ACA Section 1557 As A Tool For Anti-Racist Health Care

The Affordable Care Act (ACA) has undeniably narrowed racial and ethnic health disparities by reducing the uninsured rate and improving access to care for people of color. Yet, significant gaps persist in access to coverage and high-quality, affordable care. As Congress considers important new programs to help bridge the remaining gaps, the Biden administration can use its existing authority under federal civil rights laws to promote anti-racist health care and insurance.

This post summarizes just some of the health disparities that persist for people of color even after the ACA, provides a brief history of how Title VI of the Civil Rights Act of 1964 has (and has not) helped address these disparities, and explains how Section 1557 of the ACA builds on Title VI. We then highlight some of the ways that the Office for Civil Rights (OCR) within the Department of Health and Human Services (HHS) could further use these laws as a tool to reduce health disparities and advance racial equity.

Long-Standing, Pervasive Health Disparities For People Of Color

As has been frequently noted, COVID-19 exposed not only the flaws in the US health care system but also the structural racism that leads to differences in access, treatment, and outcomes for Black, Indigenous, and Latino people, and other people of color. An increasing number of public health and medical institutions, including the American Public Health Association, have recognized that racism is a social determinant of health that is frequently the driving factor underlying inequities in health.

In short, racial disparities are not just an unfortunate consequence of health care inequities; racism is, in fact, a driver of disparities and the root cause of many inequities. For people with intersecting identities—such as people of color who are also LGBTQ people, people with disabilities, immigrants, people with limited English proficiency, and women—sexism, xenophobia, homophobia, transphobia, and other forms of oppression only compound these problems in health care and elsewhere.

People of color disproportionately comprise the uninsured. Access to private coverage has historically been limited by discriminatory insurer practices, lower-wage work for which job-based coverage is frequently not offered, and the high cost of private coverage. At the same time, access to public coverage is limited. The 12 states that have not expanded eligibility for Medicaid to low-income adults collectively have statistically higher populations of people of color, and undocumented people are generally not eligible for public coverage programs.

Notably, the uninsured are more likely to report financial hardship. A recent study from the Journal of American Medical Association found that people in nonexpansion states have more medical debt. The uninsured are also more likely to have lower credit ratings and depleted savings.

Beyond access to coverage, people of color are more likely to receive poorer-quality care, even when all other factors—besides race—are controlled. Throughout the pandemic, Black people reported that they were turned away from testing or that their health concerns were not addressed. Some White providers hold biases toward Latino and African American patients, and people of color are more likely to have shorter clinical visits. Women generally are more likely to have their pain ignored, and there is an even higher likelihood that Black women report feeling ignored during a health care visit (a driving cause for Black and Indigenous maternal health disparities). Doctors are less likely to counsel patients of color to avoid risk factors for heart disease. Conversely, Black people have higher rates of services associated with worse health outcomes, such as cesarean sections and amputations.

Culturally and clinically competent care could help narrow these disparities. But gaps remain there, too. Health plan provider networks may have a limited number of providers of color; they may also offer less access to in-network specialists that treat conditions communities of color are most likely to contract, such as sickle cell disease and lupus. Even more, Black and Latino communities are more likely to be in primary care provider shortage areas, and hospitals located in communities of color have been accused of avoiding patients from the community in favor of Whiter, wealthier patients. Providers are also less likely to accept patients with Medicaid, which impacts Blacks, Latinos, and Indigenous people the most, as these communities are disproportionately covered by the Medicaid program.

Given these gaps, people of color are unsurprisingly less likely than White people to have a usual source of care, even when controlling for insurance, income, and age. More importantly, these and other structural barriers lead to people of color frequently having worse health and mortality outcomes, which has implications for the physical and emotional well-being not only of these individuals and their families but for all Americans.

