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STRUGGLING TO ESCAPE POOR HEALTH: 120 Years of Health Disparities Reports

STRUGGLING TO ESCAPE POOR HEALTH: 120 Years of Health Disparities Reports

African-American and Other Minorities' Long Quest for Equal Treatment in Health Care

Documents of racial disparities in health care

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For 120 years, academic and government researchers have been documenting how African Americans and other minority patients routinely experience lower levels of access and worse outcomes throughout the U.S. health care system. Decade after decade, these reports have issued calls for change but disparities in care have persisted.

"Health disparities" is now a common buzzword of discussion and analysis throughout both the health services research field and the ongoing political debate around how U.S. health care should be organized and financed. But it wasn't always like that.

For most of the history of modern medicine, African Americans and other minority populations have been on the short end of the stick for access to health care as well as the quality of much of the care they did receive. And for most of that time, this difference in medical empathy and services for whites versus non-whites was not widely acknowledged as a problem. 

Today, the issue of health disparities is a core theme in our political debate, our health systems, and our academic research centers. It is the raison d'être for the University of Pennsylvania's Summer Undergraduate Minority Research Program (SUMR) program that is celebrating its 20th year as a pipeline designed to channel underrepresented minority students toward PhD and other degree programs related to a career in health services research. And for this year's incoming SUMR students, as well as readers in the world beyond who may be unfamiliar with how the issue of health disparities came to the fore, a brief review seems in order.

w.e.b. dubois head180

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W.E.B. DuBois

Penn black scholar
It actually all started here at Penn more than 120 years ago when faculty member W.E.B. DuBois set out to conduct the first sociological study of a black community in the United States. It became the historic 500-page, 1899 book, The Philadelphia Negro, and included the first-ever analysis of the health of that non-white community.

In an effort to anchor the historical arc of this section of his work, DuBois noted, "Reliable data as to the physical health of the Negro in slavery are entirely wanting; and yet, judging from the horrors of the middle passage, the decimation on the West Indian Plantation, and the bad sanitary condition of the Negro quarters on most Southern plantations, there must have been an immense death rate among slaves." 

As for the health trends of his own 1890s'era, DuBois wrote, "Broadly speaking, the Negroes as a class dwell in the most unhealthy parts of the city and in the worst houses of those parts... the influence of bad sanitation surroundings is strikingly illustrated in the enormous death rate of the Fifth Ward -- the worst Negro slum in the city." Statistics from Philadelphia City Health Reports show the death rate in that ward for whites was 25.67 per 1,000 while the death rate for blacks was 48.46 per 1,000, or 89% higher than whites.

The Philadelphia Negro book

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DuBois' study report

'Excessive infant mortality'
"When we turn to the statistics of death according to age," DuBois wrote, "we immediately see that the high death rate is caused by an excessive infant mortality, which ranks very high compared with other groups." His statistics show the death rate for children under five was 94 per 1,000 for whites and 171 per 1,000 for blacks, or 82% higher for blacks. His work was one of the earliest documented accounts of the social determinants of health.

"The most difficult social problem in the matter of Negro health," DuBois concluded, "is the peculiar attitude of the nation toward the well-being of the race. There have, for instance, been few other cases in the history of civilized peoples where human suffering has been viewed with such peculiar indifference."

Negro Health News from 1933

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Booker T. Washington created a national Negro Health campaign.

In 1915, Booker T. Washington, a leading African American educator, convened the "Conference on Improvement of Health Conditions Among Negroes" at Tuskegee, Alabama. He cited "startling facts" compiled for that year's annual national Negro Conference: "45 percent of all deaths among Negroes were preventable; there are 450,000 Negroes seriously ill all the time; the annual cost of this illness is 75 million dollars; that sickness and death cost Negroes annually 100 million dollars." (2019 equivalent = $1.9 billion)

Negro Health Week
With the aid of the U.S. Public Health Service, Washington launched Negro Health Week as an annual campaign designed to raise the national profile of the issue and serve as a source of community information about how to access medical care. But it did not succeed in lessening the overall disparities in access and quality of care available to African Americans.

In the 1950s and 60s, as the Civil Rights movement spread across the South, health care services became a high-profile issue for its participants in several ways. One was the pressing need to recruit physicians, nurses and other providers willing to brave the dangers of providing treatment to protestors injured in the growing wave of demonstrations against segregation. Another was an effort to make equitable health care access one of the major goals of the Civil Rights Movement itself.

