Race & Health: Code Gray?
By Carl Bloice and Conn M. Hallinan
The February press conference at the annual meeting of the American Association for the Advancement of Science drew media from all over the world. The biotech company, Perlegam Sciences, was making a dramatic announcement that it had successfully associated the “genetic determinants” of many diseases with specific racial groups.
San Jose Mercury science writers Lisa Kreiger and Esther Landhuis wrote that the “discovery” suggests that “the idea of race-based medicine has new respectability” and “could help reduce health disparities among the races,” including “hypertension [that] affects black Americans at a higher rate than white Americans.”
Perlegen’s proclamation came on the heels of similar announcements about so-called “race-tailored” or pharmacogenomic drugs, including a glaucoma drug, travatan, and the heart drug, BiDil. This focus on race and medicine even includes an examination of the Pima Indian genome aimed at ferreting out the reason why Native Americans suffer adult-onset diabetes at a rate three times that of whites.
Certainly the disparity in terms of health and morbidity between European whites on one hand, and African Americans, Native Americans, and Hispanics, on the other, is a sobering one.
Heart disease deaths among African Americans are 40 percent higher than for whites, and deaths from cancer are 30 percent higher. Hispanics die from diabetes at twice the rate of non-Hispanic whites, and infant mortality for African Americans and Native Americans is almost twice what it is for whites.
But are health disparities between populations the result of genetic differences, or do they reflect something about the way those populations live? And would “race targeted” drugs improve the health of these groups, or might they end up masking the underlying causes of such disparities?
“Race,” says researcher and internist Dr. Peter Groeneveld, is an “ephemeral concept and poorly correlated with disease. It is not the most useful way to think about the human genome.”
Groeneveld is an Assistant Professor of Medicine at the University of Pennsylvania and the lead author of a recent study in the Journal of American Cardiology on racial disparity in access to heart defibrillators.
This sudden concern with race has opened up some sharp debates among researchers. There are some who are openly suspicious that the medical profession, according to University of California at Santa Cruz sociologist Andrew Szasz, is looking “for that ‘magic bullet’ that means we don’t have to deal with the issue at the heart of this matter: inequality.”
Unequal access to health care is a long-standing problem. Almost 40 years ago the National Advisory Commission of Civil Disorder, the so-called “Kerner Commission,” concluded that “The residents of the racial ghetto are significantly less healthy than most other Americans. They suffer from higher mortality rates, higher incidents of major diseases, and lower availability and utilization of medical services.”
The Commission went on to argue that in everything from medicine to education and housing, “Our nation is moving toward two societies, one black, one white—separate and unequal.”
Almost three decades later, a “Report on Racial and Ethnic Disparities in Health Care” by the American Medical Association found that little has been done to bridge the gap and that “in too many aspects of our society the movement toward two societies continues.”
The most recent study of this gulf, by the Center for Disease Control (CDC), found that African Americans die at a higher rate than whites from nearly every cause, including HIV, stroke, high blood pressure and many infectious diseases.
“We’ve been talking about this problem,” says Dr. Ben Truman, Associate Director of the CDC’s Office of Minority Health, “but we haven’t done enough in terms of resources and making sure interventions known to be effective are used widely in both populations.”
Some in the medical profession argue that drugs targeting specific genetic groups are an effective way to deliver better health. That is certainly the idea behind the heart drug BiDil, which trials suggest is more effective for African Americans than whites.
The company that makes the drug, NitroMed, argues that aiming the drug at the African American community makes sense, because “African Americans between the ages of 45 and 64 are 2.5 times more likely to die from heart failure than Caucasians in the same age range.”
But sociologist Troy Duster, Director of New York University’s Institute for the History of the Production of Knowledge, says the figures are more complex and nuanced than NitroMed would have people believe. According to Duster, the 45 to 64 age group only accounts for about 6 percent of heart attack deaths and the statistical disparity between the two groups after age 65 “nearly completely disappears.”
Jonathan Kahn of the Center for Bioethics at the University of Minnesota, even disputes the claim that African Americans suffer heart failure at twice the rate of whites.
“The most current available data,” he writes in his seminal study of heart attack statistics, indicate the rate “is 1 to 1:1″ He adds, Uncritical acceptance and promulgation of inaccurate date mbe be distorting current efforts to address the real health problems associated with heart failure and also lends credence to those who argue that race can and should be used as a biological category.”
Hypertension is indeed a problem for African Americans, but the black-white disparity is “significantly smaller,” says Duster, among black populations in Brazil, Trinidad, and Cuba, suggesting the condition is more about the social experiences of these populations than problems in their genetic structure.
A recent study in Puerto Rico by anthropologists Clarence C. Gravlee and William W. Dressler concluded that there was “no association between skin pigmentation and blood pressure.”
