20 years ago, a landmark report spotlighted systemic racism in medicine. Why has so little changed?

This special report is the first of two parts. Read part 2 here.

The 764-page report minces no words about the inequality rife throughout medical care: “Racial and ethnic minorities experience a lower quality of health services, and are less likely to receive even routine medical procedures than are white Americans.”

Those words might have been written recently, amid a pandemic that has disproportionately sickened and killed people of color. In fact, they were written two decades ago.

“Unequal Treatment” was the first major report to point to longstanding systemic racism — not poverty, lack of access to health care, or other social factors — as a major reason for the nation’s deeply entrenched health disparities. The authors, a blue-ribbon panel of the National Academies’ Institute of Medicine, hoped their work would kickstart a national discussion and lead to much-needed change.

At the time, the report sent shock waves through medicine. David R. Williams, a committee member and health equity scholar then at the University of Michigan, called the findings “a wake-up call for every healthcare professional.” There were front page headlines, pointed editorials, and several congressional hearings. “For us as people of color, we are just not going to be sick and tired anymore,” Donna Marie Christensen, a physician and congresswoman representing the U.S. Virgin Islands, said at an April 2002 hearing held a few weeks after the report’s release to push the Department of Health and Human Services to do a better job.

But today, the disparities — poorer outcomes and higher death rates for nearly every medical condition the panel examined — and the structural racism underlying them, remain. That grim truth has been made startlingly clear by both the pandemic and by statistics that show Black Americans continue to die up to five years earlier than those who are white.

“There hasn’t been a lot of progress in 20 years,” said Brian Smedley, a health equity and policy researcher with the Urban Institute who served as the report’s lead editor. “We are still largely seeing what some would call medical apartheid.”

The Centers for Disease Control and Prevention estimated that in 2019, some 70,000 Black Americans — nearly 200 per day — died prematurely, many from chronic conditions like heart disease that could have been better treated. To Williams, the death toll is nothing less than the equivalent of a fully loaded jumbo jet falling out of the sky each day.

“Can you imagine?” Williams, now at the Harvard T.H. Chan School of Public Health, asked recently. “Congress would be holding hearings and moving heaven and earth. … Why are we so laid back about this loss of life on an unprecedented scale?”

Why, indeed? And why has there not been more work, legislation, and progress when the issues laid bare by Covid — poorer care and higher death rates for people of color — were established so clearly and with such precision two decades ago? Why were so few of the report’s 21 detailed recommendations put into place? To examine these questions, STAT spoke with the people who created the landmark report about why the disparities they highlighted have remained so intractable.

The reasons they point to are myriad: Our national discomfort with confronting the long-taboo topic of race remains a roadblock, as does widespread denial among health care providers that they may be part of the problem. Other issues include complacency; a lack of consistent political will to eliminate inequities; health disparities work being elbowed out of the way when other priorities arise; a fragmented health care system that isn’t amenable to universal solutions; and a dearth of quality racial and ethnic data needed to track whether efforts to end disparities are working.

While the report’s anniversary raises deeply unsettling questions about why so little progress has been made in the past 20 years, the question now is whether the spotlight aimed on racism in medicine by the pandemic will finally spark lasting change, or whether this moment of opportunity, too, will pass.

A different epidemic, AIDS, was sweeping the nation when the issue of health disparities first reached the national stage in 1985. That year, HHS, under the leadership of Margaret Heckler, released a comprehensive national study demonstrating that people from many racial and ethnic groups had higher burdens of disease and lower life expectancies than white Americans. Known as the Heckler Report, the document was a wake-up call. But much of the follow-up to the report sidestepped the issue of racism, focusing instead on whether the disparities were caused by factors such as gaps in income, education, or insurance coverage.

Some 15 years later, Congress directed the National Academies to look specifically at whether racism, bias, discrimination, and stereotyping also played a role. “We had an important opportunity to see if race and racism mattered,” said Smedley. “And it mattered.”