In 1964, the Medical Committee for Human Rights (MCHR) was created by a group of doctors and nurses to formalize their activities as street medics for the protestors. But along with that, they also organized their own protests calling for the end of discrimination at hospitals and other medical practices throughout the South that had long declined to treat African Americans.

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The Medical Committee for Human Rights (MCHR) often joined Civil Rights marches under the name Medical Committee for Civil Rights. It was created by doctors and nurses focused on desegregating health care delivery facilities across the country.

Martin Luther King, Jr.
In 1966, the MCHR held its annual convention in Chicago and invited Civil Rights leader Martin Luther King, Jr., to be the keynote speaker. MCHR National Chairman John Holloman, MD, announced a program of lawsuits aimed at segregated hospitals across the entire state of Mississippi. He also pointed out, "there is scarcely a Northern hospital that does not discriminate against Negro patients either in commission or omission."

Speaking to the same audience, King called for a "direct action campaign" against Chicago hospital discrimination and noted that the African American infant mortality rate in Chicago's poverty-stricken Woodlawn area was "as bad as Mississippi's rate." He also called for federal government action to force doctors and hospitals to comply with the Civil Rights Act and desegregate their practices and admission policies. 

"We are concerned about the constant use of federal funds to support this most notorious expression of segregation," King told the audience. "Of all the forms of inequity, injustice in health is the most shocking and most inhumane because it often results in physical death."

Afterward, King remained in touch with MCHR, personally participated in one of its marches, and was in discussions with the Southern Christian Leadership Committee to explore ways the health care disparities issue could be elevated. But his assassination in 1968 set off events that pushed health care and other issues into the background.

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Lyndon B. Johnson's 1965 signing of the law creating Medicare created the need for new kinds of academic research, giving rise to today's health services research field.

Rise of health services research
What finally did succeed in getting the issue of health disparities on the nation's political radar was the new academic discipline of health services research that emerged in the 1960s. The first wave of pioneering "health economists," like the young Mark Pauly, PhD, who would later become a nationall renowned professor and health services researcher at Penn's Wharton School,  had a new vision. They began attracting other scientists and government and business leaders to the idea that health care had its own unique economic dynamics that could be studied in new ways. Interest in this concept was greatly accelerated by the 1965 launch of Medicare and Medicaid, two health insurance programs of unprecedented size, complexity and cost. The late 1960's creation of Penn's Leonard Davis Institute of Health Economics (LDI) -- the first academic center exclusively devoted to the study of how health care delivery is organized, funded, managed and quality controlled -- was a direct result of these developments.

Among other things, health services researchers were keen on identifying and studying trends in costs, health care behaviors, practices and outcomes that involved wide variation. Understanding the exact causes of such variations often suggested solutions for how to eliminate them. It didn't take long for these researchers to notice the often-dramatic differences in health care access and outcomes for different racial and ethnic groups.

Canadian study of population health

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The Canada study.

Groundbreaking Canadian report
In the opening years of the 1970s, the Canadian government's health services researchers established a new framework for cataloging and analyzing the health and health care deficiencies of that country's population. Adopting these new methods in a nationwide study, Canada's Department of National Health and Welfare in 1974 published A New Perspective on the Health of Canadians which became a landmark work of health services research.

Throughout the 1970s, the rapid emergence of ever more powerful computerized data collection and analysis capabilities also played a key role in what would become the in-depth documentation of racial and ethnic disparities in health care throughout the United States. But it didn't happen all at once.

In the late 1970s, informed by the latest health care data, the Carter administration's Secretary of Health, Education and Welfare, Joseph Califano, carried out a sweeping reorganization of the federal government's approach to public health issues. Among other things, he changed the name of the department to "Health and Human Services (HHS)," launched the first comprehensive anti-smoking campaign, and officially stopped government health services from characterizing homosexuality as a "mental disease or defect." And, copying the framework established by Canada, his department in 1979 produced the first national report on the health of the entire U.S. population. It was called Healthy People.

Healthy People 1979 study

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Healthy People, 1979

Buried deep within the report
This historic 1979 book-length document did not contain a section on disparities in health care. Its opening sentence was "The health of the American People has never been better." But buried deep within the dense narrative of its ten sections were brief snippets of fact that seemed to suggest that the opening sentence may have been less than precise. Some examples:

- Early deaths from stroke are common "in blacks who, between the ages of 25 and 64, have a stroke rate almost 2.5 times that of whites."

