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Reframing the Racial Disparities Issue for State Governments

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Deborah Stone

Excerpted from:  Deborah Stone, Reframing the Racial Disparities Issue for State Governments , 31 Journal of Health Politics, Policy and Law 127- 149, 131 - 139 (February, 2006) (11 Footnotes)

In thinking about how to frame the disparities issue for state action, the first question is how to simplify it. Issue framing entails moral visions and causal stories, but perhaps even more fundamentally, framing serves to simplify the complicated reality of a social issue to something more manageable by the human mind.

There is overwhelming evidence of racial and ethnic disparities in health status, access to insurance, and medical care itself. These are three different, though related, problems. One preliminary issue is whether policy makers want to address all three of them, and if not, which one to address first. At a very practical level, it makes sense to narrow the problem because smaller, well-defined problems are easier to solve than bigger, ill-defined ones. But practicality is not the only reason for narrowing the problem. Health status and health insurance have certain characteristics that limit their power to generate political will.

Health status is professional jargon for what laypeople simply call good or bad health. Ultimately, good health is the goal we care about, whether as citizens, health professionals, or policy makers, and likewise, eliminating racial and ethnic disparities in health is the end goal for public policy. Disparities in access to insurance and in medical care are troubling mainly because we believe insurance and care are means to better health. Yet for reasons I will argue below, eliminating disparities in health status is not the most effective way to frame the problem, even though it is the end goal.

Professionals measure health status by indicators of longevity and morbidity and, as doctors and researchers never tire of pointing out, the correlates and causes of even these more precise measures are enormously complex. If it is hard for researchers to sort out the complex determinants of health status, it is even harder for laypeople to grasp the causal mechanisms underlying their own health. Complexity does not bode well for political issue framing. Problems for which there is no understandable causal story are hard to sell; people feel helpless without a causal story to guide them (Fairclough and O'Connell 2003).

For about two decades, the public health establishment has emphasized lifestyle factors as important determinants of health. Many policy makers believe that the best way to address disparities in health status is to educate people about lifestyle risk factors and other preventive health measures. The lifestyle theory does indeed offer a relatively simple causal story--individual behavioral choices determine health status--and it is one that accords with the current conservative emphasis on personal responsibility for well-being (as in the name of the legislation that ended the entitlement to welfare assistance, the Personal Responsibility and Work Opportunity Reform Act). But lifestyle factors are only one determinant of health. Infectious disease, accidents and physical injuries, genetic make-up, diseases whose causes no one understands, and differential access to preventive and curative medicine are also important determinants. Health promotion through education about healthy behavior is a good thing, but by itself, it will not eliminate or even significantly reduce racial and ethnic disparities without addressing the other determinants. Moreover, health promotion and prevention activities are relatively cheap; they can easily tempt state politicians to fund prevention as a symbolic gesture, without putting necessary resources into financing treatment for people who do get sick and for whom preventive screening identifies serious problems.

There is one more reason for state policy makers to avoid the lifestyle/health status framing if they want to strengthen their own political will. Bluntly, state and local governments have strong financial interests in promoting unhealthy lifestyles. Since the tobacco settlement in 1998, state governments have become heavily reliant on cigarette taxes and tobacco-settlement money to square their budgets and finance borrowing. This means they depend on their citizens' continued high rates of smoking for tax revenues, and they depend on the fiscal prosperity of the tobacco industry for their yearly lump-sum payments. With such fiscal dependence on an unhealthy lifestyle choice, states cannot afford to aggressively promote healthy lifestyles. At the local level, school districts increasingly depend on revenues from soft drink and fast food companies to meet their budgets, especially as states curb their aid to schools (Nestle 2002; U.S. General Accounting Office 2002). Exclusive contracts with soft drink and fast food companies provide significant revenue and in-kind resources--often the only resources--for sports, computers, and extracurricular activities. While many states have tried to pass legislation limiting advertising and sale of junk food in schools, school administrators fiercely defend these revenue sources and have stymied or watered down the legislation (Winter 2001). Many health advocates have pointed out the contradictions between teaching healthy nutrition in the classroom and promoting unhealthy nutrition in the hallways and on the sports fields. But in this era of economic slump and massive state budget deficits (Ku and Nimalendran 2003), states are too weak to use financial and political instruments to promote healthy lifestyles. Thus, addressing disparities with programs to change individual lifestyle choices could easily become cynical symbolic politics, because the lifestyle-choice frame gives state and local governments a fig leaf and permits them to deny their tacit participation in promoting unhealthy lifestyles.

