The "Colorblind" Attack on Your Health
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The story seemed to be yet another tale about the battle between science and politics in the Bush era. The facts certainly fit the mold: Federal technocrats examine a grave challenge facing America, and political hacks obstruct, censor or otherwise alter their research. But this time it didn't make sense. There was no political payoff; everyone already knew colored folks weren't healthy. So why bother?
Because the cornerstone of post-civil rights conservative thought was under assault. Few concepts are less malleable than mortality. And thus, few measurements pose a greater threat to the modern right's core supposition of equality than a tally of who lives and dies from preventable and treatable diseases.
In 1999, Congress ordered the federal Agency for Healthcare Research and Quality to begin preparing annual reports on whatever racial and economic disparities may exist in the national healthcare system. The request was a sign of the times. In the previous decade, everybody from Beltway politicos to Ivory Tower academics had reached rare agreement on the idea that Americans' wellness differs greatly according to race.
The resulting document, completed in 2003 and grandly named the National Healthcare Disparities Report, confirmed what was by then a hardening conventional wisdom. "This first report clearly demonstrates that racial, ethnic and socioeconomic disparities are national problems," the authors unflinchingly concluded, "that affect healthcare at all points in the process, at all sites of care, and for all medical conditions." The executive summary further delineated the key findings that "inequality persists," that Americans pay "a personal and societal price" for this unevenness and that more research is needed to figure out how to fix it. That June, the technocrats submitted this draft for the standard approval process to then-Secretary of Health and Human Services Tommy Thompson (who, as governor of Wisconsin, pioneered "welfare-to-work" programs).
Thompson's office released a strikingly different document six months later -- just three days before Christmas, a timing that helped it get lost in the holiday shuffle. The data itself was unaltered, but the executive summary that put the data into perspective for busy lawmakers drew starkly different conclusions than those of the draft. It omitted references to "disparities," instead calling them "differences." And it tepidly summarized the technocrats' research by stating, "This report finds that, while most Americans receive exceptional quality of healthcare and have excellent access to needed services, some socioeconomic, racial and ethnic differences exist."
The new version further reshaped the key findings for Congress by bizarrely adding examples of areas in which people of color fare better than everybody else -- examples that the report's own data undermined. It cited lower cancer death rates among Asian/Pacific Islanders and Native Americans -- it turns out Native Americans die less from cancer because their life expectancy is already dramatically shortened by a host of other preventable illnesses. It noted that blacks and Latinos are more likely to report that their doctors ask about previous medication before prescribing new ones. But that's because blacks and Latinos are far less likely to have regular physicians who would already know their health histories.
Someone leaked the report's draft version to California Rep. Henry Waxman's office, and Waxman led an outraged coalition of congressional members in calling the administration to task over the edits. Secretary Thompson ultimately told a House hearing that "some individuals took it upon themselves" to make well-meaning edits, but he promised the original version would be published unaltered. And with that, another chapter in the science vs. politics debate was closed, leaving observers wondering why Thompson's staffers had caused all the fuss in the first place.
"There was nothing political in the earlier version of the report, nothing that pointed a finger at the Bush administration," one member of the report's advisory committee remarked to a New England Journal of Medicine op-ed writer. "It is a mystery to me why it was changed."
The reasons for changing the National Healthcare Disparities Report stretch far past mere partisan politics. "This is part of a much larger issue," argues City University of New York (CUNY) researcher Jack Geiger, one of the nation's most outspoken academics on the existence of race-based disparities in health. "It is the contention that the civil rights movement succeeded. There is no more discrimination or racism. And therefore if there are persisting differences, then it must be their own damn fault. It can't be what we're doing.'"
For three decades, conservative thinkers have worked mightily to discredit race-based considerations in public policy and cement the belief that America today is, as it should be, a colorblind society. "It really begins in the early '70s," says Bard University sociologist Amy Ansell, author of New Right, New Racism . "Conservatives believe that with the civil rights movement the barriers were brought down, and that's when racism ends. At that point, government and society have nothing more to do."
Instead, as Geiger suggests, the answers are said to lie in changing the behaviors of people of color. Notably, as with the healthcare disparities report, conservative activists do not deny the existence of inequality. To the contrary, says Tarso Luis Ramos, research director of Political Research Associates, a progressive think tank, they nominally share anti-racists' outrage over the gaps. "The rhetoric acknowledges disparities and even decries them on one hand, and on the other hand rejects proposals to reduce these disparities," Ramos says.
A circuitous intellectual route squares this circle of thought. Colorblind ideology rests on two premises: reducing racism to "individual acts of meanness," as Ramos puts it, and blaming unequal outcomes in any given area on the cultural norms of individuals affected. Like Ansell, Ramos traces the "new racism" to the years following the civil rights movement, and in particular the infamous Moynihan Report, which he argues established the idea that blacks' troubles stem from the destructive devolution of their culture.
