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Vanessa Northington Gamble
and Deborah Stone
excerpted from: Vanessa Northington Gamble and Deborah Stone,
U.S. Policy on Health Inequities: the Interplay of Politics and
Research, 31 Journal of Health Politics, Policy and Law 93- 122,
99-108 (February, 2006) (17 Footnotes)
For much of the twentieth century the color line in medicine was so
rigidly drawn that hospitals and medical institutions could, and
routinely did, exclude African Americans. The racially exclusionary
practices of hospitals often had tragic consequences, as the
November 1931 death of Juliette Derricotte, Dean of Women at Fisk
University, vividly demonstrates (Crisis 1932; Lerner 1972: 384-
396). It also illuminates the limits of individual actions in the
context of institutional restrictions. Miss Derricotte died after
she was refused hospital care following an automobile accident in
Dalton, Georgia. According to witnesses, she received medical
treatment from a white physician at the scene and later at his
office. According to witnesses, the physician provided good and
compassionate care, but because of racial discrimination he could
not admit her to the local hospital. Consequently she was moved to
the private home of a black woman who had no medical or nursing
training. Apparently the residence, which witnesses described as
filthy, was where black patients received medical care in the town.
Derricotte remained at the private home for several hours and died
after she was transferred fifty miles to the black ward of a
Chattanooga hospital. The National Association for the Advancement
of Colored People (NAACP) publicized the death in black and white
newspapers nationwide. By putting a human face on hospital
discrimination, the civil rights organization hoped to galvanize
support for efforts to desegregate hospitals. African Americans
believed that their exclusion from hospitals as patients and health
professionals played a major role in their poor health status.
Historically, progress in addressing racial disparities has resulted
from the interplay of research and political action. Indeed minority
community leaders sometimes deliberately transformed their knowledge
about disparities and injustices into scientific research projects
to gain recognition for their political claims. As the work of W. E.
B. DuBois demonstrates, research became a form of protest, as well
as a resource for future protest and political action.
In 1906 DuBois, a sociologist and civil rights activist, published
the monograph, The Health and Physique of the Negro American (DuBois
1906), one of a series of research studies published under the
auspices of Atlanta University, a historically black institution.
DuBois used data such as census reports, vital statistics, and
insurance company records to document the poor health status of
African Americans in comparison to white Americans. DuBois contended
that these disparities stemmed from social conditions and not from
inherent racial traits. "With improved sanitary conditions, improved
education, and better economic opportunities," he declared, "the
mortality of the race may and probably will steadily decrease until
it becomes normal" (ibid.: 73). One of the major objectives of The
Health and Physique of the Negro American was to refute the theories
of Frederick L. Hoffman, a statistician at Prudential Life
Insurance. In his influential 1896 treatise Race Traits and
Tendencies of the American Negro, Hoffman attributed the poor health
status of African Americans to inherent susceptibility and racial
inferiority.
The Health and Physique of the Negro American served as the basis
for the Eleventh Conference for the Study of Negro Problems. On May
29, 1906, scholars, health professionals, and activists gathered at
Atlanta University to review DuBois' findings. At the end of the
meeting they adopted several resolutions. They called for the
formation of local health leagues to provide information about
preventive medicine and urged existing health organizations to
institute programs to address the health care needs of African
Americans. The latter recommendation might have been developed to
remind white Americans that germs have no color line and that
self-interest mandated that they not neglect black health needs.
Conference attendees also reaffirmed DuBois' stance about the
importance of social factors in determining health. They passed a
resolution stating that they "did not find any adequate scientific
warrant for the assumption that the Negro race is inferior to other
races in physical build or vitality. The present differences in
mortality seem to be sufficiently explained by conditions of life" (DuBois
1906: 110). In their final resolution they emphasized the connection
between research and social reform. It stated, "The Conference above
all reiterates its well known attitude toward ... social problems:
the way to make conditions better is to study the conditions"
(ibid.).