Title VI: A Mixed Record Of Civil Rights In Health Care

Racial and ethnic health disparities persist even though Title VI has long prohibited discrimination based on race, color, or national origin in health care programs or other activities that receive federal funds or other federal financial assistance. Each federal agency is responsible for enforcing Title VI requirements with respect to their own recipients. Recipients of federal financial assistance from HHS may include hospitals, health clinics, nursing homes, long-term care facilities, alcohol and drug treatment facilities, health research programs, almost all physicians, and Medicaid and Medicare programs, among others. Entities found to be in violation of Title VI by HHS could lose federal health care funding or the matter could be referred to the Department of Justice for litigation. Individuals who have experienced discrimination in health settings may also bring civil suits in federal court for some claims under Title VI.

HHS and other federal agencies interpret Title VI to prohibit both disparate treatment discrimination (that is, intentional discrimination based on actual or perceived race, color, or national origin relative to others in a similar situation) and disparate impact discrimination (that is, a policy or action that has a disproportionate adverse impact on individuals of a certain race, color, or national origin, regardless of intent). HHS OCR can take administrative enforcement action for both types of discrimination.

Title VI administrative enforcement and litigation have been powerful tools to advance civil rights in health care. Title VI, alongside the creation of Medicare, helped desegregate medical facilities in the 20th century and has made clear that facilities cannot have admitting policies for staff and patients that overtly distinguish among races. Illustratively, the integration of health care facilities, following the passage of Title VI, helped save the lives of thousands of Black infants.

This progress notwithstanding, the ways in which racial discrimination manifests in the health care context has changed in the nearly 60 years since Title VI was enacted. In many (but certainly not all) ways, once-blatant racism in both policies and practice gave way to more subtle, seemingly neutral policies that disproportionately impact people of color. Current de facto segregation perpetuates the very disparities created by an era of de jure segregation.

Limitations Of Title VI

Title VI is an important tool to address the pervasive policies and practices that disproportionately harm people of color in health care settings. But by itself, Title VI has not been fully effective in addressing health care discrimination in a way that overcomes the nation’s legacy of de jure segregation and systemic discrimination in health care. There are a variety of reasons for this.

Private Enforcement Applies To Intentional Discrimination Only

First, in 2001, the US Supreme Court limited the scope of Title VI’s private right of action to only cases of intentional discrimination (but not disparate impact discrimination). As a result, private parties who wish to challenge harmful policies or practices that have a discriminatory effect on communities of color, but who cannot show that such discrimination was intentional, cannot sue in court or obtain monetary compensation. Instead, they are limited to administrative remedies, such as filing a complaint with HHS OCR, which can then launch an investigation and threaten to withhold federal funding. While these remedies can still be impactful, HHS OCR lacks staff capacity and has limited financial resources.

It can also be difficult for complainants to satisfy the burden of proof requirement for disparate impact discrimination. Even where a disparate impact is present, a health provider or insurer may be able to justify a facially neutral policy that has a discriminatory effect by showing that the policy furthers legitimate ends and that no less discriminatory alternative exists. For instance, it remains unclear the extent to which economic rationales—such as a hospital that relocates from an underserved community to a wealthier community for business or economic reasons—can justify policies with an adverse impact on certain communities.

No Clear Affirmative Obligations To Combat Racial Discrimination

Second, HHS has issued guidance interpreting Title VI’s ban on discrimination based on national origin to impose certain affirmative obligations on covered entities. This guidance outlines the steps that covered entities should take to ensure that those with limited English proficiency can fully participate in and benefit from federal programs. But HHS has not issued comparable guidance on affirmative obligations or prescriptive requirements to prevent discrimination based on race and color.

Gaps As Applied To Medicare Part B

Third, Title VI has been interpreted by HHS to not apply to providers whose sole source of federal assistance is Medicare Part B payments for physician and other outpatient services. This is in part because Title VI explicitly excludes a “contract of insurance” from its definition of federal financial assistance. Because Medicare Part B operated largely as indemnity insurance at the time of HHS’s interpretation (that is, a program of payment to direct beneficiaries), HHS concluded that receipt of Medicare Part B payments alone did not make a physician subject to Title VI. Title VI does apply if the physician receives other federal payments.