In the ensuing years, Ramos says, right-wing thinkers and advocates built on this premise. They stroked America's individualist ethos as they steadily narrowed racism's definition to exclude broad, structural factors. And they drove home the idea that both oppression and liberation lie in individual rather than societal acts -- that, where racism is concerned, I, rather than we, shall overcome. As a result, efforts like affirmative action are dismissed because they misdirect the burden of fighting racism onto individuals who are not racist, while failing to address the impossibly complicated cultural deficiencies that actually hold people of color back.
Fifty-eight percent of the state of Michigan agrees. Amid the din of celebration that followed last November's elections, few remarked on the state's historic vote to ban affirmative action programs in the public sector. With the support of colorblind-movement leader Ward Connerly, who helped pass similar initiatives in California and Washington state, supporters gathered more signatures than ever collected in support of a local ballot initiative.
The campaign sought to convince white voters that their children were being denied admission to the University of Michigan in order to make room for black applicants, notwithstanding the fact that only 330 members of the school's 5,300-person freshman class was black this year. Opponents were painted as political fossils out to preserve ill-gotten personal privileges; syndicated columnist George Will called them "thuggish."
"Colorblind ideology," says Ramos, "is now the dominant frame for race in America today."
But one arena in which the colorblind movement has so far failed has been healthcare. In fact, public health has rushed down a directly opposing path on race. Starting in the mid-1980s and rising to a crescendo during the Clinton administration tenure of Surgeon General David Satcher, who is black, public health has become consumed by questions about racial disparities.
This is in no small part because the evidence is uniquely damning. Since the civil rights movement's close, blacks in particular have made no progress on what may be the most important measure of social well-being: living to see old age. According to a 2005 paper coauthored by Satcher for a special racial disparities issue of the journal Health Affairs , an alarming 40 percent gap between black and white mortality rates hasn't budged in the last 40 years. In an accompanying article, University of Michigan sociology and epidemiology professor David Williams highlighted specific death trends. Black and white death rates from heart disease were equal in 1950; by 2002, blacks died 30 percent more often. Blacks had a 10 percent lower cancer death rate than whites in 1950; now it's 25 percent higher. The infant mortality gap doubled between 1950 and 2002.
As researchers have documented this divide, they've also begun tracking the reasons for it. In 1998, CUNY's Geiger led a massive literature review of the existing information on racial health disparities. His work focused on bias in the delivery of care. Prior to the 1960s, he says, discrimination in the healthcare system was overt and dramatic -- segregated hospitals, black wards housed in dank cellars, emergency rooms turning away dying nonwhite patients. But after Jim Crow's nominal ousting from healthcare, the bias took more nuanced forms that were harder to measure or track. As a result, throughout the 1970s, most information about bias was anecdotal.
In the 1980s, researchers gained access to Medicare data that made possible real comparisons of what sort of care Americans were getting in the post-civil rights era. Medicare leveled the analytical field -- everyone had the same insurance -- and the program collected a trove of data, allowing researchers to control for a host of factors and isolate race. Suddenly, a flood of studies began documenting disparities in both care and outcomes.
Policy makers have taken notice of all of this. Satcher had the health department target a number of diseases with the most egregious disparities -- heart disease, diabetes and HIV/AIDS, among others -- and Thompson at least nominally maintained those priorities under the Bush administration. Republican and Democratic lawmakers alike have drafted legislation calling for more data and targeted funding, and in 1999, in addition to ordering up the annual National Healthcare Disparities Report, Congress directed the Institute of Medicine (IOM) to prepare a seminal study on health disparities that prescribed policymaking remedies. It's this titanic report that has most animated conservative naysayers.
Released in 2002, the IOM's report rocked the healthcare world. Conventional wisdom had thus far been that racial health disparities were primarily due to access to care, that people of color got sick and died more often because they were more likely to be uninsured or underinsured.
But the IOM study asserted that much more was at play. It declared that even given the same insurance, the same income and the same type of treatment facility, people of color were less likely to receive quality care. The disturbing gap existed across a wide range of treatments -- breast cancer screenings, angioplasties, hip fracture repairs, and on and on. Whites were even more likely to get an eye exam than nonwhites.
The IOM cited a host of complex and dynamic causes for this inequality. There were structural factors, such as financial incentives to limit services given to poor patients; communication factors like missing translators or English-only signage and literature; even factors driven by the patients themselves, whose own beliefs and preferences led them to refuse certain types of care or fail to follow doctors' instructions. But what grabbed everyone's attention was the IOM's charge that at least part of the disparity results from care providers making racist and stereotyped decisions about when and what treatment to offer.
