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Vernellia R. Randall
Equal access to quality health care is a crucial issue facing the United States. For too long, too many Americans have been denied equal access to quality health care on the basis of race, ethnicity, and gender. Cultural incompetence of health care providers, socioeconomic inequities, disparate impact of facially neutral practices and policies, misunderstanding of civil rights laws, and intentional discrimination contribute to disparities in health status, access to health care services, participation in health research, and receipt of health care financing.
The need to focus specific attention on the racism inherent in the institutions and structures of health care is overwhelming. Minorities are sicker than White Americans; they are dying at a significantly higher rate. These are undisputed facts. There are many examples of disparities in health status between racial/ethnic groups and between men and women: infant mortality rates are 2� times higher for blacks, and 1� times higher for American Indians, than for Whites; the death rate for heart disease for blacks is higher than for Whites; individuals from racial and ethnic minority groups account for more than 50 percent of all AIDS cases although they only account for 25 percent of the U.S. population; the prevalence of diabetes is 70 percent higher among blacks and twice as high among Hispanics as among Whites; Asian Americans and Pacific Islanders have the highest rate of tuberculosis of any racial/ethnic group; cervical cancer is nearly five times more likely among Vietnamese American women than White women; women are less likely than men to receive life-saving drugs for heart attacks; more women than men require bypass surgery or suffer a heart attack after angioplasty.
Yet, despite these significant health care status disparities, many Americans have been denied equal access to quality health care on the basis of race, ethnicity, and gender. Cultural incompetence of health care providers, socioeconomic inequities, disparate impact of facially neutral practices and policies, misunderstanding of civil rights laws, and intentional discrimination contribute to disparities in health status, access to health care services, participation in health research, and receipt of health care financing.
Drs. Micahel Byrd and Linda Clayton lay out clear the long history of racism and medicine in their seminal work: An American Dilemma: A Medical History of African Americans and the Problem of Race, Beginnings to 1900". In their work, Drs. Byrd and Clayton clear show that the problem of minority health status and minority health care access is a part of a long continuum of racism and racial discrimination dating back almost 400 year. Since colonial times, the racial dilemma that affected America also distorted medical relationships and institutions. There are has been active assignment of racial minorities to underfunded, overcrowded, inferior, public health-care sector. Furthermore, medical leadership has helped to establish the slaveocracy, create the racial inferiority myths, build a segregated health subsystem, and maintain racial bias in the diagnosis and treatment of patients. Only after 350 years of active discrimination and neglect, were efforts made to admit minorities into the "mainstream" health system. However, these efforts were flawed and since 1975 minority health status has steadily eroded and continue to experience racial discrimination in access to health care and quality of health care received.
Yet, the current health disparity issues are not isolated health system problems. In fact, the current health disparity is the cumulative result of both past and current racism throughout the American culture. For instance, because of institutional racism, minorities have less education and fewer educational opportunities; minorities are disproportionately homeless and have significantly poorer housing options; and minorities disproportionately work in low pay, high health risk occupations (i.e., migrant farm workers, fast food workers, garment industry workers).
Compounding the racial discrimination experienced generally, is the institutional racism in health care that affects access to health care and the quality of health care received. Despite efforts to eliminate discrimination and reduce racial segregation over the past 30 years, there has been little change in the quality of or access to health care for many minorities. According to the US Commission on Civil Rights, "Failure to recognize and eliminate differences in health care delivery, financing, and research presents a discriminatory barrier that creates and perpetuates differences in health status." Racial discrimination in health care delivery, financing, and research continues to exist and racial barriers to quality health care manifests themselves in a number of ways including:
Lack of Economic Access to Health Care. Over 42 million Americans are uninsured with no economic access to health care. A disproportionate number of the uninsured are racial minorities.
Recent changes in the "safety net" has resulted in increased problems. Specifically, in 1996 welfare reform changed the structure of public assistance and, as a result, had a disparate impact on women and minorities. One of the direct effects of welfare reform has been a reduction in the use of medicaid by those who qualify, because of an unawareness of eligibility requirements, which has increased the number of uninsured. A second effect has been that the subsequent increased poverty among those in need of assistance has caused a worsening of health status and an increase in the need for health care services.
In fact, a disproportionate number of racial minorities have no insurance, are unemployed, are employed in jobs that do not provide health care insurance, disqualify for government assistance programs, or fail to participate because of administrative barriers. Gaps in health status, and the absence of relevant health information, are directly related to access to health care
Barriers to Hospitals and Health Care Institutions. The institutional/structural racism that exists in hospitals and health care institutions manifests itself in the (1) adoption, administration, and implementation of policies that restrict admission; (2) the closure, relocation or privatization of hospitals that primarily serve the minority community; and (3) the continued transfer of unwanted patients (known as "patient dumping") by hospitals and institutions. Such practices have a disproportionate effect on racial minorities banishing them to distinctly substandard institutions or to no care at all.