The African American community also attempted to address health
inequities by creating its own institutions such as hospitals,
medical schools, and professional societies. They also initiated
self-help activities such as the National Negro Health Movement. The
origins of the movement can be traced to 1915 when the Virginia
affiliate of the National Negro Business League established a health
week to call attention to the high morbidity and mortality rates of
black Virginians and to develop programs to attack them. The league
had become interested in health issues because its members believed
that the poor health status of African Americans was a "source of
economic loss to the race and a hazard to the general welfare of the
state" (Moton n.d.). The goal of the health week was to teach
African Americans about the principles of public health and hygiene
to help them become stronger and more effective citizens. Its
activities included lectures in churches and schools and the
formation of brigades to clean neighborhoods.
The activities in Virginia attracted the attention of Booker T.
Washington, one of the most prominent black leaders of the late
nineteenth and early twentieth centuries. In 1915, Washington, the
principal of Tuskegee Institute and president of the National Negro
Business League, moved the program to Tuskegee to give it a national
focus. Washington (n.d., quoted in Smith, 1995: 38) saw the effort
as critical for the advancement of African Americans because
"without health ... it will be impossible for us to have permanent
success in business, in property getting, [and] in acquiring
education .... Without health and long life all else fails." In 1923
an official of the National Urban League, an organization that
promotes economic opportunity and social welfare for African
Americans, stated, "the Negro's struggle for health might be
considered an effort of the race to survive" (Jones 1923: 72).
Black Americans readily embraced health
week. Between 1915 and 1930, African Americans in thirty-two states
participated in health week activities. In 1935, 2,200 communities
from across the nation sent in reports of their health week
activities. In memory of Booker T. Washington, who died shortly
after the initiation of the national program, National Negro Health
Week was held during the first week of April--his birthday week.
Although many health care efforts were concentrated in this week,
the organizers of National Negro Health Week saw beyond this annual
event and worked to establish the improvement of black health as an
ongoing effort. They successfully worked to bring the problem of
black health to the attention of the federal government and
organizations such as the American Social Hygiene Association, the
American Red Cross, and the Rockefeller Foundation. According to
historian Susan L. Smith (1995: 34), "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."
In 1930 the United States Public Health Service (USPHS) assumed
operation of National Negro Health Week and it subsequently became a
year-round activity. The Tuskegee organizers welcomed this shift
because they saw it as a step toward placing black health care on
the nation's public health agenda. Two years later, the USPHS
established the Office of Negro Health Work under the direction of
Dr. Roscoe G. Brown, a black dentist. The creation of this office
represented the first time since the end of the Civil War that black
health care issues were institutionalized within a federal
bureaucracy. The office served as the center of the federal
government's black health efforts. Its activities included
coordinating health week, developing educational materials, and
publishing National Negro Health News, a quarterly journal on black
health issues.
The Office of Negro Health Work operated until 1950. Its demise
reflected major changes in American race relations--the rise of
integrationism as a strategy for black advancement and with it, the
rejection of separate programs and facilities for African Americans.
Physician-activist W. Montague Cobb contended that "the idea of a
special 'Negro Health Week' has become outmoded" because it
represented segregationism (Cobb 1950: 8). The federal government
decided to close the office because it was "in keeping with the
trend toward integration of all programs for the advancement of the
people in the fundamentals of health, education, and welfare" (Smith
1995: 78).
After World War II the campaign to desegregate medical facilities
and dismantle separate institutions for African Americans gained
momentum. Medical civil rights activists accurately maintained that
a segregated health care system led to inferior medical care for
black Americans. In addition, they charged that the
separate-but-never-equal facilities of the black medical ghetto
could never adequately meet the health and professional needs of
African Americans.
Armed with the precedent set by the 1954 Supreme Court decision
Brown v. Topeka Board of Education, which struck down segregation in
public education, the medical civil rights activists began a
judicial assault on hospital segregation. Simkins v. Moses H. Cone
Memorial Hospital proved to be the pivotal case. In February 1962,
black physicians, dentists, and patients from Greensboro, North
Carolina, brought suit to stop the racially discriminatory practices
at two voluntary hospitals that had received close to $3 million
under the Hill-Burton Act, a federal hospital construction program.