Medical researchers are presently examining the genome of Pima Indians trying to identify a gene that might be related to diabetes. But biological anthropologist Jonathan Marks of the University of North Carolina thinks researchers are looking in the wrong place.
“The Pima are the fattest people on earth, with lots of diabetes,” he says, “but that is only since World War II. If you look at pictures of Pima before that, they look like everyone else.”
Marks says that instead of searching for some kind of “genetic” explanation for the diabetes plague, researchers should be examining the “enormous changes in life style the Pima have gone through,” changes that include not only an increase in fatty, high carbohydrate foods—“the same food that is making all Americans fat”—but also alcohol use. “They drink because reservation life sucks,” he says.
Critics of those who correlate disease with race have come under fire recently for sacrificing science in the name of “political correctness.” In “Medicine’s Race Problem,” Dr. Sally Satel of the conservative American Enterprise Institute (AEI) argues that attacks on race-based medicines are engaging in the “censorship of inquiry.”
Satel points to the new heart drug BiDil as an example of how race can be associated with both disease and treatment. Tests indicates that many African Americans have less nitric oxide (NO) in their cells than European Americans and, therefore, usual heart medicines are not as effective for them as they are for whites. BiDil appears to replenish NO supplies.
But do African Americans have lower NO levels in their cells because of some genetic anomaly? Or, as David Goldstein and Huntington Willard of the Duke University Institute of Genome Science and Policy ask, might it be a side effect of the higher levels of lead and pesticides among African Americans?
Certainly the idea of using genetics to deliver drugs “holds promise,” says sociologist Duster, but he warns against using “phenotype”—how people appear,as opposed to their actual gene markers, as a basis for treatment.
Hubbard says that the rub comes when you start associating gene frequencies with certain populations. “The job of medicine is to treat an individual, not a group. By looking at a group you are lible to overlook the individual’s particulars.” She also points out that simply treating the condition could end up diverting researchers from its real source.
Satel argues as well that higher cancer mortality rates among African American women are race related. African American women have a 50 percent higher incidence of breast cancer before the age of 35.
But as Harvard’s Hubbard argues, figures like these do not indicate “inherent, biological differences” between blacks and whites.
The problem, she says, is that U.S. health statistics are presented without reference to employment, income, housing, and healthy living. And not taking social class into account can skew results.
Epidemiologist Nancy Krieger, for instance, found that when social class is taken into consideration, the breast cancer mortality differential between whites and blacks drops from 1.35 to 1.10.
“When we use science to investigate subjects like race and sex, which are suffused with cultural meanings and embedded in power relationships, we need to be wary of scientific descriptions and interpretations that support, or even enhance, the prevailing political realities,” Kreiger and New York Department of Health Deputy Commissioner Mary Bassett, conclude in their study.
It is not just who you are, but also where you live.
The Bayview Hunter’s Point neighborhood on San Francisco’s northern edge is a case in point. The 34,800 residents of the 3 1/2 mile section of the city live amidst a federal Superfund site, two power plants, the city’s main sewage treatment plant, almost 200 leaking underground fuel tanks, 124 hazardous waste handlers, and a recycling plant.
Forty-eight percent of its residents are African-American, 17 percent Hispanics, 23 percent Asian Pacific Islanders, and 10 percent are European whites. Nearly 40 percent of its residents earn less than $15,000 annually, almost double that percentage for the rest of the city. Unemployment rates are twice those of the surrounding city.
The neighborhood is a public health disaster. Rates of cervical and breast cancer are twice that of the rest of the Bay Area, and hospitalization for congestive heart failure, hypertension, diabetes and emphysema are three times the statewide average. The “Point” and neighboring Potrero Hill account for more than half of the all infant mortality in San Francisco.
Environmental justice community organizer and Green Action board member Marie Harrison says what is happening in Hunter’s Point-Bayview is “common across the country.” She says an expert told her, “‘You take me to any city in the country and show me the highest point, tell me where the factories are, and tell me which way the wind blows and I can tell you about the environmental conditions and who lives there.'” She adds, “Where you have the greatest pollution, that is where the poor folks live.”
Sociologist Szasz, who has studied “environmental racism” extensively, agrees: “No one sends a brown or black baby home with a bag of industrial waste, but that is the effect of living where most of these people live.”
The transcription of the human genome has been not only a windfall for geneticists, it has created new markets for drug companies. But many medical researchers and health providers question the priority of looking for new drugs rather than concentrating on improving health care for under served populations.
For instance, a recent study in the American Journal of Public Health indicates that ending the disparities in health care would be a far more effective way to improve health for African Americans than new drugs. “Five times as many lives can be saved by correcting the disparities [in health care between blacks and whites] than in developing new treatments,” says Dr. Steven H. Woolf, lead author of the study, and Director of Research at Virginia Commonwealth University’s Department of Family Medicine.