Disparate access to health insurance presents a different set of problems as an issue frame. Since health insurance is how most people pay for medical care, racial disparities in access to health insurance are also an important contributing factor to disparities (Hargraves and Hadley 2003). For a long time, many researchers and advocates believed that if access to insurance were equalized, equal access to medical care would follow. Recent studies have demonstrated that racial disparities in treatment remain, even when insurance status is held constant and even in some cases when black and white patients are members of the same insurance or managed care plan (Gornick et al. 1996; Gaskin and Hoffman 2000; Schneider, Zaslavsky, and Epstein 2002). Clearly something else is at work. If the goal of equalizing access to insurance is equalizing access to medical care, we need to address care more directly.

Another reason health insurance is a politically difficult route to addressing racial disparities is that insurance inhabits the realm of economics. Insurance is a financial product, in industry jargon, and infused with all the cultural norms surrounding products that are made and distributed in markets (Stone 1993). Most economists cast medical care as a consumption good, something that people choose to buy after comparing their options, pondering their tastes, and juggling their budgets. In economic theory, disparities in distribution of consumption goods are not at all troubling, because disparities by definition reflect different consumer preferences and different values. Ability to pay is supposed to have some bearing on distribution. Thus in the American political economy that so highly prizes market distribution, it is much harder to get people morally outraged or politically exercised about disparities, even racial disparities, when the good in question is viewed as a consumption good.

Of the three types of racial and ethnic disparities in health, medical treatment disparities are most amenable to becoming a hot-button political issue. Access to medical treatment is the reason we want health insurance; no one wants or needs health insurance in itself, just to have an unreadable document in their drawer. People want health insurance because it is a ticket to medical care. And they want medical care because they believe it can make a difference in their health and can probably make more of a difference than anything else they might be able to do.

To be sure, economists have also recast medical care itself, not only health insurance, as a consumption good, with an entire public discourse about medical consumers and providers, consumer choice, competition among sellers for patients, comparison shopping by patients among plans, and so forth. But as I will argue below, although the market frame dominates American political culture, there is still strong philosophical support for the idea that medical treatment is essential to life and well-being, rather than an optional good or marginal enhancement to lifestyle (Daniels 1985).

Finally, the concept of disparities in medical treatment is a potentially effective political framing because it consists of palpable human interaction. When people hear of disparities in medical treatment, they get images of doctors, nurses, receptionists ("Do you have health insurance?"), and billing clerks. You can hear, see, feel, and smell medical treatment. You can conjure up an image of a place and a person whose behavior and whose decisions affect you. There's somebody there. And ultimately, any policy reform needs somebody there, somebody whose behavior and decisions policy can change. Policy needs human agency.

The notion of disparities in medical treatment accords closely with the legal concept of disparate treatment that has been so powerful in civil rights reform. In the American political landscape, it makes sense to focus on intentional human behavior. An issue frame that highlights inequalities in the way medical services are provided to minorities harnesses the power of the civil rights idea as an engine of reform in the United States. Focusing on medical care frames the disparities problem as an injustice by highlighting human relationships and the way people treat each other.

Within the realm of medical care, there are significant racial and ethnic disparities in diagnostic tests, therapies and procedures, and preventive measures (Smedley, Stith, and Nelson 2003; Geiger 2003). Plausible alternative explanations have been ruled out. Racial disparities in medical care remain even after accounting for differences in insurance, income, and education; even after accounting for clinical differences in severity of disease and complications; and even after accounting for the possibility of inappropriate overuse of some procedures by whites (Smedley, Stith, and Nelson 2003, chap. 1).

Moreover, disparities in medical care are not uniform across the fifty states. One study of ten states (Gaskin and Hoffman 2000) found significant racial and ethnic disparities in the likelihood of being hospitalized for a preventable condition, which itself is an indicator of limited access to primary care. Moreover, in this study, there were significant differences among states in their levels of disparities. Racial and ethnic disparities were greatest in large urban states with large minority populations and greater poverty (California, New York, Florida, and New Jersey) than in rural states and states with smaller minority populations (Virginia, Missouri, South Carolina, and Pennsylvania). Perhaps the most disturbing indicator of racial disparities in treatment is the index of segregation developed by David Barton Smith (2001). According to Smith's research, despite the end of de jure racial segregation in hospitals, a large proportion of blacks insured by Medicare (a uniform federal benefit plan) receive their hospital care in facilities that are de facto segregated. States in the Midwest and Northeast that have large minority populations show greater segregation than states in the South, where federal officials once mounted a concerted legal campaign to end segregation (ibid.).

