurance as a universal right, the language of the Affordable Care Act endorsed the idea that health care is a mandate.18 The difference between health care as a right and health care as a mandate is critical, as these conceptions lead to very divergent solutions. If health care is a right, universal health care is an entitlement that should be the same for all citizens. If health care is a mandate, however, then there is no such entitlement, and health care is a commodity to be bought and sold. The Affordable Care Act established the mandate as a core component of health care coverage, perpetuating the complex system of multiple payers, limited access, variability in quality of care, high costs, and large rich-poor life expectancy gaps. Obamacare and Beyond The 2010 Affordable Care Act remains the most significant overhaul of the American health care system since the passage of Medicare in 1965, expanding insurance coverage to millions. The law survived multiple attempts by Congress and two Supreme Court challenges that aimed to gut its major provisions.19 As a reform of the current for-profit insurance marketplace, the Affordable Care Act addressed two major gaps in the existing system. First, it allowed young adults to stay on their parents’ health insurance until the age of twenty-six—a popular provision that benefits almost eight million Americans.20 The second major reform prevented insurers from denying coverage to people with preexisting medical conditions. Medicaid was expanded to include millions of previously uninsurable individuals who had been excluded from the health care system. Uninsured rates among whites, blacks, and Hispanics dropped, narrowing though not eliminating racial and ethnic insurance coverage gaps.21 At the same time, the Affordable Care Act incorporated the worst aspects of our fragmented for-profit health insurance system. The tiered system of insurance—where the coverage options for the poor are markedly different from those for the rich—has further hardwired inequity into the law. In 2004 there were fifty million people without health insurance in the United States. That year the Institute of Medicine published a report, “Insuring America’s Health,” that outlined the principles against which any health reform legislation would have to be measured.22 The institute identified the ideal system as having “universal, continuous insurance coverage that is affordable and sustainable for individuals, families, and society, and should enhance well-being through care that is effective, efficient, safe, timely, patient-centered, and equitable.” Eleven years later, none of these standards was being met. Even after the passage of the Affordable Care Act, there are around thirty million Americans without insurance and an equal number of underinsured who have health insurance policies but with deductibles and copayments that are high enough to deter care.23 How did the United States end up with a more fragmented, more costly, and more confusing health care system? Simply stated, collusion between members of Congress and entrenched corporate health insurance and Big Pharma interests precluded a more equitable and lower-cost solution. What Americans got with the Affordable Care Act was complicated insurance marketplaces in every state with a complex array of confusing private insurance products. The health reform process exposed, in the words of the British medical journal The Lancet, “how corporate influence renders the US Government incapable of making policy on the basis of evidence and the public interest.”24 When the moment arrived to consider having a Medicare-like “public option” on the state exchanges to compete with private insurance companies, Senator Joseph Lieberman of Connecticut, the deciding Senate vote, deep-sixed the idea by threatening a filibuster.25 The capital of Connecticut is Hartford, the home of Aetna, one of the big five health insurance companies. Skin in the Game There are three major structural flaws in the Affordable Care Act, all of which could be solved by a single-payer system. The first flaw is The Poison Pill: Health Insurance in America * 137 138 * CHAPTER TEN that the insurance expansion is neither universal nor equitable. For example, because mandatory Medicaid expansion was blocked by the
Supreme Court, nineteen states have left millions of poor people uninsured. 26 These states account for over half of poor uninsured blacks, single mothers, and the country’s uninsured working poor. For poor people in these states, it is as if Obamacare was never enacted. Note that for the most part these states that have refused to expand Medicaid are the former Confederate slaveholding states, accentuating the legacy of structural racism. Access to specialty care for those who receive Medicaid coverage is limited compared to access for patients with private insurance.27 More than one-third of US doctors refuse to take Medicaid—another structural barrier.28 The second flaw is that premiums, copays, and deductibles for private health insurance and products on the marketplaces are prohibitively high for many people, especially the working poor. In 2015 average annual premiums for employer-sponsored health insurance were $6,251 for single coverage and $17,545 for family coverage. Between 2014 and 2015, premiums increased by 4 percent, while during the same period workers’ wages increased 1.9 percent. Premiums for family coverage increased 27 percent during the last five years, while cost sharing has skyrocketed.29 The average individual deductible across the marketplace plans in 2016 was $5,765 for bronze plans. After the deductible is paid, an individual with such a plan will face 40 percent copays for services.30 Insurance companies have reacted to their rising costs by creating narrow networks of providers and hospitals.31 This limits choice of patients by restricting the doctors and hospitals whose services they can use. At the heart of the Affordable Care Act are subsidies for the working poor to pay for health insurance premiums.32 The goal was to keep these premiums within reach of most Americans. It was a sweet deal for the insurance companies. The insurance companies are guaranteed to get their premiums; the federal government poured billions of dollars into their coffers. In exchange, an individual gets an insurance card. But with that card came unprecedented out-of-pocket expenses that kicked in before the insurance company paid one cent.33 The belief is that without “skin in the game,” the newly insured will overuse the system. As a result, coinsurance and deductibles that many Americans now are forced to pay have skyrocketed across the insurance markets. Yet every study ever done on the impact of copays and deductibles (even for middle-class people) is that they cause individuals to delay medical care.34 Under a single-payer health care system there would be no copays or deductibles. Obamacare Bullshit The third flaw of the Affordable Care Act was that long-term doctorpatient relationships have been disrupted by insurance restrictions. President Obama said, “No matter how we reform health care, I intend to keep this promise: If you like your doctor, you’ll be able to keep your doctor; if you like your health care plan, you’ll be able to keep your health care plan.”35 This turned out to be untrue. Windora Bradley, a year before her stroke, struggled to pay her health insurance premiums. Faced with the dilemma to buy food or go without medications, she chose to go without medications. At one of her office visits, she let loose. “I’m tired about this Obamacare bullshit,” she shook her head, frowning as her jowls quivered. “I worked for thirty-five years. Those people on welfare who never worked are getting free health care. I am paying $700 each month and there is not enough left for medicines and food. That’s not right. That’s why I call it Obamacare bullshit.” Windora lived on a pension of about $1,000 per month. Most went for the premiums on her health insurance, which she still received through the Chicago Board of Education. She scrimped and saved to pay for her medications for her diabetes, hypertension, asthma, and vascular disease. Her situation is common among the working poor. Windora was ultimately able to get insurance on the marketplace that reduced her premium costs but not her out-of-pocket expenses. At first she purchased a Blue Cross insurance plan that she was told my hospital accepted, but this proved incorrect. She then had to purchase a more expensive plan to stay with me. Meanwhile her two sisters, who The Poison Pill: Health Insurance in America * 139 140 * CHAPTER TEN had also been my patients for over thirty years, had to switch doctors because my group did not accept the insurance they enrolled in. A number of my long-term patients found themselves in this dilemma. In 2015, after her stroke, Blue Cross dropped my hospital and many others from the plan Windora had just purchased. There was only one plan, from United Health Care, in all of Cook County that included my hospital and me in the network. The week after Windora signed up for it, United Health Care let it be known that it was considering withdrawing from all the exchanges in 2017.36 In three years of the Affordable Care Act, Windora had purchased three different insurance policies just to retain me as her physician. In the fall of 2016, United Health Care announced it would drop my hospital from its network, and Windora, now wheelchair bound and speechless, is forced to find another doctor (to say nothing of her many specialitsts) after thirty-six years. For someone like Windora with complex medical and social obstacles, keeping a team of providerss who are familiar with her medical travails is essential to getting good care. For me, her longtime doctor, it is a gut-wrenching experience. The fact is that Obamacare, despite its modest benefits, does not remedy American health care inequity. It will never achieve universal coverage. Eleven million noncitizen residents will never be eligible for its benefits. Thirty million people will remain uninsured. While insurance coverage has increased for all races, there is still a large racial and ethnic gap in insurance coverage, which will perpetuate health disparities. For those with health insurance, spiraling copays and deductibles have made access to care more difficult. Finally, by allowing a dizzying array of for-profit insurance carriers with high administrative overhead expenses, the Affordable Care Act as currently configured will not control costs. In 2016, the third year of Obamacare, insurance companies asked for double-digit increases in premium prices, as they claimed costs of delivery had outstripped the revenues. Meanwhile, health insurance stocks are trading at all-time highs, while patients like Windora Bradley face rocketing expenses and uncertainty about the future.37 The Poison Pill: Health Insurance in America * 141 A Call for Single Payer I speak for many of my health care colleagues across the nation when I say that the Affordable Care Act is a disappointment. In contrast, an improved and expanded Medicare for All would achieve truly universal care, affordability, equity, and effective cost control. It would put the interests of our patients—and our nation’s health—first. By replacing multiple private insurers with a single nonprofit agency like Medicare that pays all medical bills, the United States would save approximately $400 billion annually. Administrative bloat in our current private-insurance-based system would be slashed. That waste would be redirected to clinical care. Copays, coinsurance, and deductibles would be eliminated. A single streamlined system would be able to rein in costs for medications and other supplies through the system’s strong bargaining clout—clout directed to benefit health, not profits. Finally, it would create an equitable system of care that would provide equal access to rich, poor, black, and white. As a result, life expectancy gaps between rich and poor would narrow. Hospitals that serve poor communities would have access to capital investment based on need. It has been done in other countries, and it can be done in the United States. Single-payer health care sta
nds in stark contrast to the ACA’s incremental reform. Yet it is important to remember that enactment of a single-payer system requires the defeat of deeply vested, deep-pocketed ideological opponents, health insurance conglomerates, and a thick alliance of health care constituencies along with other interest groups. The Affordable Care Act, passed by a Democratic majority and signed by a Democratic president, was a weak compromise that left the foundations of our flawed $2.9 trillion health care system intact. It will be some time before political conditions are again right to tackle an improved Medicare for All. So why, given these hurdles, do I (and many other health care providers) persist? I persist because I have watched too many patients suffer and die because they lacked health insurance or had the wrong insurance card. I persist because I have witnessed the racial and ethnic death gaps enabled by our current health insurance arrangements. I persist because simple fairness dictates that health care is a fundamental human right. I persist because of patients like Win142 * CHAPTER TEN dora and Sarai, who deserve better. For those who counter that single payer is too expensive or politically unfeasible, we persist because the American ideal of “life and liberty” cannot be achieved without an equitable and universal health care system. Winston Churchill reportedly said, “You can always count on the Americans to do the right thing… after they have tried everything else.”38 We have tried everything else. I look forward to being part of a single-payer health care system that values the health of individuals, families, and communities as a common good—where health care is valued as a human right. Someday.