Does Not Reach Intersectional Discrimination

Fourth, Title VI bars discrimination based on race, color, and national origin and does not extend to other protected bases (such as sex). As such, Title VI alone has not historically been used to address the full range of potential intersectional claims. Even though there are other legal protections based on other identities (for instance, Title IX of the Education Amendments prohibits discrimination on the basis of sex in education programs and activities), these protections frequently did not extend to health care, and the separate legal protections have forced litigants to decide what part of their identity was being discriminated against.

As legal scholar Kimberlé Crenshaw has long observed, antidiscrimination laws frequently do not account for an individual’s intersecting identities. For example, she notes that the idea of sex discrimination has long centered around claims made by White women while race discrimination has focused on claims from men of color. Claims made under Title VI are thus unable to address overlapping discrimination and force courts and those aggrieved to parse whether a Black woman experiences discrimination based on sex or race—rather than both—hindering justice in the meantime.

How Section 1557 Builds On Title VI

Section 1557 of the ACA, the law’s primary nondiscrimination provision, builds upon and extends Title VI and other federal civil rights laws to additional health programs and activities. Under Section 1557, an individual shall not—on the basis of race, color, national origin, age, disability, or sex—“be excluded from participation in, be denied the benefits of, or be subjected to discrimination under, any health program or activity, any part of which is receiving Federal financial assistance, including credits, subsidies, or contracts of insurance, or under any program or activity that is administered by an Executive Agency or any entity established under [Title I of the ACA].” Section 1557 went into effect on March 23, 2010, the day the ACA was signed into law.

The scope of Section 1557 has been debated and litigated. Different administrations have taken different positions in an Obama-era rule from 2016 and a Trump-era rule from 2020. But what does Section 1557 mean vis-a-vis Title VI? 

An Independent, Health-Specific Basis To Address Intersectional Discrimination

First, Section 1557 does more than merely incorporate Title VI. If Congress believed that Title VI already provided adequate protections against health care discrimination, the analogous part of Section 1557 would have proven unnecessary. Rather, Section 1557 provides an independent basis for protections from discrimination based on race, color, national origin, age, disability, and sex.

While the statute refers to Title VI and other existing federal civil rights laws, at least one court has held that Section 1557 created a new single health-specific, anti-discrimination cause of action that does not vary based on the patient’s protected class (that is, race, sex, disability, or age). As such, individuals may be able to sue under Section 1557 and claim disparate impact discrimination based on race even though the courts have limited the ability to do so under Title VI. This also presents an opportunity to better address broader intersectional claims that are equally important to people of color. While the statute incorporates separate existing civil rights laws, it does so collectively in a single provision that recognizes the possibility that someone—say, a Black LGBTQ woman with a disability—could face discrimination based on race, sex, and disability.

HHS OCR previously interpreted Section 1557 in this way and confirmed that the law extends to intersectional discrimination that might affect people who are part of multiple protected classes. In the Obama-era rule, federal officials also confirmed the availability of compensatory damages and a private right of action for claims of disparate impact discrimination regardless of the basis for the underlying claim (including Title VI). A Trump-era rule rescinded these provisions.

Extends Title VI Protections To Health Insurance

Second, Section 1557 extends the scope of Title VI protections. Title VI applies to “any program or activity receiving Federal financial assistance,” including health programs. Section 1557 explicitly extends these protections to health programs or activities receiving “credits, subsidies, or contracts of insurance,” including federally subsidized health insurance programs (such as insurers that offer Marketplace coverage) and federally administered health programs such as the Federal Employees Health Benefits Program and health programs offered by the Department of Veterans Affairs.

