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The Civil Rights Dimension of Racial and Ethnic Disparities in Health Status Thomas E. Perez, J.D., M.P.P.1 Clinic Director and Assistant Professor of Law University of Maryland School of Law It is hard to talk about race. Discussions about race in general and racial discrimination in particular are potentially unnerving, which ex- plains in large measure why such conversations are so few and far be- tween. In the health care context, discussions about race and racial dis- crimination are particularly rare. But this is slowly beginning to change, and two primary forces have triggered the change. First, the Initiative to Eliminate Racial and Ethnic Disparities in Health has focused considerable attention on improving the health status of people of color in the United States. The disparities initia- tive was launched in 1998 by former President Clinton and Secretary of Health and Human Services Donna Shalala. Under this bipartisan initia- tive, President Clinton and Secretary Shalala committed the nation to the ambitious yet attainable goal of eliminating racial and ethnic disparities in six areas of health status while continuing the progress that has been made in improving the overall health of people in America. The six focus areas of this initiative are: (1) infant mortality; (2) cancer screening and management; (3) cardiovascular disease; (4) diabetes; (5) HIV infection/ AIDS, and (6) immunizations. This Initiative enjoys the support of current HHS Secretary Tommy Thompson. 1 Assistant Professor of Law and Director, Clinical Law Programs, University of Maryland School of Law. Former Director, Office for Civil Rights, U.S. Department of Health and Human Services. The author wishes to thank Kathryn A. Ellis, former principal deputy director of the Office for Civil Rights, and Juliet Choi, research assistant and law student, for their input and assistance. 626

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627 CIVIL RIGHTS DIMENSION The second factor that has triggered a discussion about the role of discrimination in health care is the dramatic increase in immigrant popu- lations in urban and rural settings across the United States. These major demographic shifts have forced health care providers, government offi- cials, and communities to address the unique challenges confronting im- migrants. The growing dialogue surrounding the need for a culturally competent health profession reflects the recognition of the changing face of America. The disparities initiative and the rapid expansion of immigrant popu- lations across America have focused the attention of health professionals, politicians, and policy makers on the critical question of why it is that communities of color and immigrant communities are lagging behind the rest of America in so many critical measures of health status. Racial disparities in many areas of health status are well-documented, disturbing, and preventable.2 In order to eliminate health disparities, it is important first to understand the root causes. Until recently, the role of discrimination was largely ignored. Instead, disparities have been de- fined in other terms: economic—poor people are more likely to have diffi- culty accessing quality health care; geographic—those who live on the wrong side of the tracks and near the toxic waste dump are more likely to encounter health problems; and sometimes genetic—certain races or ethnicities may have a genetic predisposition to certain illnesses. Finally, disparities frequently have also been defined in terms of education or be- havioral issues—if we could simply teach better habits. All of these explanations are undoubtedly true depending on the con- text, with some factors perhaps playing a larger role than others. How- ever, another factor is rarely discussed—discrimination. This paper ad- dresses the role that discrimination plays in explaining health disparities, and outlines a host of civil rights interventions that can be put into place to address these disparities. This paper is divided into four parts. Part one addresses what specifically is meant by “discrimination” in the legal sense. Discrimination is an often misunderstood concept, and this section seeks to demystify and destigmatize discrimination by ex- plaining what it means legally in the health care context. This section 2 Dr. Jack Geiger has performed perhaps the most comprehensive study to date tracking down the literature on racial and ethnic disparities in health care. Geiger, HJ. 2001. Racial and Ethnic Disparities in Diagnosis and Treatment: A Review of the Evidence and Consider- ation of Causes, Institute of Medicine, Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care. Examples of studies documenting disparities include: Bach PB et al. 1999. Racial Differences in the Treatment of Early Stage Lung Cancer. New England Journal of Medicine, 341:1198-205; Ayanian, JZ et al. 1999. The Effect of Patients’ Preferences on Racial Differences in Access to Renal Transplantation. New England Journal of Medicine, 341:1661-69.

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628 UNEQUAL TREATMENT introduces Title VI of the Civil Rights Act of 1964, one of the principal tools used in addressing discrimination in the health care context. Parts two and three explore whether discrimination is actually alive and well in the health care setting. Part two outlines research regarding the potential role of discrimination in explaining health disparities. This section is not intended as an exhaustive review of the literature, but it does outline noteworthy studies that have triggered further discussion about the role of discrimination in explaining disparities. Part three discusses actual discrimination cases in the health care con- text. There are some respected experts who believe that discrimination is not a significant problem in health care.3 Regrettably, the evidence belies these assertions, and there is a substantial body of cases involving dis- crimination in a variety of health care settings, and this section discusses these cases. A generation ago, discrimination in health care was quite similar to discrimination in other settings. That is, hospitals, nursing homes, and other health care facilities, like schools, were segregated and needed to be integrated. Thus, early discrimination cases in the health care context focused on issues such as equal access to medical facilities. Today’s civil rights challenges in health care generally are more subtle, but no less compelling. The six categories of cases discussed in section three are (1) intentional discrimination cases; (2) access to health care for people with limited English skills; (3) medical redlining in a variety of settings, including managed care and home health care; (4) other man- aged care issues, including physician participation; (5) discrimination in access to treatment; and (6) other unique challenges confronting immi- grant population in addition to language access. Parts two and three lay out the case that discrimination is a root cause of health disparities, and underscore that a comprehensive strategy to eliminate disparities must incorporate a strong civil rights component. Part four contains a series of recommendations for eliminating disparities that focus on the civil rights dimension of the disparities challenge. These recommendations include (1) promoting the collection of data related to race, ethnicity and primary language by federal, state and local govern- ments and health care facilities; (2) enhancing the federal infrastructure for enforcing civil rights laws in the health care context; (3) expanding the capacity of private organizations to enforce civil rights laws in the health settings; (4) implementing a comprehensive language access agenda; (5) amending federal law to re-establish that private parties can enforce all provisions of the Title VI regulations; and (6) reviewing federal law and 3 See, for example, Havighurst, C. and O’Neill, J. September 6, 2001. Invited Presentation at panel discussion, “Race, the Medical Marketplace, and Health Care Disparities,” National Academies of Sciences.