Medical research reforms improve access and distribution of treatments while preventing racist malpractice.
Harriet A. Washington 7, Writer, Washington was Health and Science editor of the Rochester Democrat and Chronicle. In 1990, she was awarded the New Horizons Traveling Fellowship by the Council for the Advancement of Science Writing.[4] She subsequently worked as a Page One editor at USA Today newspaper, before winning a fellowship from the Harvard School of Public Health.[5] In 1997, she won a John S. Knight Fellowship at Stanford University, and in 2002 was named a Research Fellow in Medical Ethics at Harvard Medical School.[6], “Medical Apartheid, A dark History of Medical Experimentation on Black Americans from Colonial Times to the Present,” Epilogue, pp 423-442.
EPILOGUE Medical Research with Blacks Today The voluntary consent of the human subject is absolutely essential. —THE NUREMBERG CODE In this book, I have traced the long, unhappy history of medical research with black Americans. I have detailed how blacks have been convenient, ;powerless, maligned, and abused subjects of profitable medical research and also how their treatment has changed over the years. Slaves were physically forced into painful medical bondage, their bodies were forced onto the stage of medical experiments to lend credence to claims of black inferiority and difference, and black bodies were even conscripted for anatomical dissection after death. Blacks were made subjects of experimentation that served to denigrate their intelligence or to provide distorted justifications for their enslavement. The reproductive rights of blacks also have been subjugated via fraudulent research up to the present day. Groups of vulnerable blacks, including children, soldiers and prisoners, have been consistently targeted. Both the federal government and private corporations have devised large-scale research abuses that range from radiation experiments to biological-weapons development. This medical ill-usage has not strictly paralleled scientific knowledge: Rather, it has mirrored the larger American cultural beliefs as well as politics and economic trends. Once, black Americans enjoyed the sparsest of legal and social protections, nearly universal abject poverty, and few health-care options. But this social and legal landscape has changed dramatically, and so have research practices. Where We Are Today Today, the worst abuses are mostly memories, although some forms of abusive research persist, and a few new issues have arisen. However, today’s offenses pale beside those our forebears survived. Today, much medical research is more than safe for African Americans; it is necessary. This may seem a strange message for a book that has described so many racial research abuses, but this volume’s frankness is an essential prerequisite for asking African Americans to consider participating in medical research. No one can dismiss blacks’ historically grounded fear of research and retain any credibility. We must acknowledge the past in order to regain trust and to seize the future. But medical abuse is more than historical fact. Although less rife, it remains a contemporary reality, and an ever-present possibility. The challenge is to prepare the way for a new openness to medical research on the part of African Americans while maximizing their protections from abuse. I do not see how this can be accomplished without candor, because the traditional strategy of ostrichlike denial merely heightens mistrust. To gain trust, we must first acknowledge the flagrant abuses of the past and the subtler ones of the present, yet much of the popular argument around medical experimentation and African Americans is dictated by culture and politics, not historical fact. The scientific camp includes most physicians, medical researchers, and others of all racial groups who pride themselves upon their educational sophistication. They tend to deny all present research dangers and most past ones, dismissing fears as emanating from those who are uneducated about the legal protections governing research or so credulous as to believe unsubstantiated rumors about the medical targeting of blacks. Mainstream medical scientists, journals, and even some news media fail to evaluate these fears in the light of historical and scientific fact and tend instead to dismiss all such doubts and fears as antiscience. The potentially damping effects on medical research, not the facts, become the focus of most discussions of troubled experiments. Like the medical school professor whose horror at my choice of topics I described in the introduction, many claim that any acknowledgment of abuse will drive African Americans from sorely needed medical care. However, a steady course of lies and exploitation has already done this. A 2002 American Journal of Law and Medicine article estimated that as many as twenty million Americans have enrolled in formal biomedical studies—but fewer than 1 percent are African American.1 Yet the focus on African American fears is misplaced. A January 2006 Public Library of Science study entitled “Are Racial and Ethnic Minorities Less Willing to Participate in Health Research?” examined the consent rates of twenty research studies that reported consent rates by race or ethnicity for more than 70,000 individuals. It found only slightly lower consent rates for blacks compared to (non-Hispanic) whites. The investigations ranged from interviews to drug treatment to surgical trials. Yet blacks are significantly less likely to be included in clinical trials, which suggests that some factor other than consent is implicated. Studies such as those mentioned in chapter 11 already show that black children are more likely to be used in nontherapeutic, harmful studies than in therapeutic investigations. Future research may document that this is true for black adults as well. In short, many scholars such as Tuskegee Bioethics Center director Dr. Vanessa Northington Gamble aver that the true focus should not be on the aversion of black subjects but rather on the untrustworthiness of American medical research when it comes to studies involving blacks. This book certainly documents this ethical deficiency. Although the focus of this book is clearly on experimental abuses of a vulnerable population, I do not want to leave the impression that I am advising people to avoid potentially beneficial medical experimentation. Quite the contrary. African Americans desperately need the medical advantages and revelations that only ethical, essentially therapeutic research initiatives can give them. The reticence of African Americans is the reasonable and understandable result of a horrendous history, but it lags behind progress. African American absence from research reflects the realities of yesterday, not today. More to the point, this aversion is a reaction black Americans can ill afford. For this book to have the most value, I ask readers to hold two seemingly contradictory but actually complementary facts in mind. The first is that African Americans must welcome and embark upon medical research as a bridge to fording the gulf that yawns between the health profiles of sickly enfranchised blacks and those of healthy, long-lived whites. The second fact is that African Americans must remain wary of research abuses. They are rarer, but the potential for exploitation and abuse still looms. Physicians, patients, and ethicists must also understand that acknowledging abuse and encouraging African Americans to participate in medical research are compatible goals. History and today’s deplorable African American health profile tell us clearly that black Americans need both more research and more vigilance. The worst abuses no longer occur and others are becoming far rarer, in part because the media exposure of racial research scandals has led to public condemnation. This, in turn, has helped to support the enactment of stiffer laws carrying real penalties rather than yesterday’s toothless codes, such as that written at Nuremberg. This matrix of legislation is not perfect, but it reduces the unabashed use of African Americans as duped or unwitting research subjects. Sociopolitical changes have also helped in this regard. There are no more “separate but equal” hospitals to provide powerless research fodder. There are no more nakedly vulnerable black people without the protection of the law; there are no more hospitals devoid of those black physicians who can protest racial dichotomies in patient treatment. Black physicians, researcher