The plaintiffs in Simkins challenged the constitutionality of a
"separate-but-equal" clause in the legislation. Although the
district court ruled against them, the Court of Appeals found in
their favor in November 1963, and its decision stood because the
Supreme Court refused to hear the case on appeal (Beardsley 1987:
245-272; Halperin 1988: 59-63; Journal of the National Medical
Association 1962; Journal of the National Medical Association 1963;
Horty 1964; Hospitals 1964).
The Simkins decision represented a significant victory in the battle
against racial discrimination in health care. Its authority,
however, was limited to those hospitals that received Hill-Burton
funds. A 1964 federal court decision, Eaton v. Grubbs, broadened the
prohibitions against racial discrimination to include voluntary
hospitals that did not receive such funds (Halperin 1988; Modern
Hospital 1964; Hospitals 1964; Journal of the National Medical
Association 1957; Journal of the National Medical Association 1961).
The 1964 Civil Rights Act supplemented these judicial mandates and
prohibited racial discrimination in any programs that received
federal assistance. The 1965 passage of the Medicare and Medicaid
legislation made most hospitals potential recipients of federal
funds and thus obligated them to comply with federal civil rights
legislation (Parker 1964; Journal of the National Medical
Association 1965).
In March 1966, Reverend Dr. Martin Luther King, Jr., the civil
rights leader, went to Chicago to plan direct action against the
city's hospitals because of their racially discriminatory practices.
He hoped that his efforts would dramatize the health problems of
black Americans. "Of all forms of discrimination and inequalities,
injustice in health is the most shocking and inhuman," Dr. King
declared (Chicago-Sun Times 1966: 12). King's comments vividly
illustrate how African Americans throughout the twentieth century
saw health care inequities as inextricably linked to the struggle
for civil rights. Various segments of the black community--health
care professionals, politicians, activists, newspaper
reporters--called attention to the community's poor health status
and developed multipronged strategies to improve it, including
activism, self-help, research, and legal suits.
During the 1970s and 1980s it became increasingly clear that,
despite the significant impact of the civil rights movement in
securing access of minority Americans to the nation's medical
institutions, disparities continued to persist between the health of
white and minority Americans. In January 1984, Margaret Heckler,
President Ronald Reagan's secretary of health and human services
(1983-1985), sent Health, United States, 1983 to the U.S. Congress.
This annual report card on the health status of Americans documented
significant gains. But Heckler (U.S. DHHS 1985: ix) pointed out, it
also "signaled 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" (Heckler's emphasis). She noted that although
there had been 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" (ibid.: 185).
In response to this "national paradox," Heckler established the
Secretary's Task Force on Black and Minority Health to conduct a
comprehensive and coordinated study of these disparities (ibid.: 2).
The nineteen-member task force of senior scientists and officials of
the Department of Health and Human Services conducted its work over
the course of a year. Its activities included analyzing existing
morbidity and mortality data, examining the factors underlying these
disparities, and consulting with experts in minority health from
outside of the federal government.
The task force released its ten-volume report in October 1985. Its
most significant accomplishment was its extensive documentation of
the extent of the health disparities between the health status of
blacks, Native Americans, Hispanics, and Asian/Pacific Islanders
compared to those of whites. The task force decided that the
statistical technique of excess deaths best defined disparities in
mortality. It described excess deaths as the difference between the
number of deaths observed in the minority populations and the number
that would have been expected if the minority population had the
same age- and sex-specific death rates as the nonminority
population. The task force used the concept of excess death to
graphically illustrate the magnitude of racial and ethnic
disparities in America. It found that 60,000 excess deaths occurred
each year in minority populations--deaths that probably would not
have occurred had the persons been white. The task force identified
six causes of death--cancer, cardiovascular disease and stroke,
cirrhosis, diabetes, homicide and accidents, and infant
mortality--that together accounted for more than 80 percent of the
excess deaths observed in minority populations.
