II. Overview of Health Disparities
Daryll C. Dykes, Health Injustice and Justice in Health: The Role of Law and Public Policy in Generating, Perpetuating, and Responding to Racial and Ethnic Health Disparities Before and after the Affordable Care Act, 41 William Mitchell Law Review 1129-1285 (2015) (493 Footnotes)
A. Definition of “Health Disparities”
In the broadest sense of the term, “health inequality” refers to any difference or lack of similarity in health or health care that exists between populations. Many health disparities result from fundamental and immutable differences among populations. For example, cystic fibrosis is most prevalent among people of European heritage, Tay-Sachs disease is most prevalent in Ashkenazi Jews, hereditary hemochromatosis is most prevalent in people of Celtic descent, and sickle-cell anemia is most prevalent in *1134 populations with sub-Saharan African, Latin American, Indian, and Saudi Arabian or Mediterranean ancestry. Like genes, age and sex also matter; however, “their significance lies not in their essence, but in their interrelation with the other components of health.”
However, other health disparities exist without an underlying biologic basis, and certain health care disparities exist without underlying differences in access-related factors, clinical needs, or patient preferences. Accordingly, the U.S. Department of Health and Human Services (HHS) defines a health disparity as “a particular type of health difference that is closely linked with social, economic, and/or environmental disadvantage.” Although the disadvantages referred to in this definition often are tied to race or ethnicity, health disparities also affect broad segments of the American population along lines of age; gender; sexual orientation or gender identity; cognitive, sensory, or physical disability; religion; socioeconomic status; incarceration; mental health; geographic location; or “other characteristics historically linked to discrimination or exclusion.” Health care disparity refers to “differences in the quality of health care that are not due to access-related factors or clinical needs, preferences, and appropriateness of interventions. These differences would include the role of bias, discrimination, and stereotyping at the individual (provider and patient), institutional, and health-system levels.” Health equity, on the other hand, is the “attainment of the highest level of health for all people.” According to HHS, achieving health equity “requires valuing everyone equally with focused and ongoing societal efforts to address avoidable inequalities, historical and contemporary injustices, and the elimination of health and health care disparities.”
*1135B. The History of Health Disparities
1. A Century of Recognition, Research, and Resolve Regarding Health Disparities
In the United States, attention to race-based health disparities began around the turn of the twentieth century. Established in 1895 when black physicians were refused membership in the American Medical Association, the National Medical Association (NMA) was formed to promote medical care for all people and to combat the inadequacies of the segregated American health care system. In addition to organizing its own hospitals and training black physicians, the NMA also studied tuberculosis, hookworm, pellagra, and other diseases disproportionately contracted by minorities through the appointment of special commissions.
One year after the NMA was established, Prudential Life Insurance statistician Frederick L. Hoffman published a report entitled Race Traits and Tendencies of the American Negro. Although Hoffman is credited with significant contributions to the fields of statistics and public health, his foundational work on health disparities would ultimately prove to be a troubling and highly influential factor in perpetuating unequal treatment of blacks in the American health care and insurance systems. Consuming two full issues of the Journal of the American Economic Association, Hoffman's treatise employed statistics, eugenic theory, observation, and speculation to conclude that the poor health status of blacks was attributable to inherent racial inferiority. “It is not in the conditions of life,” Hoffman concluded, “but in the race traits and tendencies that we find the causes of excessive mortality.”
*1136 Although Hoffman's work was heralded as genius, it did not go unchallenged. In his 1906 monograph entitled The Health and Physique of the Negro American, prominent black scholar W. E. B. DuBois used census reports, vital statistics, and insurance company records to refute Hoffman's work, concluding that “[i]f the population were divided as to social and economic condition[,] the matter of race would be almost entirely eliminated.” DuBois concluded that the mortality of the race would steadily improve with “improved sanitary condition, improved education, and better economic opportunities.” Although DuBois discredited Hoffman's conclusions on the basis of the earlier researcher's “unscientific use of the statistical method,” Hoffman's theories prevailed for over three decades.