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629 CIVIL RIGHTS DIMENSION removing barriers to participation for legal immigrants in critical pro- grams, such as Medicaid and the State Children’s Health Insurance Pro- gram (SCHIP). Effective data collection is a lynchpin of any comprehensive strategy to eliminate health disparities. In order to fully appreciate the value of collecting data on race, ethnicity and language of preference in health care, it is useful to draw upon civil rights experiences in non-health care set- tings. Part four explains how advocates and government officials have used federal laws pertaining to data collection in the home mortgage and the policing context to address the issues of mortgage lending discrimina- tion and racial profiling, respectively. Policymakers concerned about data collection in health care can learn a number of valuable lessons from these experiences. Implementing all of the recommendations outlined in part four will assist in reducing, but will not eliminate racial and ethnic disparities in health. Indeed, eliminating racial and ethnic disparities in health will re- quire a comprehensive strategy that reflects a keen understanding of the multi-faceted nature of the challenge. The principal aim of this paper is to give policymakers, providers, advocates and other stakeholders a better understanding of the civil rights dimension of the challenge, as well as a set of suggestions on how to address these civil rights concerns. PART ONE: DEFINING DISCRIMINATION Discrimination can be a scary term, as it frequently conjures up im- ages of nefarious actors engaging in conscious acts of bigotry designed to deny people of color an important benefit or opportunity. While isolated incidents of such discrimination regrettably exist, discrimination in today’s health care marketplace is much more subtle, but no less serious in its effect. Understanding what discrimination means under federal civil rights laws is critical to understanding precisely how civil rights laws can be used to combat racial and ethnic disparities in health. Title VI of the Civil Rights Act of 1964 (Title VI) and its accompanying regulations are the primary tools used to attack discrimination in health care. Title VI prohibits discrimination based on race, color, or national origin, in any program or activity that receives federal financial assis- tance.4 Virtually every health care provider receives some form of federal 4 Title VI provides that “[n]o person in the United States shall, on the ground of race, color, or national origin, be excluded from participation in, be denied the benefits of, or be sub- jected to discrimination under any program or activity receiving Federal financial assis- tance” 42 U.S.C. § 2000d.

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630 UNEQUAL TREATMENT financial assistance, so it is not difficult as a practical matter to fall within the ambit of Title VI. The language of Title VI itself addresses intentional discrimination. However, the regulations issued pursuant to Title VI make clear that Title VI itself reaches far beyond intentional discrimination. The regulations prohibit health care providers from using “criteria or methods of admin- istration which have the effect of subjecting individuals to discrimination on the basis of their race, color, or national origin, or have the effect of defeating or substantially impairing accomplishment of the objectives of the program [with] respect [to] individuals of a particular race, color or national origin.”5 Thus, there are two types of discrimination under Title VI: (1) intentional discrimination; and (2) policies or practices that may be neutral on their face but have the effect of discriminating on the basis of race, color, or national origin (the “disparate impact” theory or “effects” test). Title VI applies to a range of discrimination concerns, including ac- cess to health services, redlining, and physician staff privileges and par- ticipation in managed care. Until earlier this year, private litigants were permitted to sue to enforce Title VI regulations prohibiting acts with dis- criminatory effects. However, the United States Supreme Court in Alex- ander v. Sandoval ruled that there is no private right of action under the Title VI regulations (121 S.Ct. 1511 [2001]). The case itself involved a class of non-English speaking residents of Alabama, who alleged that the state’s policy of offering the driver’s license exam only in English amounted to national origin discrimination under the aforementioned “effects” provi- sion of the Title VI regulation. The Court of Appeals for the Eleventh Circuit agreed, but the Supreme Court ruled that private parties lacked the authority to file a lawsuit to enforce the effects provision of the Title VI regulation. Sandoval represents a significant setback for civil rights advocates, who had pursued a steady diet of civil rights cases in health care using the disparate impact theory under the Title VI regulation. Private plaintiffs must now establish that the conduct in question amounts to intentional discrimination under Title VI. It is important to note, however, that Sandoval only applies to private parties, and has no effect on the federal government’s ability to pursue civil rights cases using the effects test un- der the Title VI regulation. The authority of agencies such as the Office for Civil Rights (OCR) at the Department of Health and Human Services (HHS) remains unchanged. There are two ways to invoke the protections of Title VI: an aggrieved person can (1) file a written complaint with OCR and/or (2) file a lawsuit 5 45 C.F.R. 80.3(b)(2).

