Race, Health Care and the Law 
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Racial Disparities and Civil Rights

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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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Professor Vernellia R. Randall
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The University of Dayton School of Law
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Email: randall@udayton.edu

 

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 03/10/2010

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