Inspired by business firms, fraternal societies, and community organizations, the first organized efforts to improve the health of black communities began in Virginia in the early 1900s as annual initiatives to provide health education and to clean up homes, lots, and fields throughout the state. It was not long before the medical profession, including many members of the NMA, took notice and began to contribute to the effort. In 1912, Alabama's Tuskegee Institute held the first Annual Clinic where physicians from around the country assembled at Tuskegee's John A. Andrews Hospital to provide free care to patients, including those suffering with malaria, typhoid fever, small pox, and tuberculosis. Two years later, recognizing their broader potential value, prominent black educator and leader Dr. Booker T. Washington initiated the national expansion of the Virginia campaigns and established leadership of the efforts at the Tuskegee Institute. Between 1915 and 1930, Washington's National Health Improvement Week garnered widespread support among blacks and evolved into *1137 National Negro Health Week, and ultimately, the National Negro Health Movement. According to historian Susan L. Smith,
Black health activists turned National Negro Health Week into a vehicle for social welfare organizing and political activity in a period when the vast majority of African Americans were without formal political and economic power. Much like white social reformers of the early twentieth century, black reformers turned to government and charity organizations to ensure the permanency of their volunteer efforts. Unlike their white counterparts, however, black activists found only limited government and private resources available for health promotion in their communities.
In 1932, the U.S. Public Health Service (USPHS) established the Office of Negro Health Work (ONHW) as the first federal office devoted to black health care issues. Staffed by a secretary and Dr. Roscoe C. Brown, a black dentist, “[t]he main purpose of [ONHW] was health education,” rather than a source of health policy or surveillance. ONHW coordinated the efforts of the growing National Negro Health Movement, provided promotional materials, and served as an important source of information through National Negro News, its quarterly journal on black health issues.
Although ONHW made significant strides in improving health for many blacks, health disparities clearly persisted through the 1930s and 1940s. In 1944, Nobel-laureate economist Gunnar Myrdal noted:
Medical knowledge has advanced beyond medical practice, and medical practice has advanced far beyond most people's opportunity to take advantage of it. A reduction in these lags would have tremendous *1138 consequences for the well-being and happiness of every person in the nation. Of special significance to the Negroes is the lag of opportunity for some people to obtain the advantage of medical practices available to other people. Area for area, class for class, Negroes cannot get the same advantages in the way of prevention and cure of disease that whites can. There is discrimination against the Negro in the availability to him of medical facilities.
This discrimination, according to Myrdal, “increases Negro sickness and death both directly and indirectly and manifests itself both consciously and unconsciously.” Myrdal's recognition of the disproportionate shortage of medical facilities available to blacks was consistent with a 1938 survey by the Council on Medical Education and Hospitals of the American Medical Association. Despite the then accepted standard that there should be 4.5 general hospital beds per 1000 of population, the survey found 0.7 beds available for blacks and 2.4 for whites. As discussed below, although Congress responded with the 1946 passage of the Hospital Survey and Construction Act, government action failed to correct the discrepancy and, in some ways, exacerbated the problem of discrimination and segregation in health care.
Due to the beliefs of certain civil rights leaders like physician-activist Dr. W. Montague Cobb, as well as the growing broader interest in racial integration in health, education, and welfare, the ONHW was dismantled in 1950. During the 1950s and 1960s, the nation was preoccupied with a civil rights movement that encompassed broad social, political, and economic objectives. Health equity was a high-priority, albeit relatively less visible, goal compared to issues such as disparities in housing, education, and public accommodations. During this time, the Reverend Dr. Martin Luther King, Jr. declared, “Of all the forms of inequality, *1139 injustice in health care is the most shocking and inhumane.” Reflecting on this era, “Dr. W. Montague Cobb, then editor of the Journal of the NMA, wrote, ‘With the deadline for social justice long overdue, Negroes in the medical and allied professions threw themselves into the battle to close the citizenship gap in the health field.”’
Such an effort was the Medical Committee for Human Rights (MCHR). Organized in Mississippi during the so-called “Freedom Summer of 1964,” MCHR was a group of physicians, dentists, nurses, and other health professionals, originally organized to provide health services to southern civil rights workers who, due to a combination of discrimination, lack of available services, and the physical danger they faced, were often unable to get adequate care from local services. Building on the significant success of its early efforts, MCHR expanded its program to include the direct provision of health care to poor black communities throughout the South, with now internationally renowned Harvard Medical School psychiatrist Dr. Alvin Poussaint as its first southern field director. Despite significant contributions to medical access for blacks (demonstrated reductions in black infant mortality and increased awareness of health disparities), MCHR was finally dissolved in the early 1980s as many of its members assumed leadership roles in state and national organizations and the group developed more progressive interests beyond health disparities.