s, and journalists now join the white professionals of conscience who have brought such abuses to attention and to a stop. The news media may not always discern and detail the patterns underlying problems with new therapies, but they do regularly expose research abuses. Government has shown itself more likely to close down entire university research programs under the aegis of the FDA when embarrassed by federally sponsored abuse. Closure is a fate that has been suffered by even premier universities, from Duke to Johns Hopkins. Most universities have heeded the message. All this amounts to a limited but real success story. African Americans are no longer the primary targets of research, exploitation, and abuse. Research ethics and policies have evolved to the point where the worst abuses of blacks are but a bad memory. That’s the good news. Africa: Continent of Subjects The bad news is that the racial mythology, the medical exploitation of black bodies for profit, and even the instances of medical sadism that threatened African Americans in the past have been exported to Africa. The recent history of medical research in Africa parallels closely that of African Americans in the United States a century ago. Colonialism and its residual racial and class separations have isolated blacks in hospitals or hospital wards away from whites, just as segregated hospitals once provided exclusively black subjects for white doctors. Laws that offered few or no protections for abused blacks have emboldened unscrupulous physicians and researchers who put curiosity and profits above the rights and welfare of their black patients. Western physicians, scientists, and pharmaceutical companies need large pools of people for Phase I trials, and they have swarmed Africa as they once flocked to prisons. U.S. researchers who can no longer conduct trials at home without intense scrutiny from the FDA and the news media have moved their operations to sub- Saharan Africa to exploit the public-health vacuum that once condemned black Americans. “To get around consent forms and a skeptical public, many researchers are turning their attention to African and other developing countries,” Robert F. Murray, Jr., M.D., chief of the Division of Medical Genetics at Howard University, has observed. “I would say the greatest chance for injury is in the Third World, where people don’t even know research is going on and don’t have a clue.” The long history of how Western investigators have taken their more questionable research initiatives to Africa is well documented in works such as Dr. Wolfgang U. Eckart’s Medizin und Kolonialimperialismus. In it, Eckart details how, in a ghastly dress rehearsal for Dachau, nineteenth-century German scientists conducted genocidal experiments on Africans, especially the Herero of Namibia.2 The United States, like Europe, has long used its nonwhite colonies and territories as its laboratories. For example, Richard Strong, M.D., used prisoners in the Philippines to conduct deadly malarial experiments, and chapter 8 relates how Brazilian, Mexican, and Puerto Rican women have more recently been used for birth-control trials that maimed and killed many.3 Warwick Anderson, M.D., documents how colonizing nations, including the United States, have used often-mythical racial differences, including the purported infectious-disease immunities of Africans, to further colonial aims and to justify the use of natives as workers in dangerous environments—just as U.S. slave owners once did. In much of Africa, Asia, and South America, a wide understanding has reigned that ethical rules governing medical experimentation were not “for natives.” Henry Louis Gates, chairman of African American Studies at Harvard University, recalls encountering such persistent racial myths during his undergraduate studies. “I was premed at Yale and took a year off to work at a mission hospital in Tanzania, where the doctors were all Australians. I was only twenty-one years old and I gave anesthesia to patients. I was shocked by the fact that when patients were writhing in pain, the doctors would say, ‘They don’t experience pain the same way we do.’ I was totally disgusted. I complained loudly and called them all racists, of course. But this illustrates how it is always easier to distance oneself from the pain of ‘the other.’” The use of poor people of color abroad by American scientists today enables researchers to escape both the strictest scrutiny of institutional review boards and the gaze of the FDA, says Murray, who issued a prescient warning in 1994: “People are going overseas trying to do research in Africa. They are saying, ‘We don’t have to go through all that IRB stuff to study AIDS, sickle cell and other diseases. This sort of questionable research is now going on in Africa and Third World countries because there are plentiful patients and the scientists are not subject to the same restrictions they are now subjected to here.” The Third World has become the laboratory of the West, and Africans have become the subjects of novel dangerous therapeutics. In 2002, the hormones of “Bushmen” were mined for potential weight-loss therapies;4 human growth factor was tested on Pygmies before being used on Western children;5 and Depo-Provera, although a carcinogen, was tested on Zimbabwean women before it was introduced into the United States as a reproductive injection. American firms tested artificial blood on unsuspecting black South African hospital patients, at the cost of at least twenty deaths. Harvard tested HIV therapies through research that would have violated ethical requirements for Americans. Some of the research on Africans by Western scientists has been more subtle but equally troubling from an ethical perspective. For example, trypanosomiasis, or sleeping sickness, kills as many as half those it infects in the central African regions of Uganda, the Democratic Republic of Congo, Sudan, Ethiopia, Malawi, and Tanzania. Melarsoprol, the only effective treatment, is a very toxic compound of arsenic and antifreeze that kills one in five people who take it. By 1995, the pharmaceutical firm Aventis had completed research demonstrating that its drug eflornithine was effective against sleeping sickness, although not against cancer, as the firm had hoped. But the company decided to abandon its use against trypanosomiasis, due to high production costs and low profits. It began seeking other profitable uses for the drug, and U.S. researchers soon found one: Eflornithine effectively banished facial hirsutism in women. Aventis and later Bristol-Myers Squibb began marketing the drug as Vaniqa, because many American women were able to part with fifty dollars a month to keep their faces free of hair, while few Africans were able to pay fifty dollars monthly to save their lives. It is completely understandable that the firm should focus its resources upon the profitable depilatory use of their medication, but it is disappointing that it chose not to make the drug available cheaply to Africans in order to vanquish sleeping sickness. Doctors Without Borders forged a coalition, which included Bristol-Myers Squibb, Bayer, and the Bill and Melinda Gates Foundation, to provide drugs to Africans through 2006, but although sleeping sickness threatens sixty million people, only 7 percent of these have access to adequate medical treatment.6 Medications considered far too dangerous or too hopelessly tainted for testing in the West have been introduced into clinical trials with unsuspecting African patients. Within the past decade, even the infamously teratogenic drug thalidomide has been tried on Africans as a treatment for leprosy—forty years after it produced twelve thousand horribly deformed babies around the world. FDA researcher Frances O. Kelsey, M.D., refused to approve thalidomide as a treatment for morning sickness in the 1950s because she determined that clinical trials did not demonstrate its safety; her caution saved most American infants the fate suffered by English and Europeans whose mothers took the drug.