"It was a landmark," says Geiger, who contributed to the report. "And the IOM had the resources to publicize it, and the science reporters in the country paid attention -- and it confronted the wishful beliefs of both the profession and the public."
If so, it was a confrontation that conservative thinkers rose to meet.
"What I'm focusing on is this word 'disparity,'" author and psychiatrist Sally Satel told a February 2006 forum on her new book, "The Health Disparities Myth." "If you look it up in the dictionary, it is a perfectly neutral word. It means difference. But over the last few years, it has taken on another connotation. It has taken on the meaning of that of injustice." Satel and other conservative thinkers make no effort to counter the facts of racial health disparities; their arguments turn on the cause. "We acknowledge that healthcare certainly varies by race," Satel explains, "but we challenge the idea that it varies because of race " (emphasis added).
Satel and the American Enterprise Institute (AEI), which published her book, are at the center of the colorblind movement's efforts to take racial justice out of public health. Founded after Word War II to advocate for business interests in postwar economic policymaking, AEI has nursed some of the right's biggest names to stardom, from neocon forefather Irving Kristol to Supreme Court Justice Antonin Scalia. Ronald Reagan stacked his administration and the federal bench with AEI scholars in the 1980s. And today, the comfortably endowed think tank shells out $20 million a year to promote conservative ideas in Washington policy circles. It's also long been a spirited combatant in the race wars: Charles Murray penned his "Bell Curve" offensive as an AEI fellow.
Satel has taken up the healthcare attack for AEI and in turn for the colorblind movement. She first burst into the discussion with her 2000 book "P.C., M.D.," in which she charged that left-wing "indoctronologists" were "corrupting" medicine with dangerous "politically correct" ideas and practices. The book drew attention in part by flogging alternative therapies as quackery, but its real point was to bemoan the new consensus on linking social justice and public health.
In this, she echoed one of AEI and the colorblind movement's favorite themes: personal responsibility. That phrase, bandied about Washington throughout the 1990s, found its most celebrated moment in the welfare-to-work campaign, which produced the 1996 Personal Responsibility and Work Opportunity Act. Satel brushed the dust off the notion and introduced it to health policy, warning that the intrusion of social justice into healthcare dangerously erodes the self-evident principle that personal choices play a key role in health. "The indoctrinologists have swooped in under the radar," she wrote. "And their prescriptions -- which ultimately are not about health, but rather about narrow ideas of social justice -- will be hazardous to our health."
Satel led a chorus of outrage emanating from AEI over the IOM's report. Critics set aside the report's range of diagnoses and prescriptions to narrowly focus the debate on those involving racism at the clinician level. And they enhanced the personal responsibility mantra with an equally compelling -- and once again familiar -- assertion: that focusing on racial justice actually further erodes quality of care by unjustly promoting affirmative action and discouraging doctors from taking race-based cultural and biological factors into account in treatment decisions.
The affirmative-action argument is the most familiar. Satel and AEI have taken particular aim at the IOM's call for policies that get more people of color into the health professions and for more enforcement funding for the health department's Office of Civil Rights. "All agree that it is important to close the gap," a responding AEI press release insisted, "but the report offers some unrealistic, even potentially harmful, solutions that involve turning the disparity issue into a civil-rights problem."
Interestingly, there exists widespread agreement on all sides of the debate about how the wellness gap plays out. The controversy is what to call this gap -- leading to odd semantic jousts like the one surrounding "disparities" versus "differences." To conservatives, the "differences" are value-neutral and stem from natural factors like culture and biology, not political or social ones. As with racial profiling in law enforcement and national security, it's this assertion that makes medical stereotyping worthwhile yet renders considerations of social justice destructive. And as we've also seen in other areas, it's this equation that paves the way to individual and private solutions rather than public ones.
Satel deftly employs a rhetorical slight-of-hand when defending doctors' practice of making treatment decisions about individual patients based on their race. In essays published by both the Wall Street Journal and the New York Times , she has scoffed at the widespread belief that the Human Genome Project -- which established in 2000 that 99.9 percent of human genes are the same -- proved race to be a social rather than biological construct.
In the Times article, titled "I Am a Racially Profiling Doctor," she compellingly argued that race was an admittedly imperfect but nonetheless crucial clue for doctors making diagnoses and deciding how to treat. "When it comes to practicing medicine, stereotyping often works," she wrote, listing a number of racial patterns that guide her clinical choices. Blacks appear to metabolize antidepressants slower, so she starts all black patients on low doses; blacks do less well in Hepatitis C treatment, so she counsels all black patients on their limited chances of success. "So much of medicine is a guessing game -- and race sometimes provides an invaluable clue."