Despite this clear statutory language, the Obama and Trump administrations adopted dueling interpretations over the scope of Section 1557. The Obama administration previously acknowledged that Section 1557 applies broadly to all health insurance plans offered by an insurer that received federal funding, and to all HHS-operated programs. In rewriting that rule, the Trump administration purported to restrict the scope of Section 1557 by exempting most health insurers (except for ACA Marketplace insurers or Medicaid programs) and excluding all of HHS’s own health programs except for those administered or established under Title I of the ACA.

Using Title VI And Section 1557 To Advance Racial Justice And Health Equity

Even civil rights laws as powerful as Title VI and Section 1557 cannot solve racial discrimination and injustice on their own. But federal officials can and should further leverage both laws to reduce health disparities and advance racial justice.

The Biden administration has already indicated that it will undertake new rulemaking on Section 1557 and has committed to advancing racial equity, protecting LGBTQ people from discrimination, and recognizing intersectional and overlapping forms of discrimination. Given this commitment, we expect the administration to reverse many, if not all, of the Trump-era changes to Section 1557’s implementing regulations. Many of these changes harmed or could have disproportionately harmed people of color and have been heavily criticized or enjoined from taking effect by federal courts. These changes should be reconsidered and rescinded.

But federal officials have an opportunity to go beyond those changes and further use Section 1557 to advance racial equity. We have identified the following non-exhaustive list of recommendations for how HHS OCR could do so, with a focus on discrimination based on race and color. (Similar recommendations could be made for protections based on national origin, sex, disability, and age, but are beyond the scope of this analysis.)

Clarify Distinctions Between Title VI And Section 1557

As discussed above, Section 1557 incorporates, but offers broader protections than, Title VI. HHS OCR should confirm this broader scope and again affirm that individuals can pursue private litigation for claims of disparate impact discrimination based on race, color, and national origin under Section 1557. In doing so, HHS OCR could discuss the extent to which health insurers, providers, and other covered entities cannot rely solely upon an economic or business justification for differences in treatment. Such an interpretation would be consistent with the overall structure and goals of the ACA, which adopted a series of reforms to protect consumers with greater health needs who are perceived to be more costly (by, for instance, preventing insurers and plans from limiting coverage for those with preexisting conditions).

HHS OCR should also reconsider its interpretation of “federal financial assistance” to extend Section 1557 and other civil rights protections equally to providers that receive Medicare Part B payments. In enacting Section 1557, Congress explicitly included “contracts of insurance,” filling this gap from Title VI and extending civil rights protections to plan provider networks. Medicare Part B also now operates as a direct payer (rather than indemnity insurance). Despite these developments, the Obama-era rule maintained the exemption for Part B payments, reasoning that almost all physicians will already be covered by Section 1557 (because they receive some other form of federal financial assistance). Extending Section 1557 to providers receiving only Part B payments would be consistent with calls for anti-racism voiced by many medical associations and help provide clarity as to how these protections apply to health care providers.

Identify Examples Of Discriminatory Practices

HHS OCR should clarify its expectations for how insurers and providers should deliver anti-racist health care by outlining specific instances of discrimination that violate the prohibition against racial discrimination. Examples could include prohibiting discriminatory benefit designs that target conditions that disproportionately affect communities of color (such as lupus, sickle cell disease, and so forth) or categorical exclusions for “illegal activity” that have been used to deny care to gunshot victims. The latter could have a disproportionate impact on Black and Latino people who live in heavily policed areas, even if the individual seeking care is never charged with an actual crime.  

HHS OCR should also focus on discriminatory plan network design. While federal officials declined to adopt network adequacy standards in the Obama-era rule, new guidance could affirm that a plan network that does not include or enable access to specialists, such as comprehensive sickle cell centers or hospitals, that treat conditions that disproportionately affect communities of color could be viewed as violating Section 1557. Insurers and plans could be barred from perpetuating redlining and the exclusion of patients of color and bedrock community providers by limiting networks (that is, offering low reimbursement rates to essential community providers such as Title X health centers and Ryan White clinics) or offering coverage in only certain geographic service areas.