(Only those U.S. babies whose mothers received thalidomide samples from their physicians were affected.)7 But Third World women subjects of thalidomide trials for leprosy and AIDS were not warned of the horrible birth defects the drug can cause. African experimental subjects, like the slaves of antebellum America, are legally vulnerable, relatively powerless, and racially distinct. Like black Americans after the Civil War, Africans’ poorer health and vanished healthcare infrastructure make it easier to pass off nontherapeutic research as medical therapy or to impose participation in research as a condition for therapy. The U.S. physician-researchers who descend upon Africa in search of subjects frequently characterize their work as therapy, offering experimental solutions for medical disasters. When physicians offer Africans the same therapeutics they offer Westerners, they can lay claim to unalloyed beneficence. But the Western standard of care is not being offered; usually poor black Africans with no access to medical attention are offered treatments that are new or untried. Sometimes U.S. researchers appear in the midst of an epidemic against which the stricken Africans have no medication and offer experimental treatment. During the height of a 1996 meningococcal meningitis epidemic, for example, scientists offered Pfizer ’s experimental drug Trovan (floxacin) to terrified parents in Kano, Nigeria. Nigerians desperate for medical attention grasped at Trovan’s straw. By the time the experiment ended, two hundred children were left severely disabled and eleven were dead. In 2001, at least 211 Nigerian parents sued New York–based Pfizer, Inc., alleging that non-FDAapproved experiments had killed or injured their children; that Pfizer failed to obtain the requisite approval from local leaders; and that the pharmaceutical giant failed to administer standard therapies with proven efficacy, such as Pfizer ’s own ceftriaxone to those children who continued to deteriorate after being given Trovan. Peter Ebigbo of Childrights Africa told Inter Press Service, “Our leaders must not allow Nigerians to be used as guinea pigs by any company to make money.” Pfizer counters that it treated ninety children with Trovan and ninety-seven with ceftriaxone, and that it obtained all the necessary approvals. However, Dr. Sadiq Wali, chief medical director of the Aminu Kano Teaching Hospital, says the hospital’s medical ethics committee never gave Pfizer the required approval to use the drug at the infectious-disease hospital in Kano. “Pfizer did not do that. I am not sure if they had the consent of the people used as guinea pigs, because that means informed consent in medical parlance. Such consent has to do with the patients being told the good as well as the side effects of the drugs to be administered,” said Dr. Wali. But documenting Trovan’s effects on these patients for the lawsuit would prove tricky: The medical records of 350 meningitis patients treated between April and June 1996 have disappeared from the hospital.8 The dearth of health care in much of Africa and the Third World makes its peoples vulnerable to experimental abuse. One cannot generalize about a continent as large and diverse as Africa. There are wealthy countries as well as poor ones, and a few health-savvy nations, such as Cameroon, could teach us a thing or two about providing health care to all our citizens. But much of sub-Saharan Africa has been devastated by colonial rape and depletion. These have left poor health, a ravaged health-care infrastructure, and few physicians in their wake. A mere 750,000 health workers care for the continent’s 682 million people. The Organisation for Economic Co-operation and Development estimates that this represents a health-care force that is as much as fifteen times lower than in OECD countries. Only 1.3 percent of the world’s health workers practice in sub-Saharan Africa, but the region harbors fully 25 percent of the world’s disease.9 A bare minimum of 2.5 health workers is needed for every one thousand people, but only six African countries meet this standard. Instead, the average in sub- Saharan Africa is 0.8 health workers per one thousand people—less than onethird the minimal standard. To achieve the minimum health-care staffing level will require an infusion of one million health workers into the continent. Safe devices are as scarce as doctors. Reused SUDs (single-use devices) and unsterilized needles help to spread AIDS and other infectious illnesses throughout Africa. The medically damaging injection practices and use of ethically suspect research has fomented a loss of trust in vaccines in Nigeria. Much of the news coverage focuses upon the contentions by suspicious Africans that the administration of Western vaccines spreads HIV and causes sterility.10 But no matter whether these fears are correct or imaginary, the practical result is unambiguous: suspicious patients avoid care, and this iatrophobia means that “conquered” diseases such as polio are seeing a resurgence on the continent. A burgeoning research culture is thriving in the midst of this desultory public-health activity and therapeutic vacuum. While the continent’s wounds go unbound, research is big business in Africa. Seventy billion dollars is spent each year on medical research, but only 10 percent is devoted to diseases that cause 90 percent of the global health burden.11 This dichotomy provides an incubator for research abuses. Surrounded by pain, death, and infection, desperate, medically ignored Africans are confronted with a Hobson’s choice: experimental medicine or no medicine at all. Western researchers who conduct investigations in the Third World are supposed to elicit the approval of their home medical institutions. For example, most university policies align with FDA regulations that require treatments given to the control-group members must be the standard of care for the treatment of the illness. Thus if one wanted to test Trovan in Connecticut, the protocol or research plan would stipulate that researchers must give the control group the best drugs known to treat meningitis, a drug such as ceftriaxone. Under some conditions, generally when no effective treatment for a condition exists, control-group members receive a placebo, an inert substance or a sham technique that does not offer any intrinsic therapeutic value but allows scientists to compare results between a treated and an untreated group. But placebo studies, which are falling out of favor in the West, are completely inappropriate for serious diseases for which effective treatment exists. You cannot ethically justify withholding, for example, an efficacious drug such as AZT from HIV-positive people or people at high risk of contracting HIV just to determine whether protease inhibitors work better than nothing. You must give the tested group protease inhibitors and the control group either AZT or the best-known standard therapy. Tossing the people in the control group placebos, vitamins, or antibiotics would doom the control group and so would be an unacceptable ethical breach—at least in the West. However, American IRBs treat Africans as second-class subjects and employ different standards for evaluating study designs in Africa than those used in the United States. Requiring evidence that the drug being administered meets or exceeds the standard of medical care is de rigueur for Western trials, but university IRBs now employ an ethical sleight of hand to stipulate that the tested drug must meet or exceed the standard of care in the country where the study is being evaluated. In impoverished, medically underserved sub-Saharan African countries, that standard of care has historically tended to be nothing. Americans who conduct research in African venues are supposed to seek the consent of their subjects. But this has never been a popular move, as the exasperated 1964 complaint of Dr. Francis D. Moore, a Harvard surgeon whose photograph had graced the cover of Time a year earlier, illustrates. Several years ago an individual from this country went to Nigeria to
try out a new measles vaccine on a lot of small children. Now how exactly are you going to explain to a black African jungle mother the fact that measles vaccine occasionally produces encephalitis but that more important than that it might sensitize the child for the rest of his life to some other protein in the vaccine? We now know that any sort of immune response excites cross reactions. For example, if a person develops a heightened immune reaction to some specific antigen such as typhoid he will be found to have other high titers against non specific antigens at the same time. In fact, there is a suspicions [sic] that some of the so-called auto-immune diseases are aroused by exposure of the reticuloendothelial system to completely different antigens. The possibility therefore arises that measles vaccines applied to thousands and thousands of children might excite in some of them such diseases as thyroiditis and ulcerative colitis. Can you imagine trying to explain that to a jungle mother? …One of the greatest assets of a good doctor is the ability to look a patient in the eye and have the patient go along with him on a hazardous course of treatment…. The same quality is exhibited by a medical experimenter when he looks at [a] patient and says that he thinks everything is all right.12 Moore avoided the troublesome task of individual disclosure and consent, and so do many researchers in Africa today, who do not want to take the time to translate their proposal into the local language and culture. They do not want to explain to hundreds or thousands of subjects such risks as iatrogenic encephalitis and sensitization—concepts that would have been as murky to a Connecticut homemaker in 1964 as they were to Moore’s “jungle mother.” These scientists do not want to risk having the subjects reject the experiment once they understand the possible health costs. Neither do they especially want to explain why they are testing a new therapeutic approach to HIV thousands of miles away from the millions of cases in their own country. Moore doesn’t mention this sort of question in his tirade against informed consent, but I suspect that it is the more difficult of the questions his jungle mother might put to him today. The Erosion of Consent Unlike the disastrous Third World research trends, medical research with black Americans has lost so much of its historically abusive nature that black Americans should embrace new medical research—after judicious inquiries of their own into any study they are considering. But there are still issues that must be addressed, and until these problems are rectified, black Americans must embrace medical research warily. These issues include the recent erosion of informed consent; the need for better-quality research into black health issues; the overemphasis upon genetic research in nongenetic issues; and the government’s distortion of research with black Americans to further political and ideological ends. “It is the most fundamental tenet of medical ethics and human decency that the subjects volunteer for the experiment after being informed of its nature and hazards. This is the clear dividing line between criminal and what may be noncriminal. If the experimental subjects cannot be said to have volunteered, then the inquiry need proceed no further.” So testified Andrew Ivy, M.D., chief witness for the prosecution in the Nuremberg doctors’ trial. The Nuremberg Code was instituted in August 1947, by Americans judging twenty-three physicians and scientists, to ensure that the horrors of abusive medical experimentation never again be visited upon the world. Its very first line is unambiguous: “The consent of the subject is absolutely essential.” But American research culture increasingly disagrees. In October 1996,13 the Department of Health and Human Services passed 21CFR50.24, a regulation that robbed seriously ill emergency room patients of the right to informed