The task force recognized that the factors underlying the health
disparity between minority and white Americans are "complex and defy
simplistic solutions" (ibid.: 7). "Health status," it contended, "is
influenced by the interaction of physiological, cultural,
psychological, and societal factors that are poorly understood for
the general population and even less so for minorities" (ibid.). In
its report, the task force did not discuss these factors at great
length. Its primary goal was to accurately document the problem of
racial and ethnic disparities.
The task force made eight main recommendations to the secretary
(ibid.: 8). Strikingly, the recommendations focused entirely on
information strategies--improving education, research, data, and
communications among agencies--but were silent on the question of
politics and political will, as if knowledge deficiencies were the
only cause of disparities. Indeed, Dr. Edith Irby Jones, the
president of the National Medical Association, a black medical
society, criticized the report's emphasis on health education and
lifestyle changes. She argued that the Heckler report implied, "If
black people would only 'behave' their health problems would be
solved .... as black Americans, we know it is not as simple as all
that" (Jones 1985: 486).
The release of the Heckler report pushed minority health issues onto
the national research and health policy stage. In response to the
report, the Department of Health and Human Services swiftly
established in 1985 the Office of Minority Health (OMH). In January
1986, Dr. Otis Bowen, Heckler's successor, appointed Dr. Herbert
Nickens, a black psychiatrist, as the office's first director.
Thirty-five years after the demise of the Office of Negro Health
Work, the federal government once again had an office dedicated to
improving minority health. Its broadened mandate--minority health,
rather than black health--reflected the recognition of disparities
in other minority groups and the changing demography of the American
population. OMH was given responsibility for implementing the task
force recommendations, as well as planning, coordinating, and
monitoring activities across the U.S. Department of Health and Human
Services that relate to disease prevention, health promotion,
service delivery, and research concerning racial and ethnic
minorities. In 1990, five years after the establishment of the OMH,
the NIH created an Office of Research on Minority Health to
coordinate the development of NIH policies, goals, and objectives
related to minority research and research training programs. By
2004, thirty-five states and territories had established some kind
of office, commission, council, or advisory panel on minority
health. The Heckler report can be credited with stimulating the
formation of this infrastructure (McDonough et al. 2004: 11).
After the release of the Heckler report, research analyzing racial
and ethnic disparities in health status, quality of care, and access
proliferated, although the issue did not attract much political
attention and, indeed, it remained very much a research issue. In
1990, the American Medical Association--not known as a particularly
progressive organization--responded to the growing research on
racial and ethnic disparities in treatment. Its Council on Ethical
and Judicial Affairs released a report that called these disparities
"unjustifiable." It contended that patient characteristics such as
income, education, and cultural beliefs played probable roles in
these disparities. However, it did not let physicians off the hook.
It recognized that "disparities in treatment decisions may reflect
subconscious bias .... The health care system like all of society
has not eradicated this [racial] prejudice" (Council on Ethical and
Judicial Affairs 1990: 2346). Thus, the American Medical
Association, however gingerly, applied a civil rights frame to the
disparities issue.
In 1999, the New England Journal of Medicine addressed the issue of
physician bias head-on with an article from a team of researchers
led by Dr. Kevin A. Schulman (Schulman et al. 1999). For this study,
the researchers developed a standardized computer program to survey
primary care physicians' recommendations about chest pain. The
computer program included videotaped interviews with patients (white
males, white females, African American males, and African American
females) about the nature of their chest pain. Unbeknownst to the
physicians taking part in the study, the patients were actually
identically dressed actors reading from identical scripts. The
researchers had also standardized most aspects of the patients'
medical and social histories-- age, cardiac risk factors, health
insurance, and job. The only variables were the race and gender of
the "patients." The study found that African Americans and women
with chest pain had relative odds of referral for cardiac
catheterization that were 60 percent of the odds for whites and men.