- In 1977 "a record low of 14 infant deaths per 1,000 live births was achieved... Yet, despite the progress... black infants are nearly twice as likely to die before their first birthday as white infants." The death rate in 1977 for black infants was 24 per 1,000 live births.

- "Women from certain minority groups are half as likely as white women to receive the minimum prenatal care recommended by the American College of Obstetrics and Gynecology."

- "Black American children ages one to 14 have a 30 percent higher mortality rate."

- "The high incidence of stroke deaths at younger ages among blacks is probably due in large measure to the increased prevalence and severity of hypertension which occurs in black Americans for reasons not yet clear."

Still, for whatever trends they may have chosen to downplay, it is clear that some of those involved in the actual research and writing of the report had strong feelings about what they were documenting. Toward the end they wrote:

'Deep social problems that destroy health'
"If we are to mount a successful public health revolution in the next generation, [we must] go far beyond the traditional health care community... there will, of course be controversy about welfare, income maintenance programs, food stamps and other efforts to alleviate poverty. But we simply cannot avoid the fact that we must deal effectively with deep social problems that destroy health."

So, for all it may not have done, the 1979 Healthy People report was the first high-level federal call to recognize the role that the social determinants of health play in public health and adjust polices, regulations and funding accordingly. While that did not happen, officially expressing the idea as a national need was at least a start.

Six years later, in 1985, the true breakthrough for the policy and research issue of health care disparities occurred. The driving force behind this historic event was former Republican Congresswoman Margaret Heckler. She was appointed in 1983 to head Ronald Reagan's Department of Health and Human Services and came into office telling reporters she would be a "catalyst for caring."

The landmark U.S. report
Shortly after taking office, Heckler organized the Task Force on Black and Minority Health. That effort was, according to the American Journal of Public Health, "the first convening of a group of health experts by the U.S. government to conduct a comprehensive study of racial and ethnic minority health and engage the nation in deliberate, thoughtful discussions about the poor health status and needs of racial and ethnic minority communities."

The Heckler report on Black & Minority Health, 1985

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The monumental 1985 Heckler report filled nine volumes and established a comprehensive picture of racial and ethnic health and health care disparities throughout the United States.

And what a group it was. More than 290 scientists, technicians and staffers from across federal government health agencies and dozens of universities compiled data on minority populations' health and healthcare. The Task Force commissioned 40 studies conducted by 54 academic scientists. When published in 1985, the Report of the Secretary's Task Force on Black & Minority Health's nine volumes took up as much shelf space as a set of old-fashioned phone books. The executive summary alone ran for 239 pages.

In her opening letter, Heckler said the report documented "a sad and significant fact: there was a continuing disparity in the burden of death and illness experienced by blacks and other minority Americans as compared with our nation's population as a whole."

'An affront both to our ideals'
"That disparity," she continued, "has existed since accurate federal record keeping began -- more than a generation ago (and is) an affront both to our ideals and to the ongoing genius of American medicine." 

The report detailed the wide range of health and health care areas where significant disparities exist for African Americans and other minorities versus whites, including a five-year difference in life expectancy and an infant mortality rate for blacks twice that of whites. It estimated 60,000 excess deaths occur among those minority populations annually.

In December of 1985, President Reagan abruptly removed Heckler from office and appointed her ambassador to Ireland at a reduced salary. The New York Times reported White House insiders "complained that Heckler had resisted making draconian budget cuts within the  department" and "lacked ideological commitment to the President's programs."

Critical mass in the 1990s
Nevertheless, as she spent the next three years in Ireland, Heckler's master work went forward to legitimatize health disparities as a major area for health services and policy research studies.  By the late 1990s, a critical mass had been reached in both the depth of published data documenting health disparities and the rising sense of political pressure that something needed to be done about it.

In 1997, former Penn Professor and Director of the Penn Medicine Division of General Internal Medicine John Eisenberg, MD, was appointed the new head of the federal government's highest health services research office. Congress was renaming the organization the "Agency for Healthcare Research and Quality" (AHRQ) and charging it with the new task of researching and publishing annual reports on the nature and levels of health and health disparities throughout the U.S. The goal was to analyze and evaluate 300 different health care process, outcome, and access measures across a wide variety of conditions and settings throughout the population.  The first of these annual National Health Care Disparity Reports concluded, "racial, ethnic and socioeconomic disparities are national problems that affect health care at all points in the process, at all sites of care, and for all medical conditions -- in fact, disparities are pervasive in our health care system."

