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Marianne Engelman Lado
excerpted from: Marianne Engelman Lado, Unfinished
Agenda: the Need for Civil Rights Litigation to Address Race
Discrimination and Inequalities in Health Care Delivery, 6 Texas Forum on
Civil Liberties and Civil Rights 1- 45 (Summer 2001)(218 Footnotes
Omitted)
II. Racial Disparities in the Distribution of Health Services and the
Need for Civil Rights Enforcement (pp. 4-16)
In the early 1990s, civil rights advocates, health care researchers,
medical professionals, and representatives from an array of government
agencies, community based organizations, and law schools gathered to
explore access to health care as a civil rights issue and to chart a
course for litigation and activism. The conference was co-sponsored by the
NAACP Legal Defense & Educational Fund, Inc. (LDF), the School of
Hygiene and Public Health at The Johns Hopkins University, and the
Institute on Health Care for the Poor and Underserved at Meharry Medical
College. In the years since the conference, discussion of national health
care reform has come and gone, and the growth of managed care has
dramatically transformed the delivery of health care services. Yet the
racial and ethnic disparities in health status and health care access that
gave rise to the assembly still remain.
As a post-conference report to the Henry J. Kaiser Family Foundation (LDF
Report) indicates, generations of African Americans, particularly the
poor, have been exposed to greater health risks than Whites and have been
more likely to contract preventable illness, to suffer from chronic and
often disabling conditions, and to die prematurely. Indeed, disparities in
both exposure to health hazards and access to health care continue to
threaten not only quality of life, but the very possibility of longevity.
Consider the following:
1. African American infants are twice as likely as Caucasian infants to
die before reaching their first birthday.
2. African American women have a life expectancy five years shorter
than Caucasian women.
3. The life expectancy for African American men is seven years shorter
than for Caucasian men.
Indeed, as the New York Times reported in 1998, "[W]hen it comes
to health, studies show a stubborn, daunting, and in some respects,
growing disparity between Black and White Americans." In particular,
despite the economic gains of the 1990s, African Americans continue to
receive less and lower quality health care than Whites.
A. Discrimination in the Delivery of Care
There is no organized civil rights bar to attack discrimination in the
provision of health care. Moreover, unlike in the employment and housing
contexts, there is no independent federal statutory framework governing
civil rights enforcement in health care access, aside from Title VI of the
Civil Rights Act of 1964. However, racial disparities in access to health
care are attributable to historic patterns of exclusion, mistreatment and
discrimination. As historian Rosemary Stevens writes, throughout the
twentieth century "[H]ospitals, as social institutions, carried (and
enhanced) prevailing assumptions about social class and racial divisions
in the United States . . . ." Stevens also noted that historically
African Americans in need of medical care were denied services entirely,
were placed in segregated wards providing inferior care in the least
desirable facilities, or were forced to seek out alternative forms of
treatment. Until 1963, federal policy sanctioned segregation in federally
assisted and federally administered facilities.
There can be no doubt that the disparity in health status previously
mentioned reflects, in no small part, the widespread continuation of
discriminatory and segregatory practices in the provision of medical
services. Indeed, recent studies have made clear that economic factors
such as income and insurance status are important, but cannot fully
explain racial disparities in the delivery of health care services. For
example, research on health care utilization by the population insured
through the Medicare program indicates that older black men on Medicare
receive heart bypass surgery about one-fourth as often as similarly
situated Whites. In the rural Southeast, white Medicare patients are seven
times more likely to have the surgery as Blacks. Referencing his study on
major coronary procedures in veterans hospitals, Dr. John Ayanian noted,
"[T]hat race can affect medical care in ways that are not simply
related to socioeconomic status, because racial differences occurred in a
system where care is free and black and white patients are more similar in
socioeconomic status than the general population." Other research
found that V.A. Medical Centers provided African American veterans with
acute myocardial infarction with "substantially fewer cardiac
procedures than whites." In the mid- 1990s, the American Medical
Association (AMA) formally acknowledged the continuation of racially-based
disparities in care. The Report of the AMA Board of Trustees noted that
despite the many advances in medicine and health care during the past
quarter of a century, "racial problems are chronic."
These "racial problems" come in many guises. As Jane Perkins,
of the National Health Law Program, wrote, "The most obvious
difference between majority and minority health care is that people of
color are generally served by a delivery system separate from that serving
whites." Physicians, who have historically maintained the discretion
to admit patients into their practice, may choose not to treat individuals
based on their race or ethnicity or to cap the number of African Americans
or low-income people of color without repercussion. Medical professionals
may also feel some pressure to limit the number of African Americans and
Latinos in their practice because hospitals may deny staff privileges to
physicians who are perceived as bringing a different, and allegedly less
desirable, group of patients into the facility. In a similar vein, a
recent study reported in the Journal of the American Medical Association
investigated the problems physicians may be encountering with managed care
organizations (MCOs). The study found that the physicians in managed care
"had significantly lower percentages of uninsured and non-white
patients in their practices." These findings suggest that physicians
with a greater number of uninsured or non-white patients may be less
likely to be offered opportunities to participate in managed care
networks. Indeed African American medical professionals, who on average
care for a significantly higher number of black patients than their white
counterparts, report racial discrimination in all aspects of the practice
of medicine, including peer review, obtaining staff privileges, hospital
staff promotions, malpractice suits, private insurance oversight, and the
referral practices of white colleagues.