Framing a Rationale for Government Action

The first finding of the Institute of Medicine's Unequal Treatment (Smedley, Stith, and Nelson 2003: 62) declares, "Racial and ethnic disparities in healthcare exist and, because they are associated with worse outcomes in many cases, are unacceptable." Political leaders, if they hope to make an issue of racial disparities in medical care, must provide a persuasive answer to the question, Why are they unacceptable? After all, we tolerate significant racial and ethnic disparities in the distribution of other valuable social resources, notably income, housing, education, and access to natural and cultural riches. We also tolerate racial and ethnic disparities in the distribution of "bads," notably imprisonment, capital punishment, and exposure to environmental toxins. These disparities are also associated with "worse outcomes" (such as standard of living and socioeconomic mobility) but that is not enough to persuade the political system that they are unacceptable. It would be hard to imagine an expert committee commissioned by Congress making an unequivocal statement that income disparities between racial groups are unacceptable. Is there then something special about health and medical care that enables the Institute of Medicine committee and others to assume that racial disparities in this realm are unacceptable? Is there a reason state policy makers should take on this issue ahead of other distributive disparities across racial and ethnic groups?

To answer these questions, we need to inquire into the broader standards of distributive justice that govern American political life, recognizing that these standards themselves are always an area of intense political dispute. There are very few social distributions in which everyone receives exactly equal portions (absolute equality). As Michael Walzer (1986) showed in Spheres of Justice, in every culture, people tend to believe that different goods require different standards of distribution, depending on the meaning of the goods in the particular culture. To argue that any distributive outcome is inequitable and morally unacceptable, one has to make a convincing case that the distribution violates the standard that best applies to a particular sphere in a particular culture. In our democratic polity, for example, we believe political power ought to be distributed absolutely equally among adult citizens (excepting felons and the mentally retarded), so we use a rule of one person, one vote. We believe professional jobs and honors ought to be distributed in proportion to achievement, and so (in theory) we use a rule of merit-based allocation. Any political contest over distributive justice, therefore, involves as a first step showing which standard, among several legitimate ones, ought to apply to the resource in question.

There are at least five major standards of distributive justice that have a claim to legitimacy in American political ideology and that in practice govern some important area of our collective life. Importantly, these standards all coexist. Although the United States has a market economy, by no means do we believe everything should be distributed according to market principles. Importantly, too, our ideal of distributive justice starts from a premise that all humans are fundamentally equal in moral worth (this is the natural rights tradition in eighteenth-century philosophy that gave us our causus belli: "All men are created equal"). This tradition allows for deviations from a standard of absolute equality, but it requires that every distribution made according to some other standard be justified with a principled rationale (Stone 2001: 39- 60). The natural rights tradition is also the basis for the principle that race, ethnicity, gender, nationality, and religion are not legitimate criteria for distribution of anything (with the possible exception of salvation in the latter case).

The principle of absolute equality comes directly out of the natural rights tradition. Absolute equality is the classic same-size slice of cake for everyone. We can see this principle in the one person, one vote rule, as well as in the apportionment of voting districts for the House of Representatives. In a sense, one might say that the guarantee of public education for every child distributes educational opportunity according to the absolute equality principle (though if one considers the amount of spending per pupil as a measure of educational value, the absolute equality principle is violated).

Despite the rhetorical commitment to equal moral worth, however, perhaps the dominant ideal of distributive justice in American political ideology is individual merit or desert. People should receive shares of goods (meaning both material goods and income, as well as intangible goods such as educational opportunity and honors) in proportion to their achievements or their deservingness. Thus, for example, college and professional school admissions, as well as jobs and promotions, are theoretically based on merit. Meritocracy is the ideal (or myth, depending on your viewpoint) of distributive justice at the heart of American political development. According to the ideal, our founders came here rejecting the principle of distribution according to hereditary bloodlines and caste to establish instead a society in which individuals could rise and fall on their talents and accomplishments. According to James Morone (2003) in Hellfire Nation, the Puritan founders in fact made moral desert the primary criterion of distributive justice, and elite evaluations of group moral worth, rather than individual merit, continue to drive public policy. Nevertheless, equal moral worth combined with differential individual achievement remains the moral standard at the heart of civil rights law, and the merit standard is the strongest basis for rejecting immutable traits (race, ethnicity, gender) as determinants of a distribution.

