By Robert García and Daphne P. Hsu*on October 4, 2013 11:00 AM
"Of all the forms of inequality, injustice in health care is the most shocking and inhuman." -- Dr. Martin Luther King, Jr.
Section 1557 and Antidiscrimination
The Affordable Care Act provides health insurance coverage for many people who previously could not afford it, or who were denied coverage because of preexisting medical conditions. People may qualify for help with the cost of health coverage, depending on their household size and income. Congress passed the bill, and President Barack Obama signed it into law in 2010. The United States Supreme Court upheld the law in 2012 in relevant part. New health insurance exchanges under the Act, like HealthCare.gov and Covered California, opened on October 1, 2013, and provide a marketplace to help people find health coverage and compare different plans.
People of color are much more likely to be uninsured than non-Hispanic Whites. They constitute about one-third of the U.S. population, but make up more than half of the 50 million people who are uninsured, according to the Kaiser Family Foundation.
The Affordable Care Act also provides important protections against health discrimination based on race, color, national origin, limited English language proficiency (LEP), sex, disability, and age, in Section 1557.
Section 1557 applies to any health program or activity, any part of which receives federal financial assistance (including credits, subsidies, or contracts of insurance). This includes public and private entities that receive such federal funds. Section 1557 also applies to any program or activity administered by an executive agency, including federal health programs like the Federal Employee Health Benefits Program (FEHBP) and Medicare, as well as programs jointly administered by federal and state governments, such as Medicaid and the Children's Health Insurance Program. In addition, it covers any entity established under Title I of the Affordable Care Act, such as the health insurance marketplaces.
Section 1557 references prior laws that provide some protection against health discrimination (Title VI of the Civil Rights Act of 1964, Title IX of the Education Amendments of 1972, section 504 of the Rehabilitation Act of 1973, and the Age Discrimination Act of 1975).
Civil rights and public health organizations, and social science experts, have submitted public comments on implementing Section 1557 to the United States Department of Health and Human Services (HHS), the federal agency that is primarily responsible for implementing the Act.
Why are the equal justice protections in Section 1557 necessary to protect health and life itself?
Disparities in Health, Prevention, and Wellness
The Agency for Health Care Research and Quality (AHRQ) has documented differences in health care by race and ethnicity, annually since 2003. For example, its 2011 report concludes: "All Americans should have equal access to high-quality care. Instead, we find that racial and ethnic minorities and poor people often face more barriers to care and receive poorer quality of care when they can get it." On health care access, AHRQ found:
- Blacks had worse access to care than Whites for 32% of access measures.
- Asians had worse access to care than Whites for 17% of measures.
- American Indians/Alaska Natives had worse access to care than Whites for 62% of measures.
- Hispanics had worse access to care than non-Hispanic Whites for 63% of measures.
- Poor people had worse access to care than high-income people for 89% of measures.
Disparities in access are not improving, and some are getting worse. The AHRQ report concludes: "Across the measures of health care access tracked in the reports, about 50% did not show improvement and 40% were headed in the wrong direction."
In terms of quality, AHRQ found as follows:
- Blacks received worse care than Whites for 41% of quality measures.
- Asians and American Indians and Alaska Natives (AI/ANs) received worse care than Whites for about 30% of measures.
- Hispanics received worse care than non-Hispanic Whites for 39% of measures.
- Poor people received worse care than high-income people for 47% of measures.
The quality of health care provided to people of color is often not equitable. It is not safe: Asian/Pacific Islanders and Hispanics are more likely to die from complications of hospital care than Blacks or Whites; Blacks are more likely to suffer from post-operative complications than other groups. It is not effective: people of color are often less likely to receive important preventive and early diagnostic services. It is not patient-centered: Asian and Hispanics are less likely to understand their doctor and less likely to feel their doctor has listened to them; Blacks and Hispanics are less likely to report confidence and trust in their specialty physician than Whites.
The documented costs of inequalities are great. Between 2003 and 2006, for example:
- The combined costs of health inequalities and premature death in the U.S. were $1.24 trillion.
- Eliminating health disparities for people of color would have reduced direct medical care expenditures by $229.4 billion.
- 30.6% of direct medical care expenditures for African Americans, Asians, and Hispanics were excess costs due to health inequalities.
- Eliminating health inequalities for people of color would have reduced indirect costs associated with illness and premature death by more than one trillion dollars.
Discrimination on the basis of national origin encompasses limited English proficiency (LEP). Evidence-based social science research has shown benefits from reducing language barriers for people with LEP, advancing cultural competency, and enhancing diversity programs.
Section 1557 must protect the rights of immigrants. In addition, inquiries into citizenship, immigration status and Social Security numbers in applications for Medicaid, State Children's Insurance Program, Temporary Assistance for Needy Families, and food stamps may discriminate against people from "mixed status" families, such as citizen children who have non-citizen parents.