Barriers to Physicians and Other Providers. Areas that are heavily populated by minorities tend to be medically under-served Disproportionately few White physicians have their practices located in minority communities. Minority physicians are significantly more likely to practice in minority communities, making the education and training of minorities extremely important. Yet, minorities are seriously under represented in health care professions. The shortage of minority professionals affects not only access to health care but also input into the structure of the system. With so few minority health care professionals, the control of the health care system lies almost exclusively in White American hands. The result is an inadequate, if not ineffective and marginalized, voice on minority health care issues.
Racial Disparities in Medical Treatment. Differences in health status reflect, to a large degree, inequities in preventive care and treatment. For instance, African Americans are more likely to require health care services, but are less likely to receive them. In fact, racial disparity in treatment has been well documented in a number of studies, including studies done on AIDS, cardiology, cardiac surgery, kidney disease, organ transplantation, internal medicine, obstetrics, prescription drugs, treatment for mental illness, and hospital care. Differences also exist in the number of doctor�s office visits between whites and blacks, even when controlling for income, education, and insurance. Furthermore, researchers have concluded that doctors are less aggressive when treating minority patients. Thus, the most favored patient is "White, male between the ages of 25 to 44". In fact, at least one study indicated a combined affect of race and gender resulting in significantly different health care for African American women
Discriminatory Policies and Practices. Discriminatory policies and practices can take the form of medical redlining, excessive wait times, unequal access to emergency care, deposit requirements as a prerequisite to care, and lack of continuity of care, which all have a negative effect on the type of care received. Because discriminatory practices are often facially neutral, citing exact practices becomes a difficult task. There are many examples, however, of policies and practices that disproportionately affect racial and ethnic minorities, such as refusal to admit patients who do not have a physician with admitting privileges at that hospital, exclusion of medicaid patients from facilities, and failure to provide interpreters and translations of materials, to name a few." One significant example, is a federal Medicaid racially neutral policy which nonetheless results in fewer expenditures on minority populations for nursing home care even though they represent a larger portion of the Medicaid population and have more illness. It is the combination of over-representation and under-spending in Medicaid that exemplifies the kind of structural and institutional racial discrimination that persists in many areas of the health care system.
Lack of Language and Culturally Competent Care. In addition to recognizing the disparities in health status between White Americans and minority groups, we must recognize differences within groups as well. Ethnic and racial minority communities are comprised of diverse groups with diverse histories, languages, cultures, religions, beliefs, and traditions. This diversity is reflected in the health care they receive and the experiences they have with the health care industry. Without understanding and incorporating these differences, health care cannot be provided in a culturally competent manner. Culturally competent care is defined as care that is "sensitive to issues related to culture, race, gender, and sexual orientation." Cultural competency involves ensuring that all health care providers can function effectively in a culturally diverse setting; it involves understanding and respecting cultural differences. Nonetheless, there has been relatively little research done on the differences in accessing quality health care by racial/ethnic subgroups, and few data are available on many of these groups.
Linguistic barriers also affect the quality of health care services, particularly for Hispanics and Asian Americans." Furthermore, the failure to use bilingual, professionally and culturally competent, and ethnically matched staff in patient/client contact positions results in lack of access, miscommunication and mistreatment for limited proficiency in English. This failure includes not providing education or information at the appropriate literacy level. Furthermore, if attempts to pass "English only" laws are successful, there will be an acute and racially disproportionate impact on minorities.
Disparate Impact of the Intersection of Race and Gender. The unique experiences of women of color have been largely ignored by the health care system. These women share many of the problems experienced by minority groups, in general, and women, as a whole. However, race discrimination and sex discrimination often intersect to magnify the difficulties minority women face in gaining equal access to quality health care. In addition to barriers restricting access to health care for racial/ethnic minorities, there are barriers to care that predominantly affect minority women. There are also gender differences in medical use, provision of treatments, and inclusion in research. This is partly the result of different expectations of medical care between men and women and of gender bias of health care providers. Furthermore, the difficulty minoirty women face accessing adequate health care, and all its components, is not limited to illnesses that affect both male and female populations. Rather, there is evidence that minority women often find it difficult to access quality health care related to gender-specific illnesses such as breast cancer.