The report showed — in exacting detail and with mountains of evidence — that people of color were less likely to receive the medical care and procedures they needed even when controlling for factors like insurance status. It showed that Black and Hispanic patients tended to receive lower-quality care for a number of diseases, including cancer, heart disease, HIV/AIDS, and diabetes, and that disparities were found even when clinical factors like comorbidities, age, and severity of disease were taken into account. The disparities were found across a range of clinical settings, including public, private, and teaching hospitals, and were tied to worse outcomes for patients.

“Despite steady improvement in the overall health of the U.S. population, racial and ethnic minorities, with few exceptions, experience higher rates of morbidity and mortality than non-minorities,” the report said, calling the worse medical outcomes “unacceptable.”

What came as a shock at the time, even to some IOM committee members, was the finding that unconscious bias and stereotyping among doctors, nurses, and other health care providers contributed to the poorer care patients of color received. “Research suggests that healthcare providers’ diagnostic and treatment decisions, as well as their feelings about patients, are influenced by patients’ race or ethnicity,” the report said. The authors also cited the lack of physicians of color and language translation services, a dearth of medical facilities in some low-income neighborhoods, and a shift to managed care in government-run health programs as examples of systemic racism.

In health care circles, responses to the report fell largely into two camps, Smedley said. Some knew the disparities were real because they had lived them or knew the medical literature, while others were outraged by the notion that doctors might be biased. “People were shocked. They were aghast,” said Smedley. “People say, ‘Yes, health care inequities are real, but not in my practice.’ I hear that to this day.”

“Part of what we are struggling with in the U.S. is we are unwilling to learn our history and unwilling to accept our complicity when it comes to racial inequality,” he added.

Alan R. Nelson, a retired Utah physician and former president of the American Medical Association, chaired the committee, a role he describes as a highlight of his career. He credits the report with raising awareness among medical organizations. “They all woke up and said, ‘This is a problem and we need to do something about it,’” he said.

But doing something about disparities is hard, he said, because there are so many contributing factors. And denial remains widespread. “If you surveyed 1,000 American doctors and asked, ‘Do you practice in a way that contributes to health care disparities?’ they’ll all say no, because they really believe they don’t contribute to health care disparities,” Nelson said. “It’s a big problem.”

In one echo of how little thinking about racism has changed among health care providers, a Journal of the American Medical Association podcast host claimed last year that doctors can’t be racist.

Twenty years ago, open discussions of race and use of the term racism were deeply uncomfortable for many in medicine and science. Williams said a reviewer once told him outright the term didn’t belong in a scientific paper.

On one hand, there’s been progress: Racism is now more commonly used in both papers and discussions and is increasingly seen as a legitimate area of scientific study. But health equity scholars say they now fear a cultural backlash spawned by more open discussions of race. Recently, two dozen white nationalists protested outside a Boston hospital against a pilot project aiming to eliminate racial disparities in cardiac care. The backlash includes calls to prohibit the discussion and teaching of critical race theory on college campuses and opposition to exposing medical students to antiracist ideas.

“It’s honestly chilling me to the bone. I am so concerned about this movement,” Paula Lantz, a professor of public policy and health management policy at the University of Michigan, said at a recent health equity summit held by the Hastings Center. “There can be no progress toward health equity without the naming, framing, and dismantling of structural racism.”

The Latina daughter of a migrant farm worker from Fresno, Calif., Carolina Reyes had grown up never seeing physicians who looked like her. Now a specialist in high-risk maternal-fetal medicine in Sacramento who teaches at the University of California, Davis, Reyes helped create the report while a young faculty member at UCLA.

Reyes said the report broke a lot of new ground. “It was the beginning of the recognition that health care providers played a role, that by stereotyping and bringing in their own biases, they contributed to unequal treatment.”

There has been some improvement in recent years, she said. Mandated by Congress, the federal government now reports on health care quality and disparities experienced by racial and ethnic groups, and many clinics and hospitals offer translation services to non-English speakers. Reyes remains wistful, though.

“It’s amazing. It’s 20 years later and it feels like we haven’t moved the dial very much,” Reyes told STAT. “At the time, there was a level of excitement about what we could change, but with everything that’s new, it can wane.”

“Looking back, there was a feeling of complacency about disparities, that they were there because people have different lives,” she said, “instead of saying, ‘Wow, this is unjust.’”