The social, legislative, and judicial milestones reached during the civil rights era notwithstanding, race-based health disparities remained a significant problem for the nation. In 1985, Margaret *1140 Heckler, President Ronald Reagan's Secretary of HHS, concluded that “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.” The disparity had persisted, Heckler wrote, “ever since accurate federal record keeping began--more than a generation ago. And although our health charts do itemize steady gains in the health status of minority Americans, the stubborn disparity remained--an affront both to our ideals and to the ongoing genius of American medicine.” As a result of this “national paradox of phenomenal scientific achievement and steady improvement in overall health status,” in the face of “persistent, significant health inequities,” Heckler established the Secretary's Task Force on Black and Minority Health.
The report of the Task Force, commonly known as the Heckler Report, was self-characterized as “a landmark effort in analyzing and synthesizing the present state of knowledge of the major factors that contribute to the health status of Blacks, Hispanics, Asian/Pacific Islanders, and Native Americans.” It concluded that blacks experienced nearly 60,000 “excess deaths” each year from 1979 to 1981. Collectively, approximately sixty percent of the excess deaths were attributable to heart disease and stroke, cancer, infant mortality, cirrhosis, and diabetes. The remaining forty percent were divided between homicide and accidents, and all other causes.
Recognizing “that the factors responsible for the health disparit[ies] are complex and defy simplistic solutions,” the task force developed recommendations to
incorporate minority health initiatives into existing [HHS] program areas in order to address health *1141 conditions amenable to immediate improvement, press for greater public and private involvement in a common effort to eliminate the health disparity, resolve unanswered questions through a concerted program of research and data collection, and seek new strategies to ameliorate health inequities between minorities and nonminorities.
In 1985, to implement the task force's recommendations, HHS established the Office of Minority Health (HHS-OMH)--an action that would formally house efforts to eliminate health disparities within a department of the federal government for the first time since the Office of Negro Health Work closed three and a half decades earlier. Unlike the earlier office, HHS-OMH was charged with improving all “minority health, rather than [just] black health [to] reflect[] the recognition of [health] disparities in other minority groups and the changing demograph[ics] of the [nation].” Also credited in large part to the Heckler Report, by 2004, thirty-five states and territories had established some variant of an office, commission, council, or advisory panel on minority health.
The remainder of the 1980s and 1990s brought significant growth in academic, government, and public interests in racial and ethnic disparities in health and health care. On the national scene, studies of racial and ethnic health and health care disparities continued to proliferate and were characterized by “increasingly sophisticated control or adjustment for such confounding variables as health insurance status, income and education, severity or stage of disease, comorbidity, and hospital type and resources.” The problem of racial and ethnic disparities in health and health care had become viewed as an important component of American *1142 health, and as a “particularly troubling component of the problems of race and ethnicity in the larger society.”
Much of the momentum during the later 1980s and early 1990s can be attributed to the pioneering efforts of Dr. Louis W. Sullivan-- the seventeenth Secretary of HHS and second African American to hold that office. Dr. Sullivan had been the founding dean and director of the Medical Education Program at the historically black Morehouse College in 1975, and led the program to full accreditation as a four-year medical school in April 1985. Tapped by President George H. W. Bush for the cabinet position, Dr. Sullivan arrived in Washington in 1989 and began an aggressive campaign of efforts to improve the health and behavior of all Americans, including tireless efforts to eliminate racial and ethnic health disparities.
Before Dr. Sullivan arrived in office, Assistant HHS Secretary and Surgeon General Julius Richmond had issued a document titled Healthy People, which was “a survey of where the nation stood on a broad array of health issues, what each meant, and what could be done to improve behaviors and outcomes.” Although Dr. Sullivan believed the document made “great sense,” he felt that it had not achieved its full potential because it had not been publicized and disseminated aggressively. In a follow-up to the report, Dr. Sullivan launched Healthy People 2000 in September 1990. This was a strategy for improving the health of Americans through 319 individual objectives in twenty-two priority areas of (1) health promotion, (2) health protection, (3) preventive services, (4) surveillance and data systems, and (5) the development of an infrastructure to track the objectives and to identify and evaluate emerging public health issues at the national, *1143 state, and local levels. Ultimately, it was Dr. Sullivan's goal to achieve the highest public profile possible for Healthy People 2000, in order to raise the issues, influence people and organizations, and show how people could affect their own health by the end of the century. Notably, together with the goals to increase the span of healthy life and achieve preventive services for all for Americans, Healthy People 2000 unambiguously identified the reduction of health disparities among Americans as one of the nation's three primary health goals of the decade.