An additional symptom of gender bias in the health care system that can affect outcomes is the way in which minority women�s medical concerns are not taken as seriously as minority men�s and are often dismissed as the result of emotional distress or as a psychosomatic condition. Further, some minority women�s health issues, such as violence against women, have been largely ignored by the medical community, and seen primarily as a social issue, not necessarily a health issue. Part of the problem is that medical professions have historically lacked a female perspective, in much the same way that the minority perspective is missing, therefore giving little attention to minority women�s health concerns.
Inadequate inclusion in Health Care Research. Despite volumes of literature suggesting the importance of race, ethnicity, and culture in health, health care, and treatment, there is relatively little information available on the racial, ethnic, and genetic differences that affect the manifestations of certain illnesses and their treatments. Billions of dollars are spent each year on health research ($35 billion in 1995). However, a strikingly minute percentage of those funds are allocated to research on issues of particular importance to women and minorities, and to research by women and minority scientists (21.5 percent and .37 percent, respectively). In response to years of exclusion of minorities and women, several statutory requirements have been enacted to ensure that research protocols include a diverse population The health condition of women and minorities will continue to suffer until they are included in all types of health research.
Lack of data and standardized collection methods. Current data collection efforts fail to capture the diversity of racial and ethnic communities in the United States. Disaggregated information on subgroups within the five racial and ethnic categories is not collected systematically. Further, racial and ethnic classifications are often limited on surveys and other data collection instruments, and minorities often are misclassified on vital statistics records and other surveys and censuses. It is important to collect the most complete data on racial and ethnic minorities, and subpopulations, to fully understand the health status, of all individuals, as well as to recognize the barriers they face in obtaining quality health care. The lack of data on different minority populations (such as Asian Americans) makes it difficult to conduct research studies and comparative analyses. Furthermore, the lack of a uniform data collection method makes obtaining an accurate and specific description of race discrimination in health care difficult. The existing data collection does not allow for regularly collecting race data on provider and institutional behavior.
Rationing Through Managed Care. The health care financing system has been steadily moving to managed care as a means of rationing health care. Without proper oversight, oversight that does not currently exist, managed care will, over time, tend to place increasingly stringent requirements on providers. They may fail to develop more expensive but culturally appropriate treatment modalities, and they may refuse or minimize the expenditures necessary to develop adequate infrastructure for minority communities. The potential for discrimination, particularly racial/ethnic discrimination to occur in the context of managed care is significant and is recognized as such by OCR and leading commentators and advocates for civil rights in health care services, financing, and treatment. However, little has been to protect minorities from this risk of discrimination.
"The Office of Civil Rights (OCR) also has not sufficiently prepared its investigative staff to identify and confront instances of discrimination by managed care organization. Despite indications of discrimination prohibited under title VI, OCR has not yet developed policy guidance specifically addressing title VI compliance in the managed care context. OCR headquarters indicate that OCR has known about the potentially discriminatory activities of managed care organizations since 1995, yet the office has been loath to encourage or support the regional investigators in identifying cases.
Several managed care practices can have a disparate effect on minorities. For example, one of the most common ways in which MCOs discriminate against minorities is in their selection of providers. A physician or other type of provider that serves mainly poor minorities may not be included in a managed care network because the provider�s patients might be labeled "too costly." Further, some plans target suburban areas for enrollment while ignoring inner-city areas, a process known as selective marketing. In addition, some MCOs may be limiting the access of medicaid patients to the full array of providers by sending these patients provider lists that contain only providers that accept medicaid, resulting in "segregated" provider lists. Other methods MCOs have used to discriminate against medicaid patients are excluding sections of the inner city from the MCO���s service area; applying a stricter definition of "medical necessity," the standard used to determine whether a patient will receive a particular test or treatment; and longer waiting times for new-patient or urgent-care appointments.
Racial inequality in health care persists in the United States despite laws against racial discrimination in large part because the laws in the United States are inadequate for addressing issues of institutional racial discrimination. The US legal system has had particular difficulty addressing issues of racial discrimination that result from individuals acting on biases and stereotypes and institutions that implement policies and practices that have a racial impact. Furthermore, the legal system requires individuals to be aware that the provider or institution has discriminated against them and that they have been injured by the provider. Two conditions that are highly unlikely in racial discrimination in health care. Finally, the health care system, through managed care, has actually built in incentives which may encourage "unthinking" discrimination.
"It might be that civil rights laws often go unenforced; it might be that current inequities spring from past prejudice and long standing economic differences that are not entirely reachable by law; or it might be that the law sometimes fails to reflect, and consequently fails to correct, the barriers faced by people of color." Derrick Bell
In the case of health care discrimination, the laws do not address the current barriers faced by minorities; and the executive branch, the legislatures and the courts are singularly reluctant to hold health care institutions and providers responsible for institutional racism.