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631 CIVIL RIGHTS DIMENSION under Title VI.6 It is not necessary to first file an administrative complaint in order to file a lawsuit. OCR is the federal agency responsible for enforc- ing Title VI in the health and human service context, and has been doing so for over 35 years. OCR will investigate that complaint by, among other means, reviewing the pertinent practices and policies of the hospital or provider that is the subject of the complaint, the circumstances under which the possible noncompliance occurred, and other factors relevant to a determination as to whether the hospital or other recipient has failed to comply with Title VI.7 OCR may also, on its own, review the practices of a recipient of federal funds to determine whether they are complying with Title VI. A complaint is not necessary.8 If OCR finds noncompliance, it will first seek voluntary compliance by the recipient. OCR’s ultimate sanction is to terminate federal funding, either in an administrative proceeding or by referring the case to the De- partment of Justice for litigation. The advantages of filing an OCR com- plaint are that: (1) it does not require a lawyer; (2) a finding of discrimina- tion by a federal agency can be very powerful; (3) the involvement of OCR frequently results in a resolution of the case, sparing the expense and un- certainty of protracted litigation; and (4) OCR can investigate both allega- tions of intentional discrimination under Title VI and disparate impact under the Title VI regulations, whereas private litigants can only sue un- der an intentional discrimination theory. Title VI is not the only civil rights tool that is employed to address discrimination in health care. For instance, the Hill-Burton Act proscribes discrimination in health care settings, and provides a statutory hook to attack racial discrimination in health care. However, relatively few health care providers fall within the jurisdiction of the Hill-Burton Act, whereas virtually every actor in the health care system receives federal financial assistance, and is therefore covered by Title VI. Title VII of the Civil Rights Act of 1964, and 42 U.S.C. 1981 are anti-discrimination provisions that can be used by employees or other providers who feel that they have been victims of discrimination.9 For instance, physicians of color who have been 6 45 C.F.R. 80.7(b). 7 45 C.F.R. 80.7(c). 8 45 C.F.R. 80.7(a). 9 Title VII provides, in part, that it is unlawful for an employer to “fail or refuse to hire or to discharge any individual, or otherwise to discriminate against any individual with re- spect to his compensation, terms, conditions or privileges of employment, because of such individual’s race, color, religion, sex, or national origin” 42 U.S.C. 2000e-2(a)(1). Like Title VI, Title VII prohibits intentional discrimination as well as disparate impact discrimination. Section 1981 prohibits racial discrimination in the making and enforcement of contracts, and applies to public and private contracting.

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632 UNEQUAL TREATMENT terminated from managed care networks have sought redress under Title VII and/or section 1981. These statutes provide legal framework for addressing the role of dis- crimination in health care. PART TWO: IS DISCRIMINATION ONE OF THE ROOT CAUSES OF DISPARITIES: WHAT DOES THE RESEARCH SAY? Research Regarding the Potential Role of Bias in Physician Decision-Making There is a growing body of research addressing whether discrimina- tion is one of the root causes of racial and ethnic disparities in health. The 1999 Schulman study generated the most attention.10 In this study, re- searchers addressed whether the patient’s race or gender affected the physician’s decision to recommend cardiac catheterization. The study involved simulated patients (white males, white females, African-Ameri- can males, African-American females) who had identical backgrounds in all respects except race and gender, identical risk factors and symptoms. The researchers controlled for other factors, and concluded that the patient’s race and gender indeed affected the physician’s decision to rec- ommend cardiac catheterization. Specifically, the study found that Afri- can 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, as they had relative odds that were 40 percent of those for white men. The real implication of the study was actually quite simple: doctors are human. Like lawyers, businesspeople, and other professionals, doc- tors are fallible and may discriminate, consciously or subconsciously. In other civil rights contexts, it has been shown that racial bias can infect the corporate boardrooms, the schoolrooms, and the police precinct rooms. This study simply concluded that racial bias can affect who gets to the operating room. Yet, the Schulman study provoked a firestorm of criticism, as if it were the only study to document the potential role of discrimination in explain- ing racial and ethnic disparities. In a “Sounding Board” article in the New England Journal of Medicine a few months later, three physicians described the results of the Schulman study as “overstated,” although they also noted that their purpose in writing was “not to deny the occurrence of 10 Schulman K. et al. 1999. The Effect of Race and Sex on Physicians’ Recommendations for Cardiac Catheterization. New England Journal of Medicine, 340:618-626.

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633 CIVIL RIGHTS DIMENSION racial or sex bias.”11 These commentators and others questioned the un- derlying methodology, and suggested that the results are not as stark as the study suggested. Most recently, a study by a team of researchers led by Dr. Jersey Chen concluded that minority and non-minority physicians alike were more likely to recommend a white patient for cardiac catheterization than a minority patient.12 The Schulman study did not control for the race of the physician. The Chen study prompted one commentator to opine at a panel discussion sponsored by the Institute of Medicine that the Schulman study has been “largely discredited.”13 Such statements seeking 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.14 Such statements also ignore serious methodological flaws in the Chen study that a number of experts have noted.15 Most notably, the African-American physicians in the Chen study tended to be internists, not cardiologists, when compared with the white physicians. There are so few African-American cardiologists that it would likely be difficult, if not impossible, to devise a study that addresses the question presented in the Chen study using a sufficient sample of both African-American and white cardiologists. The reality is that discrimination may be hard to quantify, but is diffi- cult to deny. As Drs. Arnold Epstein of the Harvard School of Public Health and John Ayanian of the Harvard Medical School pointed out in response to the Chen study, 11 Schwartz, L. et al. 1999. Misunderstandings About the Effects of Race and Sex on Phy- sicians’ Referrals for Cardiac Catheterization, New England Journal of Medicine, 341:279-282. 12 Chen, J. et al. 2001. Racial Differences in the Use of Cardiac Catheterization After Acute Myocardial Infarction, New England Journal of Medicine, 344:1443-1449. 13 Symposium of September 6, 2001, at the National Academies of Sciences on The Role of Discrimination in Explaining Racial and Ethnic Disparities in Health Status, testimony of June O’Neill. 14 See e.g., Gornick, M.E. 2000. Vulnerable Populations and Medicare Services. New York: Century Foundation. van Ryn, M. Burke, J. 2000. The Effect of Patient Race and Socioeco- nomic Status on Physicians’ Perceptions of Patients, Social Science Medicine, 50:813-828; U.S. Civil Rights Commission. 1999. Smith, D.B. 1999. Health Care Divided: Race and Healing a Nation (University of Michigan Press). The Health Care Challenge: Acknowledging the Disparity, Confronting Discrimination, and Ensuring Equality. Washington, DC: U.S. Civil Rights Com- mission. Mayberry, R.M. 1997. Racial and Ethnic Differences in Access to Medical Diagnosis and Treatment. Atlanta, GA: Morehouse School of Medicine. 15 See e.g., 2001. Report of Institute of Medicine Committee on Understanding and Elimi- nating Racial and Ethnic Disparities in Health Care.