Section 1557 marks the first time that federal law contains a broad-based prohibition of sex discrimination in health programs or activities. Sex discrimination includes discrimination based on pregnancy, gender identity, and sex stereotypes. For example, although women disproportionately experience chronic pain, women experience disparities in pain care that result from gender bias, neglect, dismissal, and discrimination from the health care system, according to the Institute of Medicine.
Individuals with disabilities report discriminatory physical, programmatic, and attitudinal barriers to health care. Some of the barriers include exam tables, weight scales, and imaging and other diagnostic equipment.
The History of Discrimination in Health Services
Equal protection laws and policies continue to play an important role in combatting discrimination in health, wellness, and prevention. Understanding the history of federal funding -- and the role of the civil rights movement -- in dismantling segregation in health care is critical.
For example, the federal Hill-Burton Act, 42 U.S.C. § 291e(f), enacted in 1944, provided over $100 million per year in direct aid to states for health and hospitals -- and explicitly funded segregated, "separate but equal" services and facilities. The Supreme Court held that separate Black and White schools are inherently unequal and violate the Equal Protection Clause in Brown v. Board of Education in 1954. A federal court of appeals struck down the "separate but equal" provision of the Hill-Burton Act in 1963 in Simkins v. Moses H. Cone Memorial Hospital, ruling in favor of a class that included Black physicians, dentists and patients who were excluded from private white hospitals that received federal funding.
Congress, led by President Lyndon Johnson, passed the Civil Rights Act of 1964. Title VI of the 1964 Act and its regulations prohibit discrimination based on race, color, or national origin in programs or activities that receive federal financial assistance, including health. Congress and President Johnson created Medicare through legislation in 1965. Medicare funding and Title VI have played a vital role in the struggle to end discrimination in health care.
The decisions in Brown and Simkins, and the Civil Rights Act of 1964, were milestones in the decades long struggle for equal justice for all led by the NAACP Legal Defense & Educational Fund, Inc. (LDF), Thurgood Marshall, Martin Luther King, Jr., and the Southern Christian Leadership Conference. Dr. King's I Have a Dream Speech and the March on Washington helped lead to the passage of the Civil Rights Act of 1964.
There are important lessons here. First, civil rights attorneys and public health experts should work together to address health disparities. Second, a health justice movement should draw on civil rights attorneys, public health experts, and grass roots organizing to get the job done. Third, litigation as well as legislation is necessary. Fourth, "policy" prescriptions alone without the force of law are not enough. The Affordable Care Act creates enforceable rights. An Affordable Care "Policy" would not.
Health, Prevention, and Wellness
The World Health Organization defines health as "a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity." In addition, the social determinants of health -- the conditions in which people live, learn, play, pray, work, and age, including the health system -- contribute to health inequities. The WHO definition of health is consistent with the broad view of health in the Affordable Care Act, which includes over 60 provisions geared towards advancing health justice through a broad range of actions, sectors, and actors. Thus, the Act includes increasing physical activity in schools and improving infrastructure as part of its mandate. Prevention and wellness can be as or more important than health care.
Parks and Health
For example, access to parks and recreation is a health justice concern. The National Park Service (NPS) published the report Healthy Parks, Healthy People U.S. (HP/HP Report) in 2011. NPS recognizes that "[p]eople of color and low income populations still face disparities regarding health and access to parks." These disparities adversely impact human health. "In regard to obesity, 36 percent of black and 35 percent of Hispanic high school students nationwide are overweight or obese, while 24 percent of non-Hispanic white high school students suffer from these conditions." NPS's recent 2013 Healthy Parks, Healthy People Science Plan compiles extensive evidence-based social science research that identifies relationships between socio-economic status and participation and access to green space and outdoor recreation.
NPS recently emphasized in its report on the proposed National Recreation Area in the San Gabriel area: "Los Angeles County is one of the most disadvantaged counties in terms of access to parks and open space for children of color and people of color." "[Non-Hispanic] Whites currently have disproportionately greater access to parks and open space, compared to Latinos and African-Americans. These groups are 12-15 times more likely to have less park acreage per capita when compared to [Non Hispanic] Whites." Furthermore, "the communities with the least amount of access to parks and open space tend to have higher rates of childhood diseases related to obesity such as diabetes."
Extensive research by The City Project with GreenInfo Network, and others, support these conclusions, as illustrated by the accompanying maps and demographic analyses. The maps and analyses are relevant both to illustrate disparities in green access and health, and to show the kind of data collection and analyses necessary to address discrimination in health, wellness, and prevention.