In the area of health care, the United States has failed to meet its obligation under the article 2(1)(a), article 2(1)(c) , article 2(1)(d) and article 5(e)(iv) of the Convention on the Elimination of Racial Discrimination (CERD).
Article 2(1)(a).
Under Article 2(1)a, the United States has failed to "ensure that all public authorities and public institutions, national and local, shall act in conformity" with its obligation under Article 2(1)a.. Throught out its 1999 report to the President and Congress, the United States Commission on Civil Rights found significant weaknesses in the government�s enforcement efforts. Specifically, the commission noted that:
"The deficiencies in the [government�s] enforcement efforts. . . largely are the consequences of [a] fundamental failure to recognize the tremendous importance of its mission and to embrace fully the opportunity it has to eliminate disparities and discrimination in the health care system. Although [the government through the ] Office of Civil Right (OCR) has attempted to identify noncompliance with the Nation�s civil rights laws over the years, it has failed to understand that all of its efforts have been merely reactive and in no way have they remedied the pervasive problems within the [health care] system. [The government�s] failure to address these deeper, systemic problems is part of a larger deficiency . . . . a seeming inability to assert its authority within the health care system. As a result of the myopic perspective. . . the [government] appears unable to systematically plan and implement the kind of . . . "redevelopment" policy that it so clearly needs.
Through its 1999 study, the Commission on Civil Rights found significant weaknesses in the Office for Civil Rights� enforcement efforts. In particular, the Commission noted the government�s failure to implement many of the recommendations indicated by the Commission in its report on Title VI enforcement issued in 1996.
Despite some focus on minorities� health generally the government has failed to enforce civil rights laws vigorously and appropriately. The failure of the government to be proactively involved in health care issues or initiatives has resulted in the continuance of policies and practices that, in many instances, are either discriminatory or have a disparate impact on minorities and women.
Thus, there remain disparities in access to health care and in health care research, and unequal distribution of health care financing in the United States as a result of the US failure to meet its obligation under Article 2(1)(a).
Article 2(1)(c)
Under Article 2(1)(c), the United States has failed to meet its obligation. While the United States has undertaken extensive measures to review national laws and regulation which have the effect of creating or perpetuating racial discrimination, it has failed to make necessary revisions and modification in the law as recommend by the US Commission on Civil Rights. As noted by the Commission:
"In the United States today, there remain tremendous racial and gender disparities in access to quality health care services and health care financing, as well as in the benefits of medical research. Many of these disparities continue to plague the Nation�s health care system because the [government] . . . has failed to enforce the crucial nondiscrimination provisions of the Federal civil rights laws with which it is entrusted. The . ... enforcement operation is lacking in virtually every key area. . . . Most significantly, . . .[the government] generally has failed to undertake proactive efforts such as issuing appropriate regulations and policy guidance, allocating adequate resources for onsite systemic compliance reviews, and initiating enforcement proceedings when necessary.
The United States while undertaking extensive measures to review national effect of creating or perpetuating racial discrimination, have failed to "amend, rescind or nullify any laws and regulations" that have such effects. There has been little or no judicial activity in reviewing and shaping anti-discrimination law in health care. The government�s report fail to identify this lack of oversight. The United States despite taking five years to submit a report under its obligation have failed to review state and local laws and regulations.
Article 2(1)(d)
Under Article 2(1)(d), the United States has failed to meets its obligation to "bring to an end, by all appropriate means, including legislation" racial discrimination in health care. Although Congress has enacted civil rights laws designed to address specific rights, such as equal opportunity in employment, education, and housing, it has not given health care the same status. . . .Unequal access to health care is a nationwide problem that primarily affects women and people of color. According to the Commission on Civil Rights, the US oversight agency:
. . .for 35 years, [the government through] HHS and its predecessor agency, the Department of Health, Education, and Welfare (HEW), have condoned policies and practices resulting in discrimination against minorities and women in health care. In many ways, segregation, disparate treatment, and racism continue to infect the Nation�s health care system. [the government] . . .has pursued a policy of excellence in health care for white Americans by investing in programs and scientific research that discriminate against women and minorities. [The government]. . . essentially has condoned the exclusion of women and minorities from health care services, financing, and research by implementing an inadequate civil rights program and ignoring critical recommendations concerning its civil rights enforcement program. The Commission, the HHS Office of Inspector General, and the HHS Civil Rights Review Team have offered many recommendations for improving civil rights enforcement . . . . However, failure to implement these recommendations has resulted in failure of the Federal Government to meet its goals of ensuring nondiscrimination and equal access to health care for minorities and women."