The study showed that from 1991 to 2000, some 886,000 deaths could have been prevented by ending disparities in care, while only 176,633 were averted because of improvements in medicine. The authors conclude, “The prudence of investing billions in the development of new drugs and technologies while investing only a fraction of that amount in the correction of disparities deserves reconsideration.”
Pennsylvania internist Groeneveld is also worried that thinking about medicine in terms of race could produce a dangerous side effect. “Equality is what concerns me here,” he says, “If more and more therapies are devised for racial groups, it is inevitable that they will benefit Caucasians—because they are the larger group—at the expense of other populations. I am concerned that such therapies will focus on the main population, which is where the money is.”
Duster strongly agrees. “Do you actually think high end molecular medicine will be for black people?” he asks, adding “This was always for people of privilage.”
Many biologists are leery of trying to define race, not just because of the social implications, but because it not very good science. “We don’t have the tools to use this information predicatively,” says Hubbard.
Does the term “race” have a place in medical care? As a biological category, the majority consensus seems to be “no.” But many social scientists argue that as long as racism is an aspect of our world, the term has real value, and the reason why so many oppose efforts like that of former University of California Regent Ward Connerly to abolish the use of race-based data.
“In health care, we are convinced it is legitimate to use traditional categories of racial differences when engaging in studies of the pernicious effects of racism itself,” writes Koenig, Lee and Mountain. Koenig argues that an undue emphasis on genetics at the expense of social factors derails a real solution. “If you look at the history of improvements in life expectations in the industrial west, the things that make the most difference in terms of overall health status were not medical intervention, but those in the social domain.”
Groeneveld suggests that there has to be “a turn around” on how hospitals are reimbursed for providing health care and for upgrading technology. “There are ways to make hospitals better. There needs to be reimbursement for quality care. Medical hospitals that take care of the indigent and poor should be better reimbursed.”
The recent assault on employer provided health care is adding to the growing numbers of Americans with reduced benefits or without health coverage at all. According to the Kaiser Family Foundation, while employee costs were rising 9.3 percent in 2003, benefits were being reduced. Some 8 percent of large private employers cut health benefits for retirees in 2004 and 11 percent plan to do so in 2005.
At the same time as private health plans are becoming more costly and covering less, 34 states have either cut or tightened Medicaid for the poor, among whom minorities are historically over represented. An estimated 15.6 percent of the population, or 45 million people, were without health insurance coverage in 2003, up from 15.2 percent and 43.6 million people in 2002.
Minorities are more likely to be uninsured than the population as whole. More than a third of Hispanics and over a quarter of Native Americans are uninsured compared to 13 percent of whites. The uninsured rate for African Americans stands at 21 percent and for Asian Americans at 20 percent.
Ludmilla F. Wikkeling-Scott, MPH, a legislative assistant to Rep. John Conyers, (D-Mi) and former public health specialist with the Department of Health and Human Services, notes that the problem of race-based health disparities has been the subject of discussion for many years. “We have gone from Healthy People 2000 to Healthy People 2010, from “decreasing the gap” to “eliminating the gap” of health disparities,” she says. “Yet, we are still struggling to address these issues in minority communities most affected by such disparities.”
Wikkeling-Scott points to Dr. W.E.B. DuBois’s 1899 study “The Philadelphia Negro,” calling it a sophisticated “needs assessment” of the status of health in the black community and notes “Now, more than a century later, the most sophisticated state of the art medical solutions cannot provide us with answers to the dilemma. The same disparities brought to our attention then are still profound today.”
Racial disparities in health care are clearly multi-faceted, the issues surrounding race-based therapies complex. However there is widespread agreement that the key to improving the health indicators in minority communities lies in leveling the field in health care access and delivery.
“When we return to communities to take care of our people, not for the money but for the simple fact that everyone deserves care, this will bring us one step forward to eliminating health disparities in minority communities, says Wikkeling-Scott. “Without access, we have nothing.”
That is also an assumption behind the effort in Congress to move toward a universal system. Pointing to legislation introduced by Representative Conyers (D-Mi), Joel Segal, a spokesman for the Congressman says, “The only way to eliminate economic and racial disparities is to through universal healthcare. Right now it is the way to get rid of a system that it inherently separate and unequal. We must end the situation of a large number of people uninsured.” Conyers’ bill, he says, “would essentially mean Medicare for all.”
Deborah Burger, RN, president of the California Nurses Association, says, “Some of the problem of racial health disparities is the differences in economic status but when you think it about it there is surely also a connection with where people live – how much pollution there is and how much access to healthcare facilities. In the end it all has to come down to the need for universal access to one standard of care. The big questions are: Can you afford adequate healthcare? Does you job provide for insurance and, if so, what kind?
“You cannot eliminate the disparities until you address the inequities in the current system. We in CNA see this as another important reasoning for pressing ahead toward a universal healthcare system.”