In an effective public health policy, appropriate state and federal laws must be available to eliminate discriminatory practices in health care. Thus, the crux of the problem, given managed care, the historical inequity in health care, and “unthinking discrimination,” the laws do not address the current barriers faced by minorities. The executive branch, the legislatures and the courts are singularly reluctant to hold health care institutions and providers responsible for institutional racism. As the United States Commission on Civil Rights found:

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 . . . [Such failure has] . . . resulted in a failure to remove the historical barriers to access to quality health care for women and minorities, which, in turn has perpetuated these barriers.

Health Care Anti-Discrimination Act should be enacted which would (1) recognize multiple forms of discrimination (2) authorize and fund testers, (3) assure fines & regulatory enforcement (4) require a health scorecard/report for health agency, provider or facility, and (5) require data collection and reporting.

A. Recognize Multiple Forms of Discrimination

Racial inequity in medical treatment rarely occurs because of overt, intentional discrimination behavior. Most race discrimination that occurs in health care is probably the result of subconscious bias, disproportionate impact of policies and practices, disparate impact. A state law on health care discrimination would at a minimum define discrimination in a way that included: intentional discrimination, subtle discrimination, unthinking discrimination and disparate impact. The law should define intentional discrimination to include knowledge of disparate impact and failure to take effective steps to reduce impact. Furthermore, any affirmative defenses, such as business necessity, should be limited and narrowly defined.

B. Authorize and Fund the Use of Medical Testers

To discourage health care discrimination, an 'aggrieved person' should include not only the individual who has been injured, but also one who believes that he or she will be injured, as well as individuals engaged as testers and organizations engaged in testing. In testing, the testing organization sends persons pretending to be patients who share common traits or symptoms except their race to health care facilities or providers to prove that patients of a particular race receive different treatment. This is important because much of health care discrimination goes unnoticed, unsuspected, undetected, or unreported.

Even in cases where discrimination is suspected, the victim will have an almost impossible time developing adequate proof because there will be almost no opportunity to witness better treatment to a similarly situated white patient. “Testing” could provide both evidence in the individual case and some accurate empirical data on the overall rate at which discrimination occurs in health care. Testing has been widely used to enforce Title VIII, which prohibits discrimination in the sale, advertising, and rental of housing. However, while use of tests under Title VIII is well-settled, it is an issue of great debate in other areas, such as employment discrimination under Title VII and section 1981 of the Civil Rights Act of 1866. A statute that authorizes the use of testers will bypass that debate in the courts because the Supreme Court has already noted that “Congress may enact statutes creating legal rights, the invasion of which creates standing, although no injury would exist without the statute.”

C. Provide a Private and Organizational Right of Action

An anti-discrimination health care statute would provide for a private right of action and organizational right of action. The private right of action would assure that individuals (including testers) would have standing to sue not only under the statute but also under any implementing regulations; thus, avoiding the problem that occurred in federal civil rights enforcement. Furthermore, there are many reasons why limiting enforcement to state agencies may be inadequate. For instance, the agency may not have sufficient staff to devote the resources necessary to enforce the civil rights violations. Administrative complaints with state agencies rather than going to court may limit some avenues of redress. State agencies may be limited in their capacity to mandate redress for aggrieved plaintiffs. Without a private right of action, racial discrimination in health care will be impossible to eliminate.

In addition to the private right of action, an organizational right of action is essential to allowing testing to be carried out more broadly by civil rights organizations. These organizations and testers would have standing to sue and could recoup the costs of testing programs. This would provide the necessary incentive for civil rights organizations to create testing programs and make their existence known to potential victims of discrimination.

D. Establish Equality Health Care Council

The act should establish “Health Care Council,” patterned after Fair housing councils. This council could serve several distinct functions, including educating the public, training health care providers and institutions, providing counseling and health care-finding services to individuals, investigating discrimination complaints--mostly through testing--and pursuing legal remedies. Such council would provide a focal point, anti-discrimination work in health care. It could easily be an extension of existing state minority health efforts. Thus, when someone believes she has been discriminated against in a health care, she would have somewhere to turn for help.

E. Prevailing Party Attorney Fees

The health care anti-discrimination statute would provide for attorneys' fees for a prevailing party. Many federal statutes authorize attorneys' fees for a prevailing party. The statute should grant prevailing party status when, because of the law suit, a party's ends are accomplished. Under the catalyst theory, the focus is on whether the party obtained its desired result, despite whether the party obtained a favorable ruling. Prevailing Party Attorney Fees would help to provide the financial incentives needed to pursue.