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634 UNEQUAL TREATMENT “Racial bias is difficult to detect in surveys of physicians or medical records. Physicians may have various biases, but they often do not perceive them, and would not report them as such. Thus, it is no surprise that previous studies have not directly documented bias. Instead, racial bias has always remained a pos- sible explanation for residual racial differences in treatment, after other explana- tory factors have been accounted for.”16 Dr. Neil Calman, a professor of family medicine at Albert Einstein School of Medicine and President and co-founder of the Institute for Ur- ban Family Health, has written and spoken extensively about his own efforts to come to grips with his own racial bias.17 A white physician practicing in the Bronx with a predominantly minority patient mix, Dr. Calman has written about how this experience has forced him to confront his own racial stereotypes that have stood in the way of quality treatment of his patients. Based on his experience, he has concluded that “the shadow of racial prejudice looms over us all.” According to Dr. Calman, until and unless physicians develop the capacity to confront their own stereotypes, it will be difficult to prevent conscious or subconscious bias from interfering with the physician-patient relationship. Dr. Calman’s thesis is consistent with those put forward by Dr. Vanessa Gamble, former vice president of the Association of American Medical Colleges, and a frequent contributor on issues of race and medicine. In a 1997 article, Dr. Gamble wrote about race and medicine, and discussed a newspaper story reporting on an African-American woman who went to the emergency room of a county hospital in Los Angeles for treatment of a suspected broken arm. 18 According to the article, interns, who were white, asked her to posi- tion her arm “like she would having a beer on a Saturday night.” The patient responded: “Do you think I’m a person on welfare?” “Well aren’t you?” was the response. The patient was actually an administrator at the University of Southern California Medical School.19 Dr. Gamble used this experience to discuss the role of discrimination in health care, and exam- ine the forces at work that would enable a physician to basically look at a person and conclude they are on welfare. 16 Epstein, A., Ayanian, J. 2001. Racial Disparities in Medical Care. New England Journal of Medicine, 344:1471-73. 17 Calman, N. 2000. Out of the Shadow, A White Inner City Doctor Wrestles With Racial Prejudice, Health Affairs, 19:170-74. 18 Gamble, V. 1997. Under the Shadow of Tuskegee: African Americans and Health Care, American Journal of Public Health, 87:1773-78. 19 Moustafa, K. April 1, 1995. U.S. Remains Worlds From Top Notch Health Care. The Fresno Bee.

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635 CIVIL RIGHTS DIMENSION The Calman and Gamble articles are also consistent with a more re- cent study led by Dr. Michelle van Ryn examining whether physicians’ perceptions of patients are affected by the patient’s race or socioeconomic status.20 Researchers concluded that physicians tended to perceive Afri- can Americans and members of low and middle SES groups more nega- tively on a number of measures than they did whites and upper SES pa- tients. As a result of this study, it is difficult to dismiss the aforementioned encounter in Los Angeles as an unrepresentative anecdote. It is also interesting to examine the van Ryn research in the context of studies on race concordance in the physician-patient relationship. A re- cent study of white and African-American patients by a research team led by Dr. Lisa Cooper-Patrick found that patients seeing physicians of their own race rated their physicians’ decision-making styles as more partici- patory.21 Another study found that African American and Latino patients were more likely to rate care as excellent and very good from physicians of the concordant race.22 These studies on race concordance and the physician-patient relation- ship do not stand for the proposition that racial bias on the part of physi- cians is the reason why African-American and Latino patients tend to prefer to be treated by African-American and Latino physicians, respec- tively. However, these studies are frequently cited in discussions on cul- tural competency, and suggest that Dr. Calman and Dr. Gamble are cor- rect in stating that it is important for physicians to develop an enhanced capacity to step into the shoes of their patients. These studies, and Dr. Calman’s insights, reinforce the conclusion of the Schulman study, as well as other studies, that it is important to focus on the potential role of racial bias as a possible factor explaining racial and ethnic disparities. More recently, Dr. Kevin Schulman was the co-author of another study similar in nature to his aforementioned 1999 study that provoked such widespread debate. In this study, the research team again used simu- lated patients in an effort to understand the effect of race and gender on provider decision-making, except that medical students, as opposed to physicians, were the providers in question.23 Once again, the researchers concluded that the race and gender of the patient had a significant effect 20 van Ryn, M. et al. 2000. The Effect of Patient Race and Socioeconomic Status on Physi- cians’ Perceptions of Patients, Social Science and Medicine, 50 (2000):813-828. 21 Cooper-Patrick L. et al. 1999. Race, Gender, and Partnership in the Patient-Physician Relationship, JAMA, 282:583-589. 22 Saha, S. et al. Patient-Physician Racial Concordance and the Perceived Quality and Use of Health Care. Archives of Internal Medicine, 159:997-1004. 23 Rathore, S., Schulman, K. et al. May 2000. The Effects of Patient Sex and Race on Medical Student’s Ratings of Quality of Life, American Journal of Medicine, 108:561-566.