First AHRQ Health Care Disparities Report

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The first annual AHRQ Disparities Report.

The new legislation -- the Healthcare Research and Quality Act -- also authorized news kinds of AHRQ grants aimed at the "shortages in the number of trained researchers who are addressing health care issues for the priority populations."

During Eisenberg's five-year tenure as AHRQ chief, his agency provided grant funding for more than 200 major academic research projects focused on disparities. AHRQ in this period also provided some of the start up funding for Penn's Summer Undergraduate Minority Research (SUMR) program.

Medical and research training for minorities
Simultaneously, the Clinton White House and Congress was hammering out what became a new law addressing the same issue -- The Minority Health and Health Care Disparities Act. The legislation's core goal was to "enhance biomedical and behavioral research on minority health and  health disparities, support medical training for minorities and others, and improve the study and collection of data regarding minorities."

Meanwhile, the Institute of Medicine (now the National Academy of Medicine) launched multiple in-depth investigations and analyses of the overall quality-related challenges faced by U.S. health care, including health disparities.

Crossing the Quality Chasm in health care

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"The quality of care should not differ because of race..."

In its landmark 2001 work on this subject, Crossing the Quality Chasm: A New Health System for the 21st Century, the IOM concluded "Fundamental changes are needed in the organization and delivery of health care in the United States... the quality of care should not differ because of such characteristics as gender, race, ethnicity, income, education, disability, sexual orientation or location of residence."

These kinds of findings from over a decade of intensive research informed the Clinton administration's successful efforts to pass the Minority Health and Health Disparities Research Act of 2000 that also created what is today's National Institute on Minority Health and Health Disparities. 

'Unequal Treatment'
In the same period, Congress directed the Institute of Medicine to separately conduct a study assessing the differences in the kinds and quality of health care available to racial and ethnic minorities as the new millennium dawned.

Unequal Treatment

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"...evidence that stereotyping, biases, and uncertainty on the part of health care providers can all contribute to unequal treatment."

Published in 2002, the final report of that IOM study committee vice chaired by Penn Professor Risa Lavizzo Mourey, MD, MBA, was entitled Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care.

The report's bottom line was not bright in terms of its conclusions about how the situation had or had not changed in the years since the 1985 Heckler Report.

The 2002 IOM committee wrote, "Racial and ethnic minorities tend to receive a lower quality of health care than non-minorities, even when access-related factors, such as patients' insurance status and income are controlled... the study committee found evidence that stereotyping, biases, and uncertainty on the part of health care providers can all contribute to unequal treatment... Minorities may experience a range of other barriers to accessing care, even when insured at the same levels as whites... Further, financial and institutional arrangements of health systems, as well as the legal, regulatory, and policy environment in which they operate, may have disparate and negative effects on minorities' ability to attain quality care."

AHRQ 2017 Disparities Report

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Latest federal report: Blacks experienced worse access to care for 52% of the measures analyzed.

Flash forward to the 15th and latest AHRQ annual health disparities report - the 2017 National Healthcare Quality and Disparities Report. It found that, "disparities persist, especially for poor and uninsured populations in all priority areas." It goes on to say, "Blacks experienced worse access to care compared with whites for 52% of the measures."

Health care disparities today
Today, according to the latest data from the Centers for Disease Control (CDC), the current U.S. Infant mortality rate for whites is 4.9 per 1,000 live births. But for African Americans, the rate is 11.4 per 1,000 live births, or 133% higher. The maternal mortality rate for white women is 12.4 deaths per 100,000 live births; for blacks, it's 40.0 deaths per 100,000 live births, or 223% higher.

The bottom line of 120 years of health care bottom lines in the United States is that the two most poignant measures of any population's overall health -- maternal and infant mortality rates -- are about as shameful in 2019 as they were in the 1890s when W.E.B. DuBois first began documenting how so many African Americans remain enslaved to poor health and health care.

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Hoag Levins is a former staff reporter and editor at newspapers and magazines in Philadelphia, Manhattan and Washington, D.C., and currently the Editor of Digital Publications at the University of Pennsylvania's Leonard Davis Institute of Health Economics (LDI).