consent. This allows researchers to legally enroll such patients in medical-research studies and test experimental therapies on them without their consent.14 The emergency room deaths began the very next year. On April 1, 1997, when the Occupational Health and Hygiene Plan (OHHP) suspended a U.S. clinical trial that had enrolled unwitting patients in a clinical trial of diaspirin cross-linked hemoglobin (DCLHb) for treating shock. So many more people who received the experimental treatment died than those receiving standard care that the trial had to be stopped early. These people had never given their consent to participate in the study that killed them. Yet today the practice of experimenting with nonconsenting emergency room patients continues. For example, when they need a blood transfusion, unconscious patients brought into some emergency rooms are as likely to be given an artificial substitute as blood—without their knowledge. Also, the AbioCor company proposes to implant their complication-ridden model of a self-contained artificial heart into a wide variety of heart-attack patients who are brought into emergency rooms if they meet certain (rather wide) research criteria—again without their permission or knowledge. And informed consent is also being attacked more insidiously—in assaults upon existing laws.15 Various ethicists who are experts in human medical experimentation, such as Jay Katz, M.D., and George Annas, J.D., worry that the vague language of federal regulations governing human medical experimentation is being interpreted in a manner that minimizes protections. At the same time, they point out addenda to these regulations that further curtail patient protection and patient autonomy while expanding the types and number of people who can become subjects. The erosion of consent is often presented as a partial surrender or a compromise between the needs of researchers for subjects and a small loss to a patient autonomy. Or it is presented behind the mask of futility—in such scenarios, it is argued, the patient is unconscious and cannot agree or disagree to partaking of a possibly lifesaving experimental treatment, so his doctors should decide for him. In such cases, “research” is conflated with “treatment” to justify removing informed consent from the equation. But these scenarios are false and misleading. It is not necessary to waive informed consent in order to provide the unconscious with treatment: Laws already exist that permit doctors to offer the best-available treatment to patients who are comatose, unconscious, underage, or in other ways unable to consent to treatment. But these laws do not extend to experimentation, and rightly so. Treatment focuses upon the patient’s needs; experimentation focuses upon the researchers’ needs, no matter how much those researchers may invoke possible or future benefits for patients. In fact, these studies are typically randomized, which means that the computer, not the doctor, determines what experimental therapy will be administered. This may not be the best treatment for the patient, nor the therapy the patient would choose. Once one loses the right to be told what one is about to undergo, to agree or to refuse participation, research policy gains momentum on a very slippery slope. This book documents the depths to which researchers have stooped to bypass the consent of the subject. In fact, African Americans first became favored subjects because during the antebellum period they did not enjoy legal protections and researchers did not need their consent. This vulnerability also persists today in other settings where blacks are overrepresented, such as military ground troops. In 1990, the Department of Defense (DOD) sought and obtained from the Food and Drug Administration a waiver of the informed-consent requirements for human medical experimentation. Under Rule 21 CFR 50.23(d), soldiers suddenly lost the protection of the informed-consent provisions that give other Americans the right to say no to experimental medications. The DOD forced them to accept experimental drugs, including pyridostigmine bromide, a putative prophylactic against nerve gas atta
ck; and the pentavalent botulinum toxoid vaccine for botulism. In 1998, with FDA permission, the DOD Anthrax Vaccination Immunization Program (AVIP) also began immunizing 2.4 million soldiers against the potential threat of airborne anthrax: At least 900,000 troops have been immunized to date. But, citing devastating side effects and deaths that have been validated by amendments to the medication warning labels, hundreds of soldiers have refused to comply, at least one hundred of whom have been court martialed, and many have been forced to leave the military. One of these was Jemekia Barber, who while stationed in Colorado was ordered to accept an anthrax vaccination in preparation for a transfer to Korea. She disobeyed that order on the grounds that the vaccination may not be safe for females of childbearing age. Black soldiers such as Barber are twice as common in ground troops as in American society, and so are especially vulnerable to measures such as forced vaccinations.16 In late 2003, Judge Emmet G. Sullivan of the United States District Court in Washington, D.C., noted that the Supreme Court had ruled that U.S. combat troops could no longer be compelled to take the experimental anthrax vaccinations. The FDA responded by rapidly elevating the anthrax vaccine from a questionable investigational drug to an approved therapeutic, allowing the DOD to sidestep the intent of the law and restoring the soldiers to a state of investigative servitude—“investigative” because the data collection and evaluation of the anthrax vaccine risks, including death, will continue among soldiers. Fortunately, in 2004, Judge Sullivan ordered the DOD to stop forcing anthrax vaccines on U.S. military personnel. Barber ’s lawsuit against the army continues. Today, African American are at greater risks than whites of being conscripted into such research without giving their consent, because blacks are more likely than whites to receive their health care from emergency rooms. However, this coin of research vulnerability has an obverse: We also need more and better research into black health care. Such high-quality research has begun to emerge but, as chapter 14 points out, it has also taken some wrong turns. For example, research into black ailments and medications, such as that conducted in support of the black heart-failure drug BiDil, is sometimes sloppy and illogical, and in other cases it is based on the thinnest of premises. The long history of flawed science in the service of preconceived notions is being supplemented by new, insufficiently questioned racial theories of disease. Adopting these unquestioningly while ignoring important environmental disease factors not only imperils black health; it also reinforces the idea of blacks as possessing dramatic physiologic differences. The inclusion of blacks in quality American medical research is also important for everyone. Why? Many arguments cite the dollar savings or the reduction in disease exposure to the larger society that will emanate from better health among African Americans. However, I am often uncomfortable with arguments that focus solely on utility, especially when it comes to medicine and health. Such benefits can be elusive or hard to quantify. I believe that caring for people and maximizing their chances at health and happiness are goals that we should pursue for their own sake, because they are the right thing to do. They elevate us spiritually and socially, and reaffirm our cohesion and our humanity. But that said, there’s no denying that increasing the ethical, reasonably safe research available to African Americans will benefit everyone else. This book has repeatedly demonstrated how the poor health profile spawned by experimental abuse has not only harmed blacks but has spilled over to harm their white compatriots. Pathogens, for instance, are notoriously democratic. Had African Americans not been excluded from early AZT therapy on the basis of flawed HIVtreatment clinical trials (that largely excluded them), would the number of HIVinfected African Americans be lower today? Would the number of all domestic AIDS cases be lower, considering that black Americans today constitute half of all the HIV-infected? It’s too late to know now, but not too late to do better racial recruitment for the next HIV clinical trials. The fallout extends beyond infectious disease. For example, Donna Christian-Christensen, M.D., who represents the U.S. Virgin Islands in Congress, has observed that the percentage of black Americans who are insured is lower than that of white Americans, and the cost of caring for these uninsured people raises the rates and health-care costs of all Americans. She said, “We’re getting to the hospital late, using much more expensive care: We’re really driving up the costs of health care.” In fact, a decade ago, research by Harvard School of Public Health professors Ichiro Kawachi, M.D., and Deborah Prothow-Stith, M.D., explained this public-health phenomenon in detail and even quantified it, emerging with what was popularly referred to as the “Robin Hood Index.” The shorthand is that public health suffers more in the nations with the greatest inequities in wealth, and that the middle class suffers nearly as much as the poor from inequities. In the United States, which has, for example, one of the world’s greatest disparities in income between the haves and have-nots, we have not only the greatest health disparities but the greatest health-cost burdens for the mostly white middle class. In short, whites should care about quality medical research for African Americans because its dearth has generated needless pain, suffering, anger, and costs that continue to permeate the fabric of our entire nation: It is not only a racial tragedy but also an American tragedy. For their part, African Americans cannot afford passivity. Seneca said, “It is part of the cure to wish to be cured.” When it comes to medical research, that wish must be awakened in African Americans. African Americans should not shun lifesaving research; indeed, they cannot afford to do so. Instead, they must carefully scrutinize research initiatives before becoming subjects. But we must do more: We must also address the dearth of therapeutic research in areas that affect the health of African American most dramatically. What changes are necessary to achieve this? REPAIR THE SYSTEM OF INSTITUTIONAL REVIEW BOARDS (IRBS) IRBs judge the scientific and ethical acceptability of proposed studies on human subjects. However, a string of abusive experiments have revealed that the nation’s five thousand IRBs have failed to perform their role of protecting the public, and African Americans in particular. In June 1998, a Department of Health and Human Services (HHS) report concluded that IRB staff are inadequately trained, subject to conflicts of interest, and overwhelmed by too many cases.17 The Office of Protection from Research Risks (OPRR) requires IRBs to have a minimum of five members, at least one of whom must have primarily scientific interests, another of whom must have primarily nonscientific interests, and another of whom must be otherwise unaffiliated with the IRB’s institution. But most IRB members are scientists affiliated with the organization in question, and even the lay members tend to have loyalties to the home institution. I propose that each IRB be composed of equal numbers of scientists and of peers of the group who will be asked to participate as subjects. Some may object that laypeople will be unable to understand enough about scientific experiments to judge their suitability and value, but as a medical communicator, I doubt this: I know many skilled and motivated scientists who routinely convey complex information to many people, although to do so may require some preparation and effort. Moreover, if a project cannot be explained to laypersons