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636 UNEQUAL TREATMENT on the medical student’s assessment. In other words, race matters for both medical students and physicians alike, according to the two Schul- man studies. Some medical students appear to be entering medical school with certain stereotypical notions of people of other races, and these erro- neous notions can have an ill effect on their ability to treat people of dif- ferent races effectively and fairly. The discussion thus far has focused on physician perceptions and physician behavior in providing patient care. In the debate about the potential role of racial bias in physician decision-making, what is fre- quently overlooked is the perceptions of the patients themselves. As mentioned earlier, Drs. Epstein and Ayanian, in responding to the re- cent Chen article, noted that many physicians may not perceive bias. It is important to understand the starkly contrary perceptions of many patients of color. In a 1999 survey by The Henry J. Kaiser Family Foundation, African Americans were more than twice as likely as whites to state that discrimi- nation in health care is a major problem, almost three times as likely to believe that African Americans receive lower quality health care than whites, and fourteen times as likely to report that they were treated unfairly because of race when seeking medical care in the recent past.24 According to the Public Health Special Report of Seattle and King County, nearly one-third of African-American respondents living in central and southeast Seattle reported experiencing racial discrimination when seek- ing health care, compared to 13% of all respondents.25 Surveys of perceptions undeniably have certain limitations; yet, they are critically important because perceptions so frequently drive behavior, and perceptions are often a function of historical, negative experiences with the health care system. The aforementioned data suggest that there is a strong perception within communities of color that discrimination, whether conscious or subconscious, indeed plays an important role in ex- plaining racial and ethnic disparities in health. Overall, while there are some who believe that the research does not support the conclusion that discrimination plays an important role in ex- plaining racial and ethnic disparities, the weight of the evidence from the research is to the contrary. It would be imprudent to fixate on the use of odds ratios in one study and ignore the strong body of research suggest- ing that physicians are indeed human, and are susceptible to conscious 24 The Henry J. Kaiser Family Foundation. 1999. Race, Ethnicity, and Medical Care: A Survey of Public Perceptions and Experiences. 25 Seattle and King County Public Health Department. 2001. Racial and Ethnic Disparities in Health Care Settings, Public Health Special Report.

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653 CIVIL RIGHTS DIMENSION lic for the first time. Once the data were publicly disseminated, commu- nity-based organizations and other advocacy groups were empowered because they could use the HMDA data to compare data on area lenders and put pressure to bear on lenders that appeared to have problematic data. It was not until the Sunshine Amendment of 1989 that an industry of social scientists emerged who spent considerable effort breaking down HMDA and other data to pinpoint the potential role of various explana- tory factors, including but not limited to discrimination. As a result of these analyses, investigators were able to answer for the first time the critical question: did discrimination infect the process, or were the dis- parities a function of other, non-discriminatory factors? In a number of cases, discrimination was pinpointed as a root cause, and the Department of Justice settled a number of mortgage lending cases during the 1990s, including: • United States v. Albank: The bank agreed to provide $55 million in loans at below market rates to settle a suit alleging that the bank refused to take mortgage loan applications from significant minority populations. • United States v. Decatur Federal Savings and Loan: The bank agreed to pay $1 million to compensate 48 victims of discrimination after extensive review of bank records revealed that the bank applied stricter underwriting standards to African-American applicants than it did to white applicants. The Lessons of HMDA There are a host of lessons that can be gleaned from the HMDA expe- rience. First, HMDA has given meaning to the adage that “knowledge is power” because it has assisted in answering critical questions about the role of discrimination. Knowledge can also be powerful in the health care context. Second, HMDA illustrates that it is not simply important to collect data; rather, it is important to collect the right data. In the health context, stakeholders can and must develop consensus on standard data collec- tions methods, as well as the types of data that should be collected. Oth- erwise, it becomes difficult to compare and analyze data. Perhaps data collection will differ between geographic areas. However, it is important to develop a commonly accepted language of data collection. Third, it is also important to reevaluate the data being collected on a periodic basis. In the HMDA context, for instance, there currently is no data being collected by race and ethnicity on the interest rate that is being charged. With the emergence of predatory lending as a formidable civil rights challenge, the absence of these data is problematic. Similarly, in the

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654 UNEQUAL TREATMENT health care settings, it is important to reexamine data collection protocols regularly and adjust to meet emerging concerns. Finally, and perhaps most importantly, it is not simply important to collect data. It is also important to report data, and ensure that data are accessible to the public at large. The 1989 Sunshine Amendment marked a critical turning point under HMDA. Similarly, allowing public access to data will enable policymakers and the public at large to have a better handle on critical questions and potential trends. In so doing, it is impor- tant to be mindful of considerations of medical records privacy, as well as the recently enacted federal medical records privacy regulation. How- ever, it is possible to obtain basic necessary information without running afoul of the privacy regulation. Racial Profiling: The Importance of Data Collection Racial profiling by law enforcement is one of the most frequently dis- cussed civil rights issues. Once again, the debate mirrors the racial dis- parities discussion. Critics contend that police officers target African Americans and Latinos on account of their race, and stop them improp- erly and illegally. Police officials counter that a person’s race is not the basis for a traffic stop. Rather, a police officer takes a host of factors into account. Racial profiling was the subject of debate during the past presi- dential election race, with both candidates decrying the practice. There is considerable disagreement about how to go about answering the question of whether police officers are engaging in racial profiling. The Special Litigation Section of the Civil Rights Division of the Depart- ment of Justice has the authority to investigate racial profiling cases. It has concluded that an effective means of resolving this issue is to collect data on traffic stops. As a result, a number of recent consent decrees in police misconduct cases have included provisions mandating the collection of racial and ethnic data on traffic stops. Agencies that have agreed to col- lect data include the Pittsburgh Police Department and the New Jersey State Police.44 Data collection is not limited to consent decrees. According to a Feb- ruary 2000 fact sheet issued by the Bureau of Justice Statistics of the United States Department of Justice, a total of 37 police agencies collect racial demographic information on traffic-related arrests with close to a dozen states mandating such efforts. This number is growing. Congress is de- bating a bill that would mandate the collection of data on race and ethnicity in traffic stops. If passed, this bill, among other things, would 44 To review these consent decrees, see www.usdoj.gov/crt/split.

