Race and Healthcare
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EDITOR'S NOTE: This is the second in a series of three stories by Sally Lehrman, a veteran journalist and Expert Fellow of the Institute for Justice and Journalism at the University of Southern California's Annenberg School for Communication. This story focuses on health issues related to racial and ethnic identity.
Hoping to find out why adult-onset diabetes strikes Native Americans three times as often as whites, government researchers are narrowing in on a gene prevalent in Pima Indians. Concerned about the high rate among African Americans, Howard University scientists are collecting DNA samples from West Africans with the disease.
But the push to find genetic differences and develop targeted medicines won't ease sharp disparities in health status between whites and other racial groups in the United States, insist some social scientists and health specialists. While acknowledging that biology may be an important contributor to disease susceptibility and severity, they say social factors are key to bridging the gap. Dozens of genes may be involved in diabetes, for example, but they act in concert with our ability to get exercise, find healthy food and see a sympathetic doctor for the medical care we need. They say racism -- not race -- is what makes people of color more sick.
"There is undue emphasis on genetics at the expense of societal factors," says Barbara Koenig, a Stanford University anthropologist who studies contemporary biomedicine. "If you look at the history of improvements in life expectancy in the industrialized West, the things that made the most difference in terms of overall health status were not medical interventions, but those in the social domain."
Social stratification, residential segregation and neglect all contribute to the higher rates of disease and death among U.S. ethnic and racial minorities, says Carmen Nevarez, medical director of the Public Health Institute in Oakland, Calif. The roots of obesity -- and diabetes -- are easy to see among her own young, urban clients, she points out. Without a nearby grocery store, these teenagers have few options other than a bag of Cheetos for a cheap, easy breakfast. They have no structured exercise in school, and are afraid to walk outdoors for fear of being arrested or caught in gang crossfire.
Racial Health Divide
But the most critical social factor may be the health care system itself, conclude medical and public health experts at the Institute of Medicine. In a comprehensive analysis of 100 studies on treatment and outcome differences by race, they conclude that biological differences in susceptibility and disease severity aren't enough to explain the racial health divide. Instead, their recent book-length report, "Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare," blames a pattern of lower-quality service stemming from cost-containment pressures, clinical bureaucracy, inconveniently located hospitals, and other factors, including unconscious biases held by doctors.
"Even with the same symptoms and stage of the disease, differences persist," says Brian Smedley, project director for the study, which also controls for insurance coverage and ability to pay. The committee found stark inequalities in preventive care, diagnostics and treatment no matter what the disease, and these in turn connected to higher rates of mortality. Blacks and Latinos who arrived at hospitals with the same severity of heart disease, for example, received catheterization or bypass surgery less often. African Americans with a colorectal tumor were 41 percent less likely than whites to receive major treatment such as cutting out the cancerous cells.
In one comprehensive study of 1.7 million patients, African Americans received major therapeutic procedures less often than whites in 37 of 77 conditions, according to the report. In contrast, minority patients underwent limb amputations in greater proportions and were given anti-psychotic medications more often. "Clearly, these disparities are unacceptable and they require a comprehensive response to correct them," Smedley says.
Call for Data
The report recommended structural changes in health services delivery, such as strengthening long-term relationships between doctors and patients, providing clear guidelines for care, and offering training in cultural competence. It also underlined what the authors saw as a critical need for consistent data on patient and provider race, ethnicity, and language, as well as ways these might affect the process, structure, and outcomes of care.
"The federal dataset is very limited," says Smedley. Indeed, a 2001 Commonwealth Fund report found that health agencies' efforts to collect statistics by race, ethnicity and language were sorely lacking, despite widespread agreement on their value in improving care quality and access.
The concerns about disparate medical treatment come at a time when California is debating the role of "race" in society -- as a classification system and as a way to measure and redress inequalities. Some have proposed that racial categories themselves can contribute to unequal health status. Even the Institute of Medicine committee acknowledged that skin color, racial identity and ancestry don't always match up. Focusing on race in medicine can reinforce misperceptions that it represents biological reality instead of a social ideology, the health specialists said. More dangerously, argues sociologist Yehudi Webster at California State University-Los Angeles in the American Sociological Association newsletter, race classifications can trigger the very attitudes and awareness that may underlie differential care by doctors.
Similarly, scientists' enthusiasm about pinpointing biological and cultural reasons for health disparities can bolster popular racist stereotypes and hierarchies, anthropologist Koenig says. "If we focus on individual (genetic) variation in particular populations, we almost always get into a 'blame the victim' mentality," she says. Groups more often affected by a disease can become stigmatized, Koenig explained, especially if the condition involves risk factors connected to lifestyle. Anti-gay activists, for example, have fixated on HIV's connection to sexual activity that they regard as immoral.