in an IRB meeting, how does a researcher propose to explain it to the potential subjects, as he [they] must do by law? I also propose that each IRB include a medical ethicist and, if possible, a medical historian. STOP THE EROSION OF CONSENT Ban exceptions to informed consent. Recognize the right of every patient to say yes or no as an absolute value and cease designating groups such as soldiers, unconscious emergency room patients, and Third World experimental subjects as appropriate subjects without their input. When physicians are faced with a patient who is unable to consent because of his or her medical condition, and whose condition requires treatment before a family member or other proxy can be consulted, I propose that the patient be treated as if the physician had no research protocol to worry about. Treat him or her, but don’t enroll that patient in a study. Instead, use the best-known treatment for that particular individual. INSTITUTE A COORDINATED SYSTEM OF MANDATORY SUBJECT EDUCATION The NIH and the Office of Research Integrity require that every practicing medical researcher receive education in the ethical and practical conduct of biomedical research. I took such a course at Harvard Medical School in 2004 and found it factually invaluable and culturally revealing. I propose that prospective research subjects be given the same advantage. Every institution that receives government funds to perform research should be required to hold approximately three classes that equip subjects with information about how research is conducted, what risks and benefits are inherent in different types of research, what their legal rights and moral responsibilities are, what sort of questions they should ask, and how they can maximize their chances of getting the desired result from the clinical trial they enter. Except for seriously ill or otherwise-incapacitated patients, only people who have completed this course should be eligible to participate in governmentfunded clinical trials, and only they should be permitted to serve on IRBs. EMBRACE A SINGLE STANDARD OF RESEARCH ETHICS We cannot retain moral credibility if we champion human rights in medical research at home and ignore them abroad. Researchers should be made to follow informed-consent strictures abroad that are as restrictive as those governing their research on American shores. Pharmaceutical companies should be forced to make lifesaving drugs available to people in poor countries, even when this means sacrificing their obese profits for the benefit of human welfare. Because the federal government sponsors much of the research that enables pharmaceutical companies to develop vital medications, the federal government should take advantage of its legal right either to force manufacturers to lower their prices or to suspend patent enforcement in poor countries. However, more important than any of the above recommendations is the need for African Americans to set their own research agendas. Black patients must take ownership of medical-research issues, as they have done with so many other complex health issues, from AIDS to environmental racism. Already, expert medical organizations have taken leadership roles. The National Center for Bioethics in Research and Health Care at Tuskegee University provides not only a center for scholars but also a venue for muchneeded lay education on medical research. The National Medical Association has also spearheaded patient education through its Project IMPACT, which has helped black Americans to navigate clinical trials safely by providing brochures, Web sites, and access to experts. African American and other health organizations must continue and expand the work of these pivotal groups, and much of this can be done close to home, through church health fairs, social organizations, and community activism. I challenge African Americans to bring medical-research education to the fore of the American health agenda. I challenge you, the reader, to familiarize yourself with the informational documents on this book’s Web site and elsewhere, to join an IRB, to ask the hard questions of physicians who are recruiting in your community, and to join appropriate clinical trials once you have satisfied yourself that they are worthwhile and relatively safe. I challenge African Americans to effect a transformation of our attitudes toward medical research and to demand our place at the table to enjoy the rich bounty of the American medical system in the form of longer, healthier lives.
Expanding the medical workforce to be more representative of the communities it serves enables better care and policy design through shared experience
The impact of the aff is beyond the individual – high levels of uninsurance undermine minority community cohesion and strength
McKay and Timmermans 17 (Tara McKay, Assistant Professor of Medicine, Health, and Society and affiliated faculty in the Sociology Department at Vanderbilt University, PhD in Sociology from the University of California, Los Angeles, Robert Wood Johnson Foundation Scholar in Health Policy Research at the University of California, Berkeley, Dr. Stefan Timmermans, Professor of the UCLA Department of Sociology as well as being a professor at ISG, Journal of Health and Social Behavior, 2017. “Beyond Health Effects? Examining the Social Consequences of Community Levels of Uninsurance Pre-ACA.” https://journals.sagepub.com/doi/pdf/10.1177/0022146516684537)
Spillover Effects of Uninsurance on Healthcare Access and Quality While the lack of health insurance is traditionally considered a problem facing individuals and their families, the geographically bounded organization and funding of healthcare make it possible for the uninsured to have a broader impact, affecting everyone living in a community or health market. At the most elementary level, the spillover effect is a matter of economics: the costs of care to the uninsured in emergency and urgent care settings are mostly uncompensated and must be absorbed with public and/or private redistributions of funds. Among hospitals in California, where we focus our analysis, the cost of providing care to the uninsured prior to ACA accounted for 3% to 7% of total operating costs annually, with county hospitals and community clinics incurring the largest revenue losses (California Healthcare Foundation 2010). In order to reduce the costs of uncompensated care provided to the uninsured, healthcare providers may try to lower their exposure to an uninsured population by reducing, dropping, or redistributing staff and services disproportionally used by the uninsured, such as emergency care or substance abuse care (Brown and Stevens 2006; Cunningham, Bazzoli, and Katz 2008). Providers might also attempt to generate or expand services targeted to the insured, shift costs to the insured by increasing fees, or attempt to otherwise alter the insurance status composition of their patient pool in order to gain access to state and federal funds. These provider strategies affect access to healthcare, quality of care, and trust in healthcare providers for all members of a community, not just the uninsured (Gresenz and Escarce 2011; Pagán, Balasubramanian, and Pauly 2007; Pagán and Pauly 2006; Pauly and Pagán 2007). Additionally, provider strategies to reduce exposure to the uninsured may have real consequences for the individual health outcomes of the insured. While research by McMorrow (2013) has found inconsistent effects of uninsurance rate on the insured across some health outcomes, Daysal (2012) finds that California hospitals servicing a higher proportion of uninsured patients have 3% to 5% higher mortality following myocardial infarction among insured patients compared with hospitals servicing fewer uninsured patients, controlling for individual health status and past diagnoses. Similarly, Escarce, Edgington, and Gresenz (2014) find that a higher uninsurance rate has an adverse effect on the probability that insured adults with hypertension receive antihypertensive treatment and achieve blood pressure control. Beyond Health Effects? Given the strain that uninsurance places on individuals, providers, and healthcare markets, the consequences of uninsurance are likely to go beyond health and healthcare and impact the social lives of individuals and communities. In a 2003 report on community levels of uninsurance, the Institute of Medicine (IOM) acknowledged that in addition to thinking about the economic effects of uninsurance, researchers also needed to consider how uninsurance might “strain social relationships among community members and local institutions” (IOM 2003:133). Research on the social spillover effects of uninsurance remains in its infancy and has yet to present a clear or consistent theoretical framework. Our first aim in this paper is thus to bring together research in this area, distill the key pathways of influence, and link them to the sociological literature. Researchers examining links between uninsurance and community social life tend to highlight one of two pathways of influence: (1) higher burdens of uncompensated care generate competing interests and goals within a community, which contributes to the breakdown of social cohesiveness, trust, and reciprocity among community members; and (2) higher costs to the uninsured and their families contribute to increased social and economic inequality, which promotes class differentiation, social distance, and community disengagement (see Figure 1). We develop these two theories in more detail below. Competing interests and institutions. Much of the existing literature examining social spillovers of uninsurance focuses on the emergence of competing interests and institutions in communities experiencing high or very high levels of uninsurance. Since communities vary in the number of uninsured and have different resources at their disposal (Cunningham 2007), communities may adopt different strategies of resource allocation in order to absorb the costs of providing healthcare to the uninsured. While some communities may attempt to raise new funds to cover the uninsured (e.g., through taxation), other communities may attempt to redistribute existing funds or services. Yet, as Brown and Stevens (2006) observe, “improving coverage and care for the uninsured is inescapably an exercise in redistribution from the haves to the have-nots” (p. 151), and the interests of the uninsured are often pitted against those of other groups in political battles over budgets. Additionally, attempts to cover the uninsured through redistribution of new or existing funds may run into political barriers or be forced to compete with other public services, such as education and law enforcement (Brown and Stevens 2006). Such contentious trade-offs between healthcare and other public services may undermine residents’ feelings of connection to a community, mutual trust, and collective efficacy (Browning et al. 2008), or perceptions that community members can and will intervene to effectively address common local social and economic problems (Sampson, Raudebusch, and Earls 1997). As Brown and Stevens (2006) demonstrate through their case studies of programs intended to expand coverage to the uninsured in Birmingham, Alabama, and Alameda County (Oakland), California, debates around the provision of care for the uninsured may become even more contentious when they intersect with racial and class divides that have historically limited access to insurance and healthcare institutions among African Americans and Latinos. In communities where local government and the private sector have failed to adequately cover the uninsured, local institutions, such as churches and schools, may develop their own programs to address the needs of the uninsured with varying success (Timmermans, Orrico, and Smith 2014). Thus, while healthcare access may become a rallying point for social mobilization in some communities (Steinberg and Baxter 1998), the literature above suggests that high community levels of uninsurance may also decrease effectiveness and support of local government, decrease residents’ feelings of cohesiveness and collective efficacy, and generate perceptions that local institutions are not serving the needs of residents. Social and economic inequality. A second pathway through which uninsurance has been found to affect social life is via the exacerbation of social and economic inequality. Research by Kaplan and colleagues (1996) suggests that levels of uninsurance may contribute to stratification and income inequality within a community. Most directly, uninsured individuals and families pay higher out-of-pocket expenses for healthcare, aggravating existing inequalities in income and wealth among community residents (IOM 2003; Seifert and Rukavina 2006). At the neighborhood level, higher levels of income inequality are associated with lower levels of civic engagement and trust among residents (Kawachi et al. 1997). As stratification scholars have demonstrated (Schwartz and Mare 2005), status