As health care consumers, African Americans must navigate financing and
delivery systems in which the obstacles to care are many and
discrimination is pervasive. For many African Americans and other
minorities, racial and ethnic barriers are compounded by economic
disadvantage. African Americans and Latinos are more likely to be
uninsured than Whites, and significantly less likely to be covered by
private, employment-related insurance. However, independent of insurance,
non-white children still have less access to care than their white
counterparts. Similarly, poor women of color are particularly burdened by
restrictions on reproductive health services because of the limited
availability of services, the likelihood of scheduling difficulties at
overcrowded facilities, and greater barriers of distance and mobility.
African Americans are also at a disadvantage in the competition to
receive organ transplants. While working as a staff attorney at LDF, the
author of this article received calls from families seeking representation
in their effort to pressure the National Bone Marrow Transplant network to
increase outreach to minority communities, an effort that might make real
the statutory promise that minorities will have a comparable opportunity
for bone marrow transplants. Approximately 75% of white patients in need
of a bone marrow transplant are able to find a donor whose antigens match
appropriately through the National Bone Marrow Donor Program (NMDP). By
contrast, fewer than 20% of African American patients can find a donor
through the program. The gap is due, in part, to the underrepresentation
of African Americans in the NMDP's donor pool, the composition of which is
largely a function of outreach efforts.
Complaints were also received by the author that ambulance corps and
physicians still engage in practices such as racial "steering"
(sending different categories of patients to different locations for
care), and "cherry picking" (selecting certain patients for
referral to premier facilities). And providers continue to
"dump" unwanted patients by refusing treatment or transferring
patients elsewhere. Two recent studies have found that "the need for
long-term care is higher among Blacks and Latinos than Whites, but their
use of some long-term care services is substantially lower." The
under-representation of African Americans in nursing homes is demonstrably
related to discrimination on the bases of race, socioeconomic status, and
insurance, or a combination thereof.
Perhaps most troubling is that, as a result of a myriad of decisions
made by individuals and organizations over decades, many African American
communities are simply underserved, left out of the mainstream of medicine
and unable to take advantage of pharmaceutical and technological advances.
Alan Sagar, Assistant Professor at Brandeis University, identified this
fundamental problem--the dismantling and lack of medical
infrastructure--as far back as 1980. In his testimony before Congress
about urban hospital closures and relocations, Sagar reported that
minority neighborhoods are likely to be associated with the absence or
departure of physicians in private practice, which, in turn, undermines
the viability of public inner-city facilities. In addition, the conversion
of public and non-profit facilities to for-profit status has also
diminished the accessibility of care by poor communities. As noted in a
recent study, the result of this process is that "[c]ommunities with
high proportions of Black and Hispanic residents [are] four times as
likely as others to have a shortage of physicians, regardless of community
income."
B. The Profound Consequences of Failing to Provide Adequate Health
Services to Low Income African Americans
Statistics reflecting disparities in health care access fail to capture
the profound alienation that many African Americans feel from the
predominantly white health care industry as a result of generations of
mistreatment, exclusion and virtually unchecked discrimination along the
color line. Recent revelations that researchers were performing
experiments with psychiatric drugs on African American and Latino boys
were of little surprise to those in medically underserved areas who have
no basis for trust in the medical profession or health care industry. As
Laurie Kaye Abraham wrote in her book on the barriers to access faced by a
low-income African American family in Chicago, "A fair number of
Blacks are convinced, not without reason, that doctors do not always have
their best interests at heart. To a degree that confounds many Whites,
they worry that they could become unwitting subjects in dangerous human
experiments." Indeed, there is an extensive record of medical
experimentation on African Americans, from the Tuskegee Syphilis Study to
the use of prisoners for pharmaceutical testing. The record includes an
investigation of whether Dilantin would increase oxygen flow to children
delivered by cesarean section, which was conducted by an anesthesiologist
who never obtained consent from the 240 pregnant women who participated in
the study.
Medical experimentation may be the most flagrant cause of alienation,
but pervasive mistreatment combined with systemic discrimination over
generations have reinforced a deep distrust. Stories of segregation and
abuse at the hands of white medical professionals are now woven into the
fabric of African American lore. Two generations ago, anthropologist and
author Zora Neale Hurston wrote of her experience with a white specialist
in Brooklyn, New York. Hurston's appointment had been made over the
telephone, and the receptionist was "obviously embarrassed" when
she arrived. Hurston was ultimately taken to and examined in a closet with
soiled towels and uniforms rather than the examination room. In like
manner, Maya Angelou has recounted her ordeals at the hands of white
physicians in the South. Angelou describes being taken by her Grandmother
across the railroad tracks to a white dentist. Ignoring her pain entirely,
the dentist refused to treat Angelou's toothache, saying "my policy
is I don't treat colored people." When Angelou's grandmother pleaded
with him, he replied, "My policy is I'd rather stick my hand in a
dog's mouth than in a nigger's."