Complacency about health disparities has been a recurring problem. At a 2010 workshop held by the National Academies to assess how much progress had been made since 2000, Smedley and Williams reported that the issue had gained less traction than they’d hoped because other national issues, such as the economic downturn of the time, had taken center stage. They also noted that the election of Barack Obama may have hurt the cause; people were more easily able to tell themselves racism didn’t exist in a country that had elected a Black president. Today, some fear that the widespread urge to return to a post-pandemic “normal” may allow attention on health equity issues to recede.

Many who work in the field of health equity like to say that the long arc of history eventually bends toward justice. But as it bends, it can also wobble: The story of health equity in the U.S. is a fragile one, full of progress and retrenchment. “By my count, we are in our fourth great awakening for health equity,” said Daniel Dawes, a health policy expert who wrote “The Political Determinants of Health” and leads the Satcher Health Leadership Institute at the Morehouse School of Medicine.

These awakenings, he told STAT, include Abraham Lincoln’s policy to provide health care to newly freed people and poor white people; desegregation of hospitals in the 1960s due to Medicare and Medicaid legislation; passage of the Affordable Care Act and the publication of major reports on health disparities such as “Unequal Treatment” this century; and, of course, the current moment.

The big question, Dawes said, is whether this time, there is a political and national will to finally end these disparities. Doing so, notes David Satcher, who was U.S. surgeon general when the report was being produced, would save far more lives each year than medicine’s boldest high-tech interventions.

Other authors of “Unequal Treatment” share the frustration that more hasn’t been done. “It’s not as if we don’t know what to do,” said Risa J. Lavizzo-Mourey, a former president and CEO of the Robert Wood Johnson Foundation and professor emerita at the University of Pennsylvania who was one of the IOM committee’s vice chairs.

One problem, Lavizzo-Mourey told STAT, is that the report’s nearly two dozen recommendations were embraced in some quarters, but never taken to scale. There has been no coordinated effort to counter the structural racism the report uncovered, she said, adding that such efforts remain challenging because the nation’s health care system is so fragmented. “You’ve got the federal government, the DOD [Department of Defense], the VA, and Medicare, then you have 50 states that weigh in,” she said. “This is the problem with changing anything in the health care system. It’s not a system.”

The Affordable Care Act has increased access to health care to many people of color, Lavizzo-Mourey noted. Hundreds of cities and counties, and even the CDC, have called racism a public health issue. The government’s Agency for Healthcare Research and Quality issues a report on health disparities each year. And the National Institutes of Health upgraded its Center for Minority Health and Health Disparities from a center into a full-fledged institute.

But that progress has been spotty. For example, while the collection of racial and ethnic data to track disparities has improved since 2002, it’s still largely a mess.

At the time the report was written, most work on health disparities focused on Black patients; there was much less focus on those from other races and ethnicities. “Native Americans and Alaskan Natives went into the ‘other’ category. We were lost to a certain extent,” said Jennie Joe, a medical anthropologist and professor emerita of family and community medicine who recently came out of retirement to serve as interim director of the Wassaja Carlos Montezuma Center for Native American Health at the University of Arizona.

“The data we selected (for the report) reminded me about what was missing,” she said. “The data wasn’t giving us the whole picture — and some of these problems still exist.” Underreporting of Covid data in Native communities, for example, made it hard for tribal leaders to respond effectively to the pandemic, she said.

Joe said her trips to Washington to work on the report always stirred a lot of optimism. “There was hope when we all got together and talked, but when you went back to your home setting, you’d be overwhelmed,” she said. “Type 2 diabetes in kids, childhood obesity. Many of us saw the urgency and need in our own worlds.”

“I really like to think we made progress, but I’m always reminded that we haven’t — especially with the pandemic,” said Joe, who grew up in the Navajo Nation, which experienced a devastating death toll from Covid. “All the things that were hidden are now visible.”

Coming tomorrow: The nation hasn’t made much progress on ending health disparities. These leaders forged ahead anyway.

 This is part of a series of articles exploring racism in health and medicine that is funded by a grant from the Commonwealth Fund.