Heredity does have a place in American principles of distributive justice. Our tax laws enable families to pass on at least some of their acquisitions and the tax code implicitly declares that hereditary descendants are legitimately entitled to benefit from such assets that they did not earn themselves. University admissions policies that give priority to children of alumni reveal a similar sense of legitimacy about hereditary distribution.

Distribution according to willingness and ability to pay is obviously the primary principle of market economies. Consumer goods, housing, and to a large extent education and medical care are distributed according to ability to pay. Without going into an extended philosophical discussion of market ideals of justice, suffice it to say that many people interpret market distribution as a variation on merit, since earnings and assets might be understood as the fruits of labor and talent.

The last major principle of distributive justice is need. Need is the principle associated with socialism ("From each according to his ability, to each according to his need"), but it is a principle with strong legitimacy in capitalist economies as well. The gamut of social assistance programs variously dubbed safety net or welfare state are premised on need as a standard of justice. All the public sector income or means-tested programs, such as food stamps, Medicaid, income assistance, and Supplemental Security Income, use need-based distribution. Importantly, although a need standard will result in an unequal distribution of goods or services--each person will ideally receive the amount he or she needs and people's shares will therefore differ-- in many spheres of life, need, rather than absolute equality, is considered the appropriate standard of equity.

Rationales for a Need Standard of Justice in Medical Care

To make racial disparities in medical care a problem of injustice, we have to argue that medical care is one of those goods that ought to be distributed purely and only according to need, and specifically medical need. Everyone who needs an appendectomy should get one and no one who does not should. In fact, I believe this is and always has been the core argument for universal access. No one is troubled by the prospect of some people getting appendectomies and others never getting one, but we are all (I trust) troubled by the prospect of someone with an inflamed appendix not being able to have surgery.

There are three major arguments why medical care ought to be distributed according to medical need. First, medical care is often said to be a right because health is a prerequisite to everything else we value in life. Many philosophers consider good health to be what John Rawls (1971) called a "primary good," something fundamentally and universally important to human well-being and capacity (Green 1976; Daniels 1985). Just as equal starting resources are necessary for the textbook ideal of free-market competition, basic health is necessary for a fair meritocracy. Health enables people to learn, work, contribute, and achieve; people cannot earn, merit, or deserve if they cannot function in the first place. If medical care were not distributed according to medical need, all merit-based distributions would be suspect (and in fact are suspect to many of us).

Second, in our modern scientific culture, health is not understood as primarily a matter of individual choices and effort. Classically, sickness is not sin. The notion that people ought to receive medical care in accordance with their moral deservingness strikes most of us as bizarre. In fact, insurance provisions that exclude self-inflicted illnesses and injuries from coverage highlight that we believe most medical problems are not self-inflicted or somehow earned by our actions. Obviously, the lifestyle theory of disease causation that has been a prominent feature of public health since the late 1970s modifies the earlier germs-and-accidents causal story about disease and transforms at least some sickness into sin. Meanwhile, however, genetic research has significantly diminished the types of illness for which individual responsibility is a reasonable causal story. And although smoking, poor diet, lack of exercise, and other unhealthful behaviors are sometimes viewed as personal irresponsibility, policy proposals based on this idea usually call for charging irresponsible people higher prices for medical insurance or care, but rarely (if ever) for withholding medical care from them if they are sick enough to need it.

The third reason to distribute medical care according to medical need is that medicine is a science. We understand science to be a realm of expertise and objectivity, right and wrong answers, and remedies that can be proven effective or not. This means that a standard of need can be arbitrated clearly and fairly. What care people receive can and should be determined by experts. To be sure, medicine is as much art as science, and there are many clinical situations for which science has no clear-cut answers and even large, randomized controlled trials fail to answer clinical questions definitively. But modern notions of outcome measurement and evidence-based medicine are predicated on the assumption that clinical medicine can and should be practiced as a science. The kinds of diagnostic and treatment disparities that Unequal Treatment identifies and that most people find so troubling are ones in which racial and ethnic minorities receive care that does not meet a scientific consensus on standards of quality. Although medicine is still full of internal disputes about the best treatments for a given problem, our cultural concept of illness and medical care holds strongly to medical expertise as the appropriate determinant of who should get what care.

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