Deep suspicion continues today, exacerbated by individual incidents of
mistreatment as well as structural inequalities. At a meeting the author
attended at a public housing complex in New York in the 1990s, for
example, tenants discussed the poor treatment they had received at area
hospitals. Residents spoke of racial and economic segregation at
not-for-profit hospitals. Privately insured patients, a disproportionate
number of whom were White, were placed in one wing of the hospital, while
uninsured patients and Medicaid recipients were placed in another. This
occurred despite the fact that New York State's Medicaid program fully
funded the hospital for inpatient care. Indeed, subsequent investigations
at New York's Mt. Sinai Hospital revealed similar patterns, as well as the
assignment of privately insured African Americans to the ward usually
reserved for the poor. In a series of articles that made public the
discriminatory practices at Mt. Sinai, Annette Fuentes reported that the
wards were not only separate, but also unequal. Karen Gagnon, a privately
insured African American patient who had toured the private floor but was
assigned to a room on the ward usually reserved for the poor, compared the
two: "You'd think it was a different hospital." Fuentes also
quoted a nurse at Mt. Sinai who acknowledged the disparities in services:
"They [the patients on the predominantly minority ward] don't get the
same education and treatment, like information on infant care and breast
feeding. . . ." Indeed, the public housing tenants agreed that what
they called the "private" " and "public" wings
contrasted sharply, that they were "different worlds." In the
public ward, they had seen feces in open areas, their beds were not
changed as often or often enough, and they failed to receive adequate and
timely attention from the nursing staff.
Although public hospitals serve a disproportionate number of poor
people of color in the United States, New York public housing tenants at
the aforementioned meeting also expressed suspicion of services available
at area public hospitals. More than one recounted how he or she had heard
of someone who had been "displaced" there for a few days. A
number explained that they refused to go to the public hospital because
"they kill people there." Although overcrowded clinics and busy
emergency rooms attest to the fact that many individuals nonetheless
present themselves at public hospitals, the high level of alienation
associated with these comments merits attention. Such distrust has
ramifications for the timeliness of care seeking, the success of public
information campaigns and preventative medicine, and compliance with
prescribed courses of treatment.
C. Litigation to Complement Other Areas of a Civil Rights Agenda
Although the way in which access to health care specifically intersects
with other issues is beyond the scope of this paper, it is worth noting
how expertise on health issues and an active health docket complement
other areas of a civil rights agenda.
Since the publication of a 1987 study showing that race, even more than
socioeconomic status, correlates with the location of hazardous waste
facilities, communities across the country have mobilized around issues of
environmental justice. The environmental justice movement has grown in
response to concerns that poor people of color are disproportionately
exposed to health hazards and that both the placement of such hazards and
the failure to clean up toxic sites in low-income communities of color
follow predictable patterns, representing various forms of
"environmental racism." Litigation and advocacy aiming to
achieve equity in the provision of health services complements an
environmental justice docket. Indeed, to some degree they overlap.
Consider, for example, litigation to challenge the failure of states to
require lead blood tests in compliance with federal requirements that all
children on Medicaid receive early and periodic screening, diagnosis and
treatment (EPSDT). Even where the health and environmental dockets
diverge, lawyers and other staff may find themselves comparing notes on
legal strategies (for example, whether to rely on rights under Title VI of
the Civil Rights Act of 1964, 42 U.S.C. 2000d, and its implementing
regulations or whether to pursue other procedural and substantive claims
under state and federal law); sharing factual data; sharing information on
experts (for example, regarding community level demographics and the
incidence of chronic conditions such as childhood asthma); and discussing
approaches to working with the many community groups seeking
representation.
Potential also exists for productive linkage with the area of criminal
justice. Conceptually, the deprivation of health care can be seen as one
of the conditions, along with the failure to provide educational
opportunities and decent, safe housing, that leads along a continuum to
the criminalization of many low-income African American children.
Moreover, any inquiry by the health docket into discriminatory referral
and treatment patterns in mental health, an area ripe for investigation,
could benefit from the information and expertise acquired during years of
capital punishment litigation. Finally, given both the proportion of young
African American men involved in the criminal justice system and the
tragic dimensions of the HIV/AIDS epidemic within that population,
activists in those two areas could consider the possibility of a joint
exploration into issues such as prison health.
Finally, problems of access to health care also intersect with the
availability of employment opportunities as well as job conditions. Most
significantly, whether an individual is able to obtain health insurance
and the scope of the benefits package provided is dependent, in part, on
his or her employment. As LDF argued on behalf of itself and the National
Black Women's Health Project in Int'l Union v. Johnson Controls Inc.,
historic patterns of job discrimination and poor levels of training and
education combined to concentrate African American workers in unhealthy
industries and the most hazardous jobs. Moreover, policies that allow
employers to restrict opportunities for women, rather than requiring a
clean and safe work environment for all workers, have particularly adverse
effects on African Americans. Thus, health and employment efforts serve to
reinforce one another.
Introduction
Racial Disparities and Civil Rights
Historical Perspectives and Civil Rights Enforcement
Litigation and Advocacy
Conclusion
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