Furthermore, recognizing that women and minorities were dramatically underrepresented in clinical research, Dr. Sullivan focused significant attention on the National Institutes of Health, where he helped increase the annual operating budget from$8 billion in 1989 to $13 billion in 1993. He established the Office of Research on Women's Health at the National Institutes of Health (NIH) and brought in Dr. Vivian Pinn--a respected black pathologist-- to run it. Similarly, Dr. Sullivan established the NIH Office of Research on Minority Health (ORMH) and named Dr. John Ruffin as its first director.
Dr. Sullivan's other significant accomplishments as Secretary include the inauguration of a $100 million minority male health and injury prevention initiative and implementation of greater gender and ethnic diversity in senior positions of HHS, including the appointment of the first female director of the National Institutes of Health, the first female and first Hispanic Surgeon General of the U.S. Public Health Service, the first African- *1144 American Commissioner of the Social Security Administration, and the first African-American Administrator of the Health Care Financing Administration.
Following Dr. Sullivan's tenure at HHS, another prominent African-American leader in academic medicine would enter the public life and make significant contributions to the elimination of health disparities. Largely credited with saving Meharry Medical College from financial ruin and closure in the 1980s (at which time the college had educated nearly half of the black physicians and dentists in this country), Dr. David Satcher led the Centers for Disease Control and Prevention from 1993 to 1998, until President Bill Clinton appointed him as the sixteenth U.S. Surgeon General and first African American to hold the post. Dr. Satcher also served as Assistant Secretary of HHS from February 1998 to January 2001, making him only the second person in history to simultaneously serve in both capacities. Among his myriad contributions to the elimination of health disparities, Dr. Satcher published reports on: tobacco use among U.S. racial and ethnic minority groups; culture, race and ethnicity issues in mental health; and bone health and osteoporosis, including the special considerations of the uninsured and underinsured, the poor, minority populations, men, nursing home residents, frail elderly *1145 persons, and rural or other remote populations. In what might be considered one of his most significant accomplishments while in office, Dr. Satcher spearheaded, along with Dr. Sullivan, the launch of Healthy People 2010. Specifically, the Healthy People 2000 goal to reduce health disparities was strengthened in Healthy People 2010, with the focus on eliminating health disparities clearly identified as one of two overarching goals.
2. The Changing National Perspective on Health Disparities After “Unequal Treatment”
By 1999, prompted by the growing concern regarding health disparities in the United States, Congress requested an Institute of Medicine (IOM) study to: (1) “[a]ssess the extent of racial and ethnic differences in healthcare that [were] not otherwise attributable to known factors such as access to care (e.g., ability to *1146 pay or insurance coverage)”; (2) assess “potential sources of racial and ethnic disparities in healthcare, including the role of bias, discrimination, and stereotyping at the individual . . ., institutional, and health system levels”; and (3) “[p]rovide recommendations regarding interventions to eliminate healthcare disparities.” The IOM responded to the congressional mandate with coordinated health disparities research and the publication of the landmark 2002 report entitled, Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare. Treatment concluded that, despite a century of broad-based inquiry and action, “evidence of racial and ethnic disparities in health care is, with few exceptions, remarkably consistent across a range of illnesses and healthcare services.” Disparities persist, according to the report, “even when access-related factors, such as patients' insurance status and income, are controlled,” and many sources, including “health care systems, health care providers, patients and utilization managers,” contribute to such inequities. Additionally, Unequal Treatment provided an equally broad series of recommendations to facilitate the elimination of health disparities. These recommendations included: collecting and reporting health care access and utilization data by patients' race/ethnicity, encouraging the use of evidence-based guidelines and quality improvement, supporting the use of language interpretation services in the clinical setting, increasing awareness of racial/ethnic disparities in health care, increasing the proportion of underrepresented minorities in the health care workforce, integrating cross-cultural education into the training of all health care professionals, and conducting further research to identify sources of disparities and promising interventions. Finally, Unequal Treatment catalyzed unprecedented interest, research, and action to further understand and address racial and ethnic disparities in health care.