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655 CIVIL RIGHTS DIMENSION require the development of a uniform system for collecting the data, so that the appropriate data are collected. Critics are concerned that the data will somehow be misused. The federal legislation addresses this concern with its provision for the devel- opment of a uniform data collection system. Opponents of data collection continue to express concerns about potential misuse of data, and a belief that collecting the data will not answer the question. Regarding data collection, two things appear clear in both the racial pro- filing and the health care context. First, simply collecting the data will not answer the question of whether discrimination is at work. The data will have to be analyzed and, as shown in the HMDA setting, such inquiry can shed light on critical questions. Second, failing or refusing to collect data guaran- tees that the critical questions about the root causes of disparities will never be answered definitively. As one high-ranking official of the San Diego County Sheriff’s Department stated, after the Department agreed to collect racial and ethnic data on traffic stops, “[the community] deserve[s] an an- swer on what’s really going on here.”45 The public also deserves an answer on what is really going in the disparities context, and the collection of racial and ethnic data holds a key to answering so many critical questions. Conclusions Regarding Data Collection Effective data collection is the lynchpin of any comprehensive strat- egy to eliminate racial and ethnic disparities in health. Collecting data on race, ethnicity, and language of preference is a quality of care as well as a civil rights issue. Health providers should not wait for HHS to mandate the collection of data relating to race, ethnicity and language of prefer- ence. Fortunately, many health care providers have already begun to col- lect these data, and many states also require the collection of data. But these patchwork efforts are not nearly sufficient. HHS must exert leader- ship and mandate the collection of data, and assist in the development of uniform data collection systems. The expertise certainly exists within HHS to perform this critical task. 2. Strengthen the Federal, State, and Private Health Care- Related Civil Rights Infrastructure Discrimination in health care is the forgotten frontier of civil rights. It is seldom discussed. There are relatively few private advocacy organizations 45 February 26, 1999. San Diego To Study Racial Profiling–Officers Will Collect Race Data on Every Traffic Stop, www.apbnews.com/cjprofessionals/behindthebadge/1999/02/26/ sandiego0226_01.html.

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656 UNEQUAL TREATMENT involved in a steady diet of health care related civil rights advocacy. The National Health Law Program is perhaps the most effective national advo- cacy organization that focuses on the intersection of health care and civil rights. Due to resource constraints, other private civil rights organizations have been forced to scale back their health care practices in recent years. The Department of Justice’s Civil Rights Division has 10 different sec- tions that address critical areas such as education, employment, housing, disability rights, and the like. There is no section whose exclusive or even primary mission is to address the intersection of health care and civil rights. There are sections that address health-related civil rights issues, and these sections make an important contribution. However, given the importance of health care, and the history of discrimination in health care, it would be useful if health care were on equal footing with education, housing, employment, and other critical building blocks of self sufficiency. The Office for Civil Rights at HHS is the lead federal agency combat- ing discrimination in the health care setting. The first budget of HHS OCR (fiscal year 1980) was $22 million, which supported approximately 550 employees. The budget remained stagnant for the ensuing two de- cades, and the budget for fiscal year 2000 was also $22 million, which supported only 215 employees. As a result, it has been difficult for OCR to carry out its critically important mission in a fully effective manner. Nonetheless, OCR has established a body of cases that document continu- ing instances of discriminatory activity, in violation of Title VI. A 1999 report from the U.S. Civil Rights Commission was quite criti- cal of some of OCR’s work in the Title VI context, and cited the chronic underfunding. Among other things, the Report recommended a substan- tial boost in funding for OCR. The budget for fiscal year 2001 increased substantially to $28 million. However, this substantial increase is only a fraction of OCR’s true need. OCR’s staff has decreased over 50 percent during the past 20 years, even though its enforcement responsibilities have increased dramatically with the passage of new civil rights laws, such as the Americans with Disabilities Act. As a result of Sandoval, OCR’s role in enforcing Title VI has become even more important, because it is more difficult for private plaintiffs to bring many Title VI claims. In order to address the disparities challenge effectively, OCR must have substantial increases in its budget. The substantial hike in 2001 was important, but should be viewed as just a start. HHS as a whole is spend- ing hundreds of millions of dollars addressing racial and ethnic dispari- ties. OCR should have a much greater share of these dollars. Among other things, increased resources would enable OCR to develop the insti- tutional capacity to perform the sophisticated analyses necessary to an- swer difficult questions discussed earlier, such as why so few people of color are accessing certain medical procedures in a particular facility.

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657 CIVIL RIGHTS DIMENSION State governments must also expand their health care-related civil rights enforcement infrastructure. California, for instance, has more people with limited English skills than any other state. Yet, the state office responsible for ensuring that counties comply with their civil rights obligations in the language access context has only a handful of people. It is simply impossible to carry out effective enforcement and compliance monitoring with a skeleton crew. The foundation community has been supportive of private advocacy organizations that are involved in a wide-ranging set of initiatives de- signed to address racial and ethnic disparities in health. The California Endowment, for instance, has made a major investment in the area of language access. However, additional foundations must step to the plate and expand the capacity of private organizations to address these dispari- ties. In some circumstances, such as combating discrimination in man- aged care, this may mean supporting litigation activities, which a number of foundations have been reluctant to do. Strengthening the governmental and private civil rights infrastruc- ture will go a long way toward ensuring that the civil rights concerns are addressed. 3. Develop a Comprehensive Language Access Agenda Ensuring language access for people with limited English skills is ar- guably the most important measure that could be taken to reduce dispari- ties among the rapidly expanding immigrant populations. Ensuring lan- guage access is also a quality of care issue. The solutions are not difficult to envision. In fact, many providers across the country, large and small, urban and rural, have put into place model programs that are both cost- effective and are improving the quality of life for people with limited En- glish skills. Yet, the solutions are all too elusive in too many parts of the coun- try, and the demand for these services is increasing. Under the leader- ship of Secretary Donna Shalala, HHS focused substantial time and en- ergy on language access issues. The OCR Title VI policy guidance was issued in August 2000, on the heels of an Executive Order in which former President Clinton directed leaders across the federal government to address language access challenges. Following the policy guidance, HHS developed an agency-wide Strategic Plan on language access, de- signed to ensure that HHS has the capacity in its own programs to en- sure meaningful access to people with limited English skills. In short, HHS has attempted to set the tone on language access, and these efforts are continuing.