Article 5(e)(iv)
Under Article 5(e)(iv), the United States has failed to "prohibit and to eliminate racial discrimination in all its forms and to guarantee the right of everyone, without distinction as to race, colour, or national or ethnic origin, [including] the right to public health, medical care, social security and social services." Such failure has been noted by the U.S. Commission on Civil Rights:
"Over the past 35 years the U.S. Commission on Civil Rights has been monitoring health care access for minorities and women, focusing primarily on the important role civil rights enforcement efforts can play in providing equal access to quality health care. Although there have been some improvements in accessing health care over the last three decades, the timid and ineffectual enforcement efforts of the [government through the] Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS) have fostered, rather than combated, the discrimination that continues to infect the Nation�s health care system. This is evident in the segregation, disparate treatment, and racism experienced by African Americans, Hispanic Americans, Native Americans, Asian Americans and Pacific Islanders, and members of other minority groups, as well as in the persistent barriers to quality health care that women continue to confront."
According to US Commission on Civil Rights, there is substantial evidence that discrimination in health care delivery, financing, and research continues to exist. Such evidence suggests that Federal laws designed to address inequality in health care have not been adequately enforced by Federal agencies . Specifically, the Commission noted that Health and Human Service�s inability to enforce civil rights laws and the Office of Civil Right�s isolation from the rest of the agency, as well as the civil rights community, have resulted in a failure to remove the historical barriers to access to quality health care for minorities, which, in turn, has perpetuated these barriers.
For nearly 20 years, from 1980 to 1999, the government has neglected its civil rights enforcement responsibilities to an almost unprecedented degree. Neglect of its civil rights enforcement responsibilities has been well documented. The consistently weak record has resulted, in part, from the lack of commitment to civil rights enforcement in the United States. According to the Commission on Civil Rights, the government�s steadfast refusal to address concerns about the quality of its efforts indicates a fundamentally limited view of the role civil rights enforcement can and should play in the health care industry, a view that is deeply ingrained within the culture of the Department of Health and Human Services (HHS). "What makes this disregard of recommendations for vigorous civil rights enforcement efforts particularly shameful is that HHS provides Federal assistance to medical programs and facilities that save lives every day." While the activities of agencies charged with protecting the rights to equality of opportunity in education and employment are matters of tremendous importance, the failure to conduct strong civil rights enforcement in health care literally can mean the difference between life and death.
However, the responsibility for this shameful record does not lie with HHS alone. The rest of the Federal Government, namely Congress and the President, has failed to offer the oversight, support, and assistance to civil rights enforcement activities that HHS so desperately needs.
Congress has not conducted an oversight hearing on OCR�s civil rights enforcement activities since 1987. Congress also has drastically reduced the agency�s annual appropriation to a point where it is extremely difficult for the agency to perform its responsibilities effectively. While the President has worked with HHS to implement minority health initiatives, none of these efforts contains a strong civil rights enforcement component or attempts to develop the key role that OCR should be playing in these efforts." The commission notes that this lack of civil rights enforcement is "particularly ineffective when compared with some of the more sophisticated civil rights enforcement programs the Commission has evaluated."
Finally, the Commission on Civil Rights notes that this lack of enforcement is of particular concern "because many new forms of discrimination against minorities have emerged as the Nation has moved from "fee-for-service" medicine to managed care. Without appropriate . . . [civil rights enforcement]. . neither recipients or beneficiaries of Federal funding, nor OCR investigative staff can develop a clear understanding of what constitutes discrimination by managed care and other health care organizations"
"Business Necessity" is being read as justifiable discrimination. " The Committee's use of the term "unjustifiable disparate impact" indicates its view that the Convention reaches only those race-neutral practices that both create statistically significant racial disparities and are unnecessary, i.e., unjustifiable".
Critique of US Representation
As indicated in the US Report on CERD, the Federal Government has made attempts to ensure equal access to health care through a number of statutes which were enacted to fight racial discrimination. However, the report fails to admit that the effort of the United States in ensuring equal access to quality health care has not only been ineffective and inefficent, but also has perpeuated racial discrimination.
. . . the Department of Health and Human Services (HHS) has faced several deficiencies, including shortage of resources and funding, which have hampered its ability to enforce civil rights laws and ensure nondiscrimination in the health care context. The result is the perpetuation of severe disparities in health status and access to health care services between minorities and nonminorities and women and men"
Although Congress has enacted civil rights laws designed to address specific rights, such as equal opportunity in employment, education, and housing, it has not given health care the same status. As a consequence, discrimination in health care is uncorrected.