F. Punitive Damage, in Part or in Whole, to Fund Monitoring and Assessment Programs

Compensatory damages make discrimination victims whole for injuries to their injuries. Punitive damages, on the other hand, punish past conduct, teach defendants not to commit these acts again and deter others from similar behavior. Similar to split-recovery statutes, all or part of the punitive damages should be placed into a fund that would ultimately be used to promote equality health care including discrimination testing.

G. Require Data Collection and Reporting

Current data collection efforts fail to capture the diversity of racial and ethnic communities in the United States. Data are aggregated information on subgroups within the five racial and ethnic categories that are not collected systematically. Further, racial and ethnic classifications are often limited on surveys and other data collection instruments, and minorities are often misclassified on vital statistics records and other surveys and censuses. To fully understand the health status, of all individuals, as well as to recognize the barriers they face in obtaining quality health care it is important to collect the most complete data on underrepresented groups, and sub-populations. The lack of data on these groups 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.

Given the array of potential issues, some researchers have argued that health data should not be disaggregated by race. It could be argued that the use of race in health data promotes and maintains the view that race is a biological concept or that racial categorizations perpetuate and encourage racial fragmentation. Such views see potential for harm from the use of race.

However, there are a number of important and compelling reasons for disaggregating health status and health care data by race. First, the use of race is not the cause of racism but the result of racism. That is, individuals have been discriminated against based on color; established hierarchy and superiority are based on color. Consequently, racism and racial discrimination will continue to exist (that is, discrimination based on color) even if terminology change or cease to exist. For instance, even though race data are not collected in the European Union in the same way as they are in the United States, racism and racial discrimination continues to exist as a worldwide problem. Here in the United States, even when one controls for socioeconomic status, health status and health care differentials continue to exist.

Second, racism and racial discrimination have implications for every institution and social practice. Health status is impacted by racial discrimination in housing, employment, environment, education, and other institutions. Third, calls to not disaggregate data ignore the power and status differentials that exist among all racial groups. point is illustrated when one considers the disproportionate percentage of racially disadvantaged individuals who are poor. Fourth, as long as some groups continue to experience discrimination, it is important to monitor their well being. Fifth, to fully understand the health status of all individuals as well as to recognize the barriers they face in obtaining quality health care, it is important to collect the most complete data on “racially disadvantaged” groups and ‘sub-groups‘. The lack of a uniform data collection method makes obtaining an accurate and specific description of racial discrimination in health care difficult, if not impossible. Such data collection has to include collecting data on provider and institutional behavior.

“Although not useful as a biological category, race has been and is likely to continue to be an important social category. It is what sociologists call a master status-a central determinant of social identity and obligations, as well as of access to societal rewards and resources. From our earliest health records, race has been an empirically robust predictor of variations in morbidity and mortality. Collecting the appropriate data on race can facilitate ongoing monitoring of the magnitude of differentials, enhanced understanding of their causes and the development of effective interventions to address them.”

Race matters because racism and racial discrimination matter. Disaggregating data based on race is important because it helps to make the impact of racism and racial discrimination visible and thus allows us to address the root problem.

H. Require a Health Report Card for Health Agency, Provider or Facility

If we are serious about eliminating racial discrimination, the systematic collection and reporting of data from each health care provider on racial inequities in the use of services and the choices of diagnostic and therapeutic alternatives would provide an additional tool in civil rights monitoring. The “report card” approach is not new and is being done to “assure accountability, consumer choice, and goal-directed action.” Existing and proposed health care ‘report cards‘ could be used and only need to be stratified by race. As Sidney Watson discussed:

Reporting race-based data on health care is relatively easy once we get over our squeamishness about talking about race and recognize the need for this information. Physicians already gather information on patient race as part of a standard medical history. All this is needed is to compile and report racial and ethnic information in a format that protects patient confidentiality and privacy. . .

Report cards that reflect racial disparities will provide a strong evidence that racism, “intentional or unintentional, institutional or individual--is affecting patient care.”

I. Assure Adequate Fines and Regulatory Enforcement

The importance of rigorous enforcement of regulation as a primary vehicle for policing health services cannot be overemphasized. The collection of data and the development of a report care need the teeth of regulatory enforcement. Thus, a statute which allows significant civil penalty to be assessed for violation of regulations designed to eliminate racial inequities is important to compliance. Current administrative penalty involves termination of funds. Such a step is highly unlikely; consequently, it is the effective equivalent of having no penalty at all. If substantial fines were mandated and collected for violating anti-discrimination law, then such fines could be collected and deposited directly into a restricted account that could be used only to enhance and improve racial inequities.