Physical Education and Health
The Institute of Medicine (IOM) recently published a major report on requiring physical education and physical activity in school, Educating the Student Body: Taking Physical Activity and Physical Education to School (2013). According to the IOM, education officials should address disparities and ensure all students have equal access to physical education. Physical activity should be considered in all school policy decisions to improve academic performance, health, and development for all children. The federal government should make physical education a core subject.
The City Project is working with the L.A. County Department of Public Health, the teachers' union UTLA (United Teachers of Los Angeles), and community allies to enforce physical education requirements in public schools under federal and state civil rights laws and the state education code, including the Los Angeles Unified School District (LAUSD) and other districts. According to Dr. Robert Ross, President of the California Endowment, this work "is a best practice example for districts across the state to provide a quality education for the children of California."
Compliance and Enforcement
HHS has many tools available to ensure health justice for all through implementation of Section 1557. For example, HHS can guard against discrimination through regulations, health impact assessments, reviews of applications for federal funding, contractual assurances of compliance by recipients, reviews of compliance, investigations of administrative complaints, compulsory self evaluations by recipients, data collection and analyses, and full and fair public participation in the enforcement process. The Department of Justice has coordinating responsibility with HHS.
HHS is charged with issuing regulations to implement Section 1557. The regulations should make clear that discrimination includes intentional discrimination, as well as unjustified and unnecessary discriminatory impacts. The discriminatory impact standard provides a powerful tool to ferret out subtle and structural practices that have demonstrably discriminatory effects. A thoughtless policy can be as unfair as, and functionally equivalent to, intentional discrimination. As a matter of common sense, discriminatory programs or activities should be avoided in favor of those that serve everyone's interests fairly, effectively, and without discrimination.
Access to justice through the courts is also necessary, as evidenced by the history of discrimination above. Section 1557 allows for people -- from everyday residents to private organizations -- to file claims in court, including individual, class, and third party complaints for injunctive and declaratory relief and money damages. Access to justice through the courts is part of the right to petition for the redress of grievances protected under the First Amendment.
A compliance analysis under Section 1557 should include:
- A clear description of what the recipient plans to do
- An analysis of the burdens and benefits for all people
- An analysis of alternatives
- The full and fair inclusion of minority and low-income populations in the decision-making process.
- An implementation plan to address any equity concerns.
The struggle continues. According to a new analysis of census data by the New York Times, the Affordable Care Act will leave out two-thirds of the poor blacks and single mothers, and more than half of the low-wage workers who do not have insurance -- the very kinds of people that the program was intended to help. "Because they live in states largely controlled by Republicans that have declined to participate in an expansion of Medicaid, the medical insurance program for the poor, they are among the eight million Americans who are impoverished, uninsured, and ineligible for help," according to the analysis. Every state in the Deep South except Arkansas has rejected the expansion.
In ruling on the health care law in 2012, the Supreme Court upheld it, but held that states could not be required to expand Medicaid as a condition of continuing to receive existing Medicaid funding. However, equal protection and discrimination were not issues before the Court in that ruling. "The disproportionate impact on poor blacks introduces the prickly issue of race into the already politically charged atmosphere around the health care law. Race was rarely, if ever, mentioned in the state-level debates about the Medicaid expansion. But the issue courses just below the surface, civil rights leaders say, pointing to the pattern of exclusion," according to the Times.
The mainstream health movement needs to work arm in arm with the health justice movement. It is necessary to avoid the risk of going the way of the environmental movement -- with mainstream environmentalists having greater access to power and money, and the needs of low income people and people of color in the environmental justice movement often being marginalized. Health in all policies is not good enough. Simple justice requires health justice in all policies.
*Daphne P. Hsu is a Staff Attorney at The City Project. She works to ensure healthy, livable communities for all.
The City Project submitted public comments to HHS with Anahuak Youth Sports Association; Concerned Citizens of South Central Los Angeles; Latino Coalition for a Healthy California; Social Justice Consultancy; David H. Chae, Sc.D., M.A.,** Assistant Professor, Department of Epidemiology and Biostatistics, University of Maryland, College Park, School of Public Health; Janet Chang, Ph.D.,** Assistant Professor, Department of Psychology, Trinity College; and James F. Sallis, Ph.D.,** Distinguished Professor of Family and Preventive Medicine, Division of Behavioral Medicine, University of California, San Diego, Director, Active Living Research. The Leadership Conference on Civil and Human Rights and the NAACP Legal Defense & Educational Fund, Inc., submitted comments as well. We thank each of them, Dennis Andrulis and Nadia Siddiqui, Texas Health Institute,** National Women's Law Center, and Public Advocates for their cooperation. The views expressed here are our own.
**Institutional affiliation for identification only.
Top: "Celebration of Diversity" mural in Canoga Park by Francisco Letelier, photo courtesy of The Mural Conservancy of Los Angeles