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658 UNEQUAL TREATMENT A number of additional steps can be taken on the language access front. Potential steps include the following: A. More Foundations Must Get Involved Foundations must continue to provide support to language access ef- forts. For instance, there are many best practices across America, but sur- prisingly little sharing of information. Foundations can promote sharing of best practices, as can HHS. Foundations must also continue to support efforts to implement innovations. The United Hospital Fund, for instance, has been instrumental in bringing together providers and community- based organizations to develop a promising system of medical interpreta- tion that uses wireless remote technology and would enable providers to meet a wide range of need. More foundations need to make a substantial commitment to language access. B. Educate and Train Providers on Their Obligation to Provide Lan- guage Assistance Services A massive training and education campaign must be undertaken to ensure that providers understand their obligations to ensure meaningful access to people with limited English skills, and also appreciate that it is possible to implement solutions that work and are not prohibitively ex- pensive. OCR spends as much time on language access issues, including training and outreach, as any issue in its portfolio of responsibilities. De- spite these efforts, and despite the recent publication of the OCR guid- ance, all too many providers are unaware of their responsibilities under Title VI to ensure meaningful access to people with limited English skills. Foundations and HHS should support the establishment of technical assistance centers that would assist providers in developing language as- sistance programs, educate communities on their rights under Title VI, and conduct research on a number of critical issues in the language access context, such as whether the provision of effective language assistance services is actually cost-effective. Providers frequently express a desire for technical assistance in developing effective programs. However, some providers are reluctant to reach out to OCR for assistance, because they fear that OCR will conduct a review and find them in violation of Title VI. They are sometimes fearful of reaching out to community-based organi- zations or advocacy groups, because they perceive that these groups may sue them. Technical assistance centers would be the neutral entity with expertise to assist providers in a non-threatening manner, disseminate best practices, and perform research. C. Address the Critical Financing Challenge Any plan to enhance language access must address the financing chal- lenge. For providers, the financing challenge is the critical issue in lan- guage access. Many providers contend that they are willing to comply

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659 CIVIL RIGHTS DIMENSION with Title VI, but simply cannot afford the cost of an interpreter. For instance, following the issuance of the OCR policy guidance on language access, the American Medical Association expressed concerns to then Sec- retary Shalala and, subsequently, to Secretary Thompson that the costs of compliance for physicians would be prohibitive. Cost concerns are certainly understandable. It is important to learn from the numerous providers and states that have developed comprehen- sive programs that have not placed the exclusive burden of compliance upon physicians. For instance, Washington State has developed an im- pressive program of cost reimbursement for language assistance that makes substantial use of Medicaid matching funds. As a result, if a phy- sician is seeing a Medicaid patient with limited English skills, he or she simply makes arrangements with the state agency that will provide a qualified interpreter at no charge to the physician or patient. The state also provides translation of critical documents and forms, such as consent forms, into over 60 languages. Washington’s experience illustrates that it is possible to meet the fi- nancing challenge. However, meeting the challenge requires leadership, ingenuity and financial commitment from the state. It can be done, but Washington regrettably is an exception rather than the rule. The lesson from the Washington experience is that the financing challenge requires leadership from state government leaders. In the Medicaid and SCHIP context, HHS already provides matching funds for the costs of language assistance services, and there is no upper limit on the amount of matching funds that HHS will provide. States must step forward and commit to tapping into these matching funds by declaring that language assistance services are essential services, just as a physician is essential. More states need to follow Washington State’s lead. D. Encourage Innovation There are a number of promising practices in language assistance, and the federal government and private foundations must expand their support for innovation. The Office of Minority Health and the Agency for Health Research and Quality (AHRQ) within HHS, along with a number of private foundations, have funded a number of innovative programs. However, other federal agencies, as well as additional foundations, can and should support these efforts. E. Develop a Research Agenda on Language Access A robust research agenda exists in language access, and should be supported by HHS and private foundations. Questions that merit further research include: • Is the provision of adequate language assistance services cost- effective for providers?

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660 UNEQUAL TREATMENT • Are certain types of language assistance more effective in ensuring meaningful communication? • Does fluency in English affect access to critical services, such as immunizations? • What do the most effective language assistance programs have in common? Overall, language access is the low hanging fruit of racial disparities in that many promising interventions have been identified, and are ca- pable of implementation. Yet, the low hanging fruit is still on the tree, and additional leadership and visibility must be given to this issue. 4. Identify and Eliminate Other Barriers for Immigrants Language access is critical for immigrant communities. However, all stakeholders must be vigilant in continuing to identify and eliminate addi- tional barriers that inhibit many legal immigrants from accessing critical health care. OCR has led a nationwide initiative to examine application forms for public benefits to ensure that they do not make irrelevant inquir- ies that have the effect of chilling participation in programs such as Medic- aid and SCHIP. Considerable work lies ahead on this issue, and other bar- riers frequently emerge. Community-based organizations are critical to this effort, as their collective fingers are closest to the pulse of immigrants, and they enjoy the trust of immigrants. As a result, it is important to support their efforts, and important for government to partner with community- based organizations on outreach and education campaigns. 5. Preventing Discrimination Through Education of Providers and Patients In addressing the root causes of disparities, Dr. Jack Geiger noted re- cently that racial bias and lack of cultural competence on the part of health care workers “may be the most directly remediable problem, if they are honestly recognized and if programs are designed to address them.”46 Many providers and schools have begun to implement programs of study on cultural competence. The Office of Minority Health at HHS issued Standards on Cultural and Linguistic Competence in 2000.47 There is sub- 46 Geiger, J. June 12, 2001. Racial Stereotyping and Medicine: The Need for Cultural Com- petence, Canadian Medical Association Journal, 164(12):1699-1700. 47 Department of Health and Human Services. 2000. Office of Minority Health National Standards on Culturally and Linguistically Appropriate Services (CLAS) in Health Care. Federal Register 65(247).