But that doesn't mean "race" is not a useful tool to understand health disparities, according to Koenig. Even as geneticists debate the biological relevance of race, agreement is broad that its social categories deeply influence well-being. Sometimes the cause is quite direct, as when darker skin among African Americans correlates with more experiences of prejudice -- and not coincidentally, researchers conclude, higher rates of hypertension.
A Legacy of Poor Access
The Institute of Medicine details a sharpening disparity in care beginning with the closing of black hospitals in the 1960s. Minority communities lost convenient geographic access and a sense of familiarity and safety, while African American doctors found themselves shut out. "What's surprising is this gap hasn't closed," says study leader Smedley. "We would expect this 40 years ago because of discrimination, gross disparities between economic status, and lack of insurance."
The committee speculated that the cost-containment emphasis in today's health system disproportionately affects African American and Latino patients. When doctors have limited resources, the most informed and assertive patients are likely to get preference. Cultural and linguistic barriers contribute to the skew, Smedley says. And even the most well-intended doctors sometimes act on unconscious stereotypes that may prompt them to prescribe some types of medication less often or stop short of recommending surgery.
In a book review in the New England Journal of Medicine, health outcomes researcher Peter Bach worried that the next step would be to threaten doctors with civil rights violations, rather than encouraging them to focus on improving the quality of care in underserved populations. In his own research, Bach, a Memorial Sloan Kettering Cancer Center physician, has identified differences in treatment as a core reason for survival differences between blacks and whites with cancer.
Sally Satel, a practicing psychiatrist and resident scholar at the American Enterprise Institute in Washington, D.C., says the Institute of Medicine's allegations of racism in the medical system are impossible to prove or disprove. The committee relied mainly on retrospective studies and therefore didn't have enough information to really understand differences in care, she says. More importantly, Satel asked, "Why focus on it? I think it's a huge distraction from the most important redress. The basic problems are economics and health literacy." Public health programs should be teaching people about wellness through grassroots programs in churches and community centers, she says, and medical savings accounts or more public health clinics might ease economic access.
Despite such criticism, the American Medical Association has now launched programs to teach its members about health care disparities, provide cultural training, create standards for treatment, and reach out to patients more effectively. The association also has encouraged race-based data collection in order to identify disparities and monitor progress against them. Separately, in March 2003, Aetna announced a program to measure use of its services by race, ethnicity and primary language. The insurer also said it would address the cultural competency of its physician network.
More attention to the ways that societal structures reinforce health disparities would be a welcome change, Nevarez says. It's not only Latinos, African Americans and Native Americans who would benefit, she emphasizes. Whites suffer from societal racism, too -- in their hearts, their pocketbooks and their own health status, she says. Pointing to the high rates of hospitalization among black children with asthma and untreated tuberculosis in immigrant communities, she wonders, what is it in urban air that makes it hard to breathe? Why haven't Americans made it a priority to screen for tuberculosis, which observes no social barriers? "In some ways, poor people and people of color are the canaries in the coal mine," Nevarez says.
REFERENCES: As California voters decide how they will vote on the racial classification initiative, Proposition 54, USC Annenberg's Institute for Justice and Journalism is distributing this series of stories -- and the following list of references assembled by graduate research assistant Shannon Seibert -- in collaboration with Alternet.org in an effort to bring context to the public discussion of the proposed amendment to the state Constitution. The stories and references also are being provided to journalists, scholars and advocates who will gather October 2-3 in Palo Alto, Calif., for a conference at Stanford University, " Colorblind Racism?: The Politics of Controlling Racial and Ethnic Data." Co-sponsored by USC Annenberg's Institute for Justice and Journalism, Stanford's Center for Comparative Studies in Race and Ethnicity and the Equal Justice Society. It will be followed by "Mapping a Strategy for Social Change" on Saturday, October 4, at the Sheraton Palo Alto.
Hispanic American Health:
MEDLINEplus: Hispanic American Health
Multicultural Health Clearinghouse: Latino/a Health Issues
Health Statistics (all ethnic and racial groups)
Quality Healthcare for African, Asian and Latino Americans (site contains great links)
Human Genome Project
Minority Health Articles
Published Journal Articles, Studies, and Books
Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care
Bach P. B. N Engl J Med 2003; 349:1296-1297, Sep 25, 2003. Book Reviews
The Institute for Justice and Journalism was created at the University of Southern California's Annenberg School for Communication with Ford Foundation funding to strengthen news coverage and public understanding of justice and civil rights issues.
Sally Lehrman, a freelance medical and science writer based near San Francisco, is an Expert Fellow of the Institute for Justice and Journalism at the University of Southern California's Annenberg School for Communication.
Resources compiled by Shannon Seibert.