Carolyn M. Rouse

(From Pages 3 - 6)

In the case of Eva’s kidneys the problem did not go away, and the lack of follow-up did not help. She continued:

“For years I never really had any trouble. I guess they don’t know why I got the kidney infection or whatever. When I was twelve and thirteen then it started going down from there. [Finally] I was like really, really pale. My siblings said I looked white. [That day] I remember parts of it, but I was in and out. I remember my mom holding me. They got me an ambulance and one of the ambulance guys I remember that they kept asking me my name, and of course I didn’t understand. When I was twelve, I went to my regular doctor and they’re like, ‘Just take some Tylenol, drink some juice.’ Because they would usually say drink and they didn’t really try to do any tests, or figure out why I was sick. So it was escalating quietly for two years, and that’s when it just blew up.”

To put Eva’s experiences into context, it helps to know that on average blacks develop end-stage kidney failure at 55.8 years of age versus 62.2 years for whites. Blacks as well as American Indians and Alaska Natives, have four times the rate of end-stage kidney failure as whites, and after three years on the waiting list only 30 percent of blacks have received a kidney transplant, compared with 49 percent of whites, for reasons that may or may not be related to human leukocyte antigen (HLA) matching. Disparities in rates of kidney failure are significant, and at the age of fourteen Eva became one more statistic. But why did it take two years to diagnose Eva’s kidney disease when other patients with the same initial symptoms may have been referred for further testing? A study of preemptive kidney transplantations showed that whites were more than twice as likely as blacks (and patients with private insurance were almost five times more likely than those on Medicare) to receive a kidney transplant before dialysis was required. So, more broadly, why do racial health disparities exist in the United States? Genes? Culture? Poverty? Racism?

The literature on health and health care disparities has grown significantly since President Bill Clinton and Surgeon General David Satcher announced an initiative to end racial and ethnic health care disparities in six disease categories by the year 2010. The literature reveals inequities in pain management, cardiovascular disease care, access to organ transplantation, dialysis, lumbar spine radiographs, and antipsychotic medication and the list continues to grow. Despite the good intentions, this spillage of ink has amounted to a Rorschach test open to myriad interpretations regarding the source of these inequalities. Rather than producing a unified social movement and set of medical practices, publicity surrounding racial health disparities has simply intensified the debate about how race does and does not influence treatment decisions, patient behavior, outcomes, and social responsibility. Racial health disparities, in other words, have become a condensed site for debating the relationship between race and social justice.

The difference in life expectancy between blacks and whites remains undisputed, but policy theorists take extreme positions when it comes to assigning blame. Some hold individuals responsible for their longevity and good health and discount the role of social structures and institutions. The scope and breadth of health care policy are determined by the ways in which analysts assign blame, and the outcomes of these debates are significant for people at risk for early death. As has been noted in theories of the states, citizens and noncitizens are vulnerable to how states choose to care for their welfare.

Policy analysts argue that finding a solution to health disparities will first require locating an origin. The report Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare lists probably causes as race and ethnic discrimination (aversive racism); material factors, including insurance, income, and the law (class); the culture of medicine (systems); patient cultural practices and identity (culture); and genetics. Most researchers studying medicine and social justice argue that health care disparities are caused by a confluence of these factors. The solution therefore has been to chip away at each contributing feature. But are we using the right tools? Current attempts to eliminate inequalities – cultural competency programs, greater emphasis on family-centered care – have the quality of a sculptor using a chain saw to replicate Michelangelo’s Pieta. They fail to pay attention to the delicate power negotiations that take place in the clinic. Some cultural competency programs, for example, substitute race for culture and end up institutionalizing a strange set of presuppositions that do nothing to change the power dynamics between medical professionals, patients, and families.

The fallback approach has been for institutions to assume particular fiscal and administrative burdens based on the needs of their patient populations, for example, Spanish-language services in communities with large numbers of immigrants from Central and South America. This piecemeal strategy to end disparities has worked in some institutions and has contributed to small gains in access to care at the local level. At the hospitals where I conducted research, the institutional supports created by the sickle cell teams, with the help of the National Institutes of Health (NIH), increased health care access for sickle cell patients.

The local approaches do not, however, tackle the larger issue of health inequalities at the national level. The four institutions I observed, for example, are four of only ten comprehensive sickle cell centers across the country. Every five years the NIH awards grants to only ten centers for the development and maintenance of a comprehensive approach to sickle cell care. Given the financial limitations to expand health care services generally, perhaps the public should consider a more radical nonpiecemeal approach to ending health care disparities, one that focuses on the roots of inequality rather than relying on the novel vision of a handful of physicians. Perhaps this approach might entail stronger public oversight and regulation, or a tax-based universal health care system similar to the one used by the military. In terms of educating the next generation of physicians, the public could also demand that medical schools and hospitals train doctors to become more sensitive to the culture of medicine, with its particular set of presumptions and prejudices about the body and health. Finally, the public could require that cities maintain an optimal ratio of health care facilities to population such that more health care facilities are housed in poor rural and urban neighborhoods.

All these initiatives might help reduce racial disparities in health and health care access, but what if the objects we use to identify unequal treatment – insurance, proximity to a hospital, even life expectancy – obscure a more subtle and important issue? Namely, why do we believe that health care is the domain in which issues of social justice and philosophical understandings about a life worth living and a good death must be enacted? Why do we rely on health care to equalize an unequal playing field or to determine what does and does not constitute health and well-being? Perhaps that is asking too much of health care.

Our romance with biomedicine is in part due to a longing that this rational discourse can in Rousseauian fashion locate and unmake our suffering. A moralist and a sentimentalist, Jean-Jacques Rousseau believed that in an enlightened society spectators determine the causes of suffering and deploy means for ameliorating it. Many health care professionals recognize that medicine is far too resource poor to unmake all the social injustice that contributes to racial health care disparities, yet for many it is hard not to believe in the promise of biomedicine. Unstated is a belief that randomized study trials (medical, psychosocial) that generate statistically significant P values will lead us to a solution to inequalities; it is more likely that the data would simply add to the collection of ink blots that people read differently. The uncertainties surrounding how to conduct and apply the science given the complicating factors of cost, treatment side effects, resource distribution, and social value always makes the application of scientific knowledge contingent.