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661 CIVIL RIGHTS DIMENSION stantial financial support from governments and foundations for these overall efforts to promote cultural competence. There are proposals to make such efforts a requirement for the accreditation of health profes- sional schools. But the work is just beginning, and it is necessary to ex- pand these efforts, and to develop tools that will enable policymakers and providers to measure the effectiveness of these training programs. This training must include discussion of civil rights obligations of health care providers. It is important not only to educate health care providers, but also to educate and empower patients themselves, and assist them in navigating the often-treacherous terrain of health care. Harlem Hospital in New York, for instance, has implemented a patient navigator program designed to provide advocates for patients who can assist them in asking the ap- propriate questions, and making the necessary inquiries as they access the health care system. Many immigrants are reluctant to question au- thority figures, such as physicians, and patient navigator programs are helpful in ensuring that the necessary questions are asked. Community- based organizations can play a critical role in educating and empowering patients. It would be useful to implement and study the effectiveness of a number of patient empowerment programs that affirmatively reach out to vulnerable populations and educate them about a wide panoply of is- sues in health care, including but not limited to civil rights. 6. Fix Sandoval Congress should act to restore the status quo that existed prior to Sandoval by passing legislation to reestablish that there is a private right of action for disparate impact discrimination under the Title VI regulation. The failure to restore the private right of action will mean that private advocacy organization will have to fight many health care discrimination battles with one hand tied behind their backs. The failure to restore the private right of action will also place more pressure on an already over- burdened OCR to pursue disparate impact cases. Sandoval is not limited in its impact to language access cases. Private plaintiffs interested in pursuing disparities complaints in other contexts, such as access to treatment in hospitals, will find it more difficult, if not impossible, to make use of Title VI. For instance, if the evidence demon- strates that a hospital policy, such as a referral practice or admission policy, is having a disparate impact on the ability of minorities to use the facility, a private plaintiff would be prohibited under Sandoval from suing the hospital under Title VI. Proving disparate impact discrimination under Title VI is hard enough, given the difficulty of unpacking the complex maze of interactions in the

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662 UNEQUAL TREATMENT health system. Sandoval provides an additional disincentive for an already small cadre of lawyers who address civil rights issues in health care. 7. Develop the Capacity and Infrastructure to Address Critical Civil Rights Questions in Managed Care Some of the most complex civil rights issues occur in the managed care context. Racial disparities may be a function of a potential collision of market forces and practice patterns of minority physicians, who tend to have patient pools that are disproportionately minority, poor, and poten- tially less healthy. Given this potential collision, it is not difficult to un- derstand why over 90 percent of African-American doctors believe that managed care organizations discriminate against them in contracting. The critical question is whether the perceptions of discrimination are the real- ity, or whether managed care organizations are engaging in legitimate business practices. Regrettably, there is very little research that has addressed this criti- cal question.48 There are few lawsuits that have addressed this issue; how- ever, as a result of continuing concerns raised by the National Medical Association and its membership, this may change. Grantmakers both within and outside government should support efforts to study this issue in greater depth, and attempt to determine whether the perceptions of many physicians of color are accurate or not. The lack of a sufficient pri- vate infrastructure of organizations that address discrimination in health care is hindering the effort to answer these critical questions. OCR’s ac- tivities in managed care have focused primarily on language access is- sues. Issues of redlining in managed care and potential discrimination in selection and de-selection of physicians for provider networks, have re- ceived less attention, not because they are less important. Supporting a research agenda in this area, and supporting the efforts of private organi- zations to study the critical questions of potential discrimination in man- aged care, either in a litigation or non-litigation context, is critical to ad- dressing the broader concerns once and for all. 8. Perform a Civil Rights Self-Assessment It is exceedingly difficult, time-consuming, and costly to perform the sophisticated regression and other analyses that will enable investigators 48 For a further discussion of civil rights issues in managed care, see Rosenbaum, S. 2001. Racial and Ethnic Disparities in Health Care: Issues in the Design, Structure and Adminis- tration of Federal Health Care Financing Programs Supported Through Direct Public Fund- ing, Institute of Medicine Committee on Understanding and Eliminating Racial and Ethnic Dispari- ties in Health Care.

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663 CIVIL RIGHTS DIMENSION and researchers to pinpoint with precision the precise causes of a particu- lar disparity. Many providers are not waiting for the completion of this analysis, and initiated a series of activities, such as cultural competence training and review of language access programs. As part of its outreach and technical assistance, OCR, led by Michael Carter, regional manager in New York, developed a civil rights self-assessment tool. This instrument is aimed at enabling providers to ask a series of important questions that will enable the provider to assess current policies and practices, modify policies and practices that may have a discriminatory effect, and institute innovative measures to ensure that communities of color can have mean- ingful access to the facility. The self-assessment tool is a prevention tool designed to encourage voluntary compliance efforts. Providers should consider using this tool or some other instrument that will enable it to perform a critical civil rights self-assessment. CONCLUSION Eliminating racial and ethnic disparities in health status is a moral imperative for which there is no single magic bullet. As policymakers, politicians, and the health care profession grapple with how to eliminate disparities, it is time to acknowledge certain realities about disparities. It is indeed deadly to be poor in America, and communities of color are disproportionately poor. Yet, the disparities story does not end with eco- nomics, and any story that does is simply incomplete. Similarly, a dis- parities story that ignores the potential role of race and racial discrimina- tion is also incomplete. This paper has documented specific settings where forces of discrimi- nation are at work in the health care system, and has identified other ar- eas where there is insufficient information to make a definitive judgment about the role of discrimination. It is critically important to understand the civil rights dimension of the disparities challenge, and acknowledge the unpleasant reality that race often matters in health care. It is equally important to implement solutions, many of which are described above, to address areas where discrimination is clearly at work, and to support the necessary research and advocacy to resolve the unanswered questions.