Beyond identifying prohibited actions, OCR should provide guidance regarding affirmative obligations that entities must take to comply with Section 1557 and Title VI. There is a long history of offering such guidance under federal civil rights laws. For instance, federal agencies, including HHS OCR, have issued guidance regarding meaningful access (for example, oral interpreting and written translation) for individuals with limited English proficiency. Similar guidance on affirmative obligations should also be offered for discrimination on the basis of race and color. HHS OCR should, for instance, require covered entities to show that any algorithms that they rely upon—such as medical necessity review algorithms and clinical support tools—are not biased or discriminatory against people of color.

Require The Collection And Reporting Of Demographic Data

Another affirmative obligation should be to require covered entities to collect and report comprehensive, disaggregated demographic data. HHS could require data collection and reporting pursuant to its authority to ensure compliance with federal civil rights law, including Section 1557, and Section 4302 of the ACA. The data could also help HHS OCR identify, understand, and act upon intersectional claims of discrimination.

Full and proper enforcement of civil rights protections depends on the collection of comprehensive data by race and ethnicity (among other factors). Without full data (on issues such as claims denials, enrollment, complaints, or outcomes), entities and policy makers simply cannot assess systemic biases and act as needed.

Furthermore, given the Biden administration’s focus on equity and competition, HHS OCR, with the Department of Justice, should play a central role in illuminating and assessing the civil rights effects of health-related mergers and acquisitions. Federal regulators should explicitly account for the impact of any proposed industry changes on access to health care and insurance by people of color.

Solicit Complaints, Conduct Investigations, And Publicize The Results

HHS OCR should also leverage its authority by informing individuals of their rights (and covered entities of their responsibilities); soliciting complaints about discrimination on the basis of race; conducting investigations and compliance reviews; and publicizing the results. HHS OCR can do this under Title VI or Section 1557 and perform these actions outside of the context of high-profile rulemaking or other regulatory changes.

Drawing from complaints and enforcement action, HHS OCR has publicly identified examples of prohibited discrimination with respect to sex, disability, and national origin. However, the agency does not appear to have similar dedicated resources for discrimination based on race, and far fewer public enforcement actions focus on race-based discrimination. Additional examples of investigations and enforcement actions would help ensure that covered entities are aware of their obligation to provide anti-racist health care. HHS OCR should also summarize these enforcement actions and other efforts in an annual report that documents the number of complaints filed, investigated, and resolved.

One high priority should be helping to narrow maternal health disparities. This could include working with community partners to solicit complaints about discriminatory treatment of Black or Indigenous pregnant people, collecting data from hospitals on maternal health outcomes to track patterns and identify potential disparate impact discrimination, and conducting compliance reviews or targeted investigations or otherwise taking enforcement action. To encourage compliance by other covered entities, HHS OCR should then publicize the results of these efforts by making settlement agreements public. A compliance review initiative focused on maternal health disparities could be especially valuable and timely—and could be modeled after prior efforts (such as OCR’s national HIV/AIDS compliance review).

Summing Up

The pervasiveness of racism and unintentional bias has perplexed many judges and policy makers as to how to provide justice or advance a solution. As legal scholar Dayna Bowen Matthews has written, “The prevailing narrative about unconscious racism wrongly assumes its inevitability…jurists…have struggled with the idea of holding one responsible for actions they do not intend to commit or injuries they did not intend to cause.” Pervasive, multidimensional discrimination means that no single law or intervention is a sufficient response, but that does not mean the law cannot help remedy individual and systemic discrimination.

Recent calls and proposals for voluntary implicit bias and anti-racist training, improved data collection, and improved coverage standards are encouraging. And providers and health centers, particularly those serving underserved communities, must have the training and resources needed before any accountability measures are taken to avoid inadvertently harming communities of color. However, none of these efforts will be effective without accountability. Section 1557 could be a significant tool to this end if federal officials implement clear accountability measures and fully enforce the law.