distinctions become starker and more socially meaningful as inequality increases, making it more difficult for individuals to form and maintain social relationships across status groups. Additionally, due to strong links between private health insurance and full-time, nonmenial employment and between public programs for the uninsured and lower-quality care, health insurance constitutes both a marker of social status as well as a nonmaterial asset that stratifies residents within communities on the basis of their access to healthcare. Kim, Haney, and Hutchinson (2012) examine the effects of exclusion from healthcare among Korean Americans, one of the most highly uninsured population groups among Asian Americans. In their qualitative investigation, the authors find not only that exclusion from healthcare has effects on individual health behaviors and healthcare seeking but also that uninsured individuals experience a sense of devaluation relative to other U.S. citizens. In twin top-down and bottom-up processes, exclusion and disenfranchisement by the state and healthcare institutions foster avoidance and feelings of disconnection, discouragement, and resentment at the bottom. Becker (2004, 2007) and Horton (2004) take this premise further in their multiple analyses of healthcare exclusion of uninsured ethnic minorities and immigrant groups in the United States. Becker’s work in particular repeatedly suggests that individuals and groups that are excluded from the U.S. healthcare system because they are uninsured or underinsured with high-deductible, catastrophic plans frequently experience poorer-quality care, discrimination, and depersonalization when they do seek care, which respondents view as an assault on their personal dignity. Other recent research on how being uninsured negatively affects patient–provider interactions and potential future interactions supports these findings (Allen et al. 2014). Implied in each of these works is the IOM’s (2003) notion that access to healthcare and health insurance are part of an implicit social contract between employers and workers and between the state and citizens. The lack of uninsurance “represents a breach of that social contract” and, when “experienced by large numbers of individuals in a community, may erode the social bonds that define and nurture functioning, healthy communities, as uninsured persons are made aware of their lesser claim on services and resources that are generally valued as essential to a dignified and secure life” (IOM 2003:133). Phrased another way by Faden and Powers (1999): In addition to the stress, powerlessness and social disrespect that have been shown to be associated with poorer health status, [uninsured individuals’] awareness of their disadvantaged social status has the potential to undermine selfrespect and their sense of themselves as the moral equals of the more fortunate members of society. (P. 3) At the same time, the converse can also be observed: where local municipalities and state governments have made a concerted effort toward including marginal populations into the healthcare system, various kinds of respondents—marginalized populations, service providers, and city officials—describe these reforms as important not just for providing access to care but are motivated by broader concerns around fostering connectedness, collaboration, and feelings of a shared fate (Marrow 2012; Marrow and Joseph 2015). Moreover, in some healthcare settings, the provision of supportive, consistent, and nonjudgmental care has been shown to promote feelings of belonging, dignity, and self-efficacy among marginalized patients (Timmermans and McKay 2009). Thus, like inequalities in wealth and income, inequality in access to health insurance and healthcare may contribute to national and local processes of identity formation, class differentiation, and social distance; at the same time, efforts to reform healthcare toward universal access and quality may improve feelings of belonging and connectedness among previously excluded groups.
The aff solves – universal healthcare produces a spillover effect that is crucial to the survival and power accumulation of minority communities
McKay and Timmermans 17 (Tara McKay, Assistant Professor of Medicine, Health, and Society and affiliated faculty in the Sociology Department at Vanderbilt University, PhD in Sociology from the University of California, Los Angeles, Robert Wood Johnson Foundation Scholar in Health Policy Research at the University of California, Berkeley, Dr. Stefan Timmermans, Professor of the UCLA Department of Sociology as well as being a professor at ISG, Journal of Health and Social Behavior, 2017. “Beyond Health Effects? Examining the Social Consequences of Community Levels of Uninsurance Pre-ACA.” https://journals.sagepub.com/doi/pdf/10.1177/0022146516684537)
While spillover effects of uninsurance on communities constitute a crucial social and political issue, the IOM noted in 2009 that this field of inquiry remains in its infancy (p. 91ff). Existing research has focused primarily on effects of spillovers from the uninsured to the insured in the areas of healthcare access and quality. We extend research on the spillover effects of uninsurance into the purview of sociologists by examining other aspects of social life that may be affected by high levels of uninsurance prior to and after ACA implementation. We focus specifically on a dimension of social capital: social cohesion, operationalized as perceptions of trust, sharing, support, and obligation among community residents. Overall, we observe a consistent, negative association between community levels of uninsurance and social cohesion using panel data from Los Angeles: lacking health insurance is bad not only for one’s health but also for community life. We show that residents of communities with higher levels of uninsurance report significantly less social cohesion net of other individual factors, like income, health, and perceived safety, and neighborhood factors, like demographic composition, poverty concentration, and residential stability. This effect is consistent across multiple analyses and extends previous qualitative and cross-sectional studies documenting the existence of negative social spillovers of uninsurance for communities by leveraging new, longitudinal data specifically designed to examine social and neighborhood contextual effects. These data allow us to better account for potentially confounding factors at the individual and community level, such as the age, racial-ethnic, nativity, and income composition of communities. Importantly, we observe a substantial effect of uninsurance on social cohesion using the LAFANS data: more than a standard deviation decrease in residents’ perceptions of the trustworthiness, reliability, and obligation to neighbors when we compare a neighborhood at the lowest level of uninsurance with a neighborhood at the highest level of uninsurance. However, these data are representative only of Los Angeles County, a metropolitan area with a large unauthorized immigrant population that is excluded from most insurance benefits and that therefore relies heavily on local safety-net providers. Additionally, the results suggest that the insured have much to gain from the expansion of insurance benefits under the ACA. Given previous research on the economic spillovers of uninsurance, we expect the expansion of public coverage through state Medicaid programs and private insurance through state and federal exchanges to increase healthcare access for both the uninsured and the insured currently living in communities with very high levels of uninsurance. However, discussion of the potential social benefits of ACA for individuals and communities has been noticeably absent from debates around ACA implementation. We demonstrate here that the expansion of health insurance benefits under the ACA has the potential to reverberate beyond healthcare access and improve community functioning by promoting social cohesion among residents regardless of insurance status. As a counterfactual, we also estimate the effects of an ACA-type intervention on perceptions of social cohesion and show that changes in the insurance composition of LAFANS sample tracts after Wave 1 would have significantly increased individuals’ perceptions of social cohesion in their neighborhoods at Wave 2 data collection, five years later. These findings speak not only to contemporary policy debates but also to the need for ongoing engagement by sociologists with the social consequences of uninsurance. As elements of ACA are increasingly implemented and scaled up over the next few years, scholars may perceive additional research on the uninsured as no longer relevant to the larger policy concerns of the country. Yet, we argue that the social consequences of uninsurance will remain important for two reasons. First, like the period following the implementation of Social Security and Medicare, ACA is likely to remain contested for several years to come. While pundits contend that it is unlikely ACA legislation will be entirely repealed, elements of the act have been stalled, blocked, left unimplemented, or revised through state and federal processes. Each of these policy developments may have the potential to counter or reinforce the spillover effects of expanding insurance. Thus, there remains a need to consider the effects of the ACA’s insurance expansion, the variability of those effects across states and communities, and the various pathways by which those effects manifest themselves. Second, a substantial minority of Americans will remain uninsured following implementation of ACA. Due to the Supreme Court’s decision to allow states to opt out of Medicaid expansion, an estimated 30 million Americans will remain uninsured in 2016 (Nardin et al. 2013). Contrary to popular perception, only 20% of these uninsured will be ineligible due to unauthorized legal status. Post-ACA, uninsured individuals are more likely to live in states and communities that historically lack good access to care, have poorer health outcomes, and have substantial racial and economic inequality. At the community and state levels, many of the uninsured post-ACA reside in low-income minority communities, concentrating any spillover effects in communities that have fewer resources and less political will to compensate for the uninsured. To this end, any social or economic spillover effects will be disproportionately felt by the already disadvantaged. Finally, this research contributes more broadly to an expanded view of health as pertaining solely to healthcare services or public health interventions. As private foundations, such as the Robert Wood Johnson Foundation, gear up to promote a “culture of health” in order to foster health as a priority across various social institutions (Lavizzo-Mourey 2014), our examination of the social spillover effects of healthcare legislation demonstrates that leveling access to healthcare also pays social dividends.