But one woman's clue is another's prejudice. It's the sort of generalizing Satel boasts about that leaves people of color with unequal care. "Discrimination can be a scary term, as it frequently conjures up images of nefarious actors engaging in conscious acts of bigotry," writes University of Maryland health law scholar Thomas Perez in the IOM report's chapter on civil rights. "Discrimination in today's healthcare marketplace is much more subtle."
University of Minnesota researcher Michelle Van-Ryn led one key study examining those subtleties. Her team surveyed heart patients and doctors involved in 618 encounters at eight New York hospitals in which post-angiogram treatments were discussed. The doctors were overwhelmingly white, and the patients were split roughly evenly between black and white. Van-Ryn found doctors more likely to hold a host of negative beliefs about the black patients: They were presumed to be more likely to abuse drugs or alcohol and less likely to be educated, comply with physicians' instructions, want an active lifestyle or participate in cardiac rehab if prescribed. Among low-income blacks and whites, doctors were far more likely to consider white patients both "pleasant" and "rational" than black patients. Doctors were even more likely to say the white patients were "the kind of person I could see myself being friends with" than the black patients.
"Of course, what you're looking at are the classic stereotypes -- lazy, uneducated," says Geiger. He argues those stereotypes have shaped care for decades and that public health has consistently found excuses for racial gaps in wellness that have always existed. "The first explanation was that Negroes were biologically inferior. That was replaced gradually by the notion that it's their own fault. They drink, they smoke, they don't live right."
In that sense, Satel's defense of profiling sets up a new twist on an old theme: Racism isn't to blame for health disparities, but rather race itself. Satel and her cohorts insist that it's not just doctors who must keep an eye on essential racial differences in patients, but drug makers too. And that's one plank of the colorblind movement's offensive against social justice's incursion into healthcare that is fast gaining ground.
In 2005, the Food and Drug Administration (FDA) approved the first "race drug," called BiDil. The drug is designed to counter nitric-oxide deficiencies in the blood, which studies have suggested are more likely to befall blacks. Nitric oxide helps expand blood vessels and thus fends off heart attacks. The manufacturers tested BiDil in a cohort of more than 1,000 African-Americans already in treatment for heart disease and found that those using the drug had a whopping 43 percent better chance of surviving than those taking a placebo. That success is particularly impressive given the fact that blacks have been shown to do far less well on other heart medications than whites.
But it's still unclear whether BiDil works better for blacks than whites, largely because the manufacturer is decidedly uninterested in that particular question. In an October 2005 article in Health Affairs ' online edition, researchers Pamela Sankar and Jonathan Kahn lay out the disturbing process by which BiDil won its race-specific patent. The drug combines two generic components long known to be individually successful in reducing mortality from heart disease. BiDil's manufacturer, NitroMed, put the generics together and studied the new combination's effectiveness for one racial group. The generic combination is likely just as successful for all groups, but proving that would not have won NitroMed a new patent -- one that was expected to generate $120 million in just the first year of sales. NitroMed priced the new drug at $1.80 a pill, nearly double the cost of some existing therapies and adding up to as much as $10.80 for a day's dosage.
Despite these facts, blacks have been among the drug's most enthusiastic cheerleaders. "This is the most important advance in treatment of black people that I have seen in my lifetime," gushed Charles Curry, who heads the International Society on Hypertension in Blacks. The Association of Black Cardiologists provided crucial support in recruiting participants for BiDil's clinical trials. The same enthusiasm exists for exploring genetic determinants of racial health disparities in general. Howard University has set up its own gene bank of black samples for health research purposes. It's an outpouring of support that Satel has eagerly highlighted.
BiDil shows that, ironically, arguments about the essential nature of race just may be the wedge issue the colorblind movement needs to change the consensus on racial health disparities. "I can see how there'd be enthusiasm," says Bard's Ansell, "because issues more directly pertinent to blacks are getting [rare] attention." But Ansell fears the discussion of race-based drugs is merely a reemergence of old ideas about the inherent, and thus unchangeable, differences between races.
For Ramos, this is where the colorblind movement's reframing of race has been successful in other areas. "They're naturalizing these disparities, so that society itself bears no responsibility," he says. If public health advocates are going to avoid becoming the movement's next beachhead, he warns, they'll have to insist the conversation stay focused on the dramatically disparate outcomes researchers have begun tracking and not be seduced by rhetoric that asserts a common goal without being prepared to take steps to move those outcomes. As Satel succinctly puts it, "This is very important, of course, because it dictates what our policy solutions are going to be."
REPRINTED WITH PERMISSION: ColorLines magazine, www.colorlines.com.