African American women faced the greatest disparity--relative odds
that were 40 percent of those for white men. The researchers
attributed the disparate care to "subconscious perceptions rather
than deliberate actions or thoughts" on the part of physicians
(ibid.: 624).
Schulman's research design incorporated a variation of a traditional
civil rights strategy--the use of testers. Civil rights activists
have long used this strategy to determine whether the treatment
afforded to white and black people in the same situation varies. For
example, black and white testers with identical credit histories and
perhaps résumés are sent to rent an apartment, apply for a mortgage,
or purchase insurance. If blacks with the same characteristics as
whites are turned down while whites are accepted, it is likely that
race was the decisive factor. The tester strategy is a powerful
civil rights enforcement technique because it figuratively catches
people in the act of discriminating. The Schulman study combined
elements of political action and scientific research and essentially
brought a testing program to medicine.
The Schulman study received widespread media attention. Most major
newspapers covered it (Goldstein 1999; Wall Street Journal 1999;
Rubin 1999; New York Times 1999), and it was a feature story on
Nightline, a highly regarded television news program (ABC News
Nightline 1999). The study provoked strong responses because it told
a powerful story of discrimination at the hands of physicians.
Perhaps because of its wide media exposure, this study became a
lightning rod for discussions about racial discrimination and racial
and ethnic disparities in health care. Six months after the
publication of the Schulman study, an article in the New England
Journal of Medicine harshly criticized the study's methodology and
called its findings "overstated" (Schwartz, Woloshin, and Welch
1999: 279). But as Thomas Perez, the former director of the Office
of Civil Rights in the Department of Health and Human Services, has
noted, attempts to dismiss the Schulman study "miss the mark, and
ignore the wide body of research, both before and after the Schulman
study, suggesting that race continues to matter in health care, and
racial bias may contribute to racial and ethnic disparities in
health status" (Perez 2003: 633).
The Schulman study was released a year after Dr. David Satcher
assumed the positions of U.S. surgeon general and assistant
secretary of health. Satcher, an African American physician who had
dedicated his career to improving the health of minority and
underserved patients, praised the study on ABC's Good Morning
America (1999) as "the best that we have documenting subconscious
prejudice." During his tenure as the nation's top public health and
health policy adviser, Satcher once again pushed the issue of health
disparities onto the nation's health policy and research agenda. His
efforts led to the development of the Initiative to Eliminate Racial
and Ethnic Disparities in Health and the inclusion of the
elimination of health disparities as one of the two major objectives
of Healthy People 2010 (U.S. Department of Health and Human Services
1998).
In November 2000, President Bill Clinton signed the Minority Health
and Health Disparities Research and Education Act of 2000 (Public
Law 106-525). One of its major provisions was the elevation of the
NIH Office of Minority Health to the Center for Minority Health and
Health Disparities. This move was not without controversy (Healy and
Brainard 1999; Brainard 1999). Dr. Harold Varmus, then NIH director,
opposed the elevation because he believed that the creation of the
center would confine research on minority health to one center.
However, African American political and medical leaders believed
that the change in status would give the office more clout because,
as a center, it could award its own grants. They passionately
supported the change and gathered bipartisan support, including that
of Senator Bill Frist of Tennessee, to push the legislation. Frist,
currently Senate majority leader, is a cardiothoracic surgeon who
wields great influence on health policy issues. Frist agreed to
support the legislation after provisions were included that would
also cover poor white Americans. Thus the act was not just a
minority health bill, but one that also recognized health
disparities in white, economically disadvantaged Americans. Another
provision of the act directed the Agency for Health Care Research
and Quality, the agency in the federal government primarily
responsible for health quality and health services research, to
conduct and support research on health disparities. In the years
since the Heckler report, the federal government has expanded its
support of research to eliminate racial and ethnic disparities in
health, and the pace of research is accelerating. Although
disparities research has gained momentum in the United States,
questions still remain as to how to create political will to sustain
the issue and how to translate research into action.
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