The aff isn’t an end-point – single payer opens up revolutionary avenues to health justice and spurs future radical reforms
Faust 17 (Timothy, Chapo Trap House healthcare correspondent pursuing an MPA in health policy and finance at NYU’s Wagner Graduate School of Public Service, contributor to the Jacobin and Indypendent, “Still Unsure About Single-Payer Healthcare? This Might Change Your Mind,” August 1st, 2017, https://indypendent.org/2017/08/still-unsure-about-single-payer-heath-care-this-might-change-your-mind/)
I recently had the privilege of doing some interviews and speaking at a north New Jersey Democratic Socialist of America meeting (it kicked ass) about universal single-payer health care. One question that came up several times is, “Well, how do I persuade people who are on the fence?” It’s symptomatic of my bubble that this isn’t something I had a ready answer for! So I thought about it and I think I have something I can commit to. In short, it’s that we’re already spending the money, but profit-seeking corporations aren’t giving us our fair value for it. To break it down further: 1) The same care costs much more in the United States than anywhere else. I really like this Organisation for Economic Cooperation and Development (OECD) working paper on relative hospital costs, which shows that U.S. hospital costs, adjusted for GDP, are 42 percent greater than the average of the sample — or, basically, 40 percent more expensive than France. Sarah Kliff at Vox has been on this beat for a while and has a great viz of comparative MRI costs. MRIs are a great example — the procedure consists of “push button” (I’m exaggerating). There is no reason it should cost five times what it costs in Australia! 2) We’re already spending massive amounts of money on healthcare, but we’re spending it [irresponsibly]. American public money pays for 64 percent of all healthcare costs in America. That’s fucking bonkers! Total health spending in 2015 was $3.2 trillion, of which public money represented $2.1 trillion. A little less than half of that is actual Medicare, Medicaid, or Veterans Affairs spending. The rest is government spending on private insurance for government employees, about $190 billion, and government subsidies to insurance companies and individuals via tax subsidies for employer coverage, about $300 billion. We know that Medicare can negotiate much better prices for treatment because it is a larger payer. Scale that idea up —imagine how much better things would be if we had a single payer to regulate costs more effectively across all healthcare spending! 3) Only a federal single payer bears the costs of providing care and the costs of not providing care. Align our incentives appropriately! Right now, your private insurer only bears the costs of you receiving care. Because you are likely to change insurers in the future and eventually go on Medicare, they don’t actually feel the pressure to provide you care that keeps you healthy in the distant (and near) future. Instead, we all do — we all suffer when our friends and family get sick; our public money is allocated to care for people when they get sick. So it makes perfect sense that the same actor who suffers when people don’t get preventative care — all of us, united, represented by our federal government — should be the actor who also pays for that care in the first place. Because: 4) Once you have universal, single-payer health care, you can begin the work of actual health justice. The actual goal of health reform isn’t just payer reform, universal expansion and cost coverage — those are just the beginning. The actual work is the social determinants of health. I’ve said this before and I believe every word of it: Because the federal actor bears costs of providing care and not providing care, it can finally be a tool for realizing health justice. If your population is getting sick and dying because they don’t have a place to live, then housing is healthcare, and you build housing to bring healthcare costs down. If your population doesn’t have access to healthy food to eat, then food is healthcare, and you provide them with affordable food options to bring food costs down. If you want to read more about social determinants of health care, it’s hard to go wrong reading about New York Medicaid director Jason Helgerson. Here’s the 2014 document summarizing his Medicaid Redesign Team’s approach to social determinants in New York. It’s interesting! Here’s some more good stuff on Helgerson and value-based payments. Does that make sense? I think that makes sense. Some other questions that come up Someone needs to do the extremely sexy work of standardizing medical data feeds and outputs. What about the jobs of people who currently work in the insurance industry? The easy, callous answer is “Well, at least they’ll have healthcare if they lose their jobs.” I’m not satisfied with that (even though it’s true). I also think it’s shortsighted. Much of the infrastructure in the insurance industry is still necessary. So why not reallocate these workers to the federal sector, where their labor goes to the good of all, instead of private profit? Someone needs to do the extremely sexy work of standardizing medical data feeds and outputs. Here is a great way for people with hyper-specialized skills to be paid fair wages to design and implement that standardization. And, hell, we’re trying to fix a three-trillion-dollar sector here. It’s peanuts to build a work program to help those who might otherwise be left behind. Solidarity for all workers, including those whose skills are an invention of the payer-provider labyrinth. What about doctor salaries? I believe that the reduction in per-service costs (and the adoption of smarter standards of payment, like “pay for treatment” instead of “pay for specific service”) will be more than matched by an increase in people seeking affordable preventative care, so most physicians will find their compensation to be fair. But that might not be a perfect argument. Ultimately, some physicians will find their total compensation reduced— mostly specialists, who have been unfairly privileged in price increases over time. (Primary care physicians and rural medicine doctors, on the other hand, are due for a compensation increase relative to median American physician salaries — which are, it should be noted much, much, much higher than salaries in other countries…) One of the reasons physicians need high salaries is because they graduate ten years of education with $300,000 in student debt and 7 percent of compounding interest. That’s two decades of paying off debt. How cruel! So I think there is room in universal single-payer healthcare for tuition relief and/or free medical training for doctors, nurses and other essential health providers. Relieve their pressure to be locked into a career path and insurmountable education debt in exchange for fairer salaries. This should be a net better result for everyone. What about hospital revenues? Won’t they fall year over year? That’s the wrong way to think about it. Consider “Roemer’s Law” — if a hospital builds a new bed, it will be filled. So much of hospital annual revenues are ER and inpatient admissions that don’t necessarily need to happen. Those admissions could have been prevented with preventive care or screening, or affordable care in clinics closer to home. Those procedures often could have been handled by a less specialized physician at home or in a local clinic. It’s not about cutting spending, it’s about reallocating spending to better places and making sure it ends up in the hands of people providing care.