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Excerpted From: Majesta-Doré Legnini, An Unfulfilled Promise: Section 1557's Failure to Effectively Confront Discrimination in Healthcare, 28 William and Mary Journal of Race, Gender, and Social Justice 487 (Winter, 2022) (229 Footnotes) (Full Document)
The Affordable Care Act (ACA) brought many changes to healthcare in the United States. Not only enabling over twenty million more people to access health insurance in 2016, the ACA guaranteed coverage for preventive services, expanded coverage for young adults, and set new expectations of transparency. In addition to these groundbreaking reforms, the ACA brought an opportunity to combat health discrimination and the resulting health disparities with new force in Section 1557. Section 1557 states that “an individual shall not ... 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” on the basis of race, color, national origin, sex, disability, or age. Modeled after the prohibition against discrimination in Title VI of the Civil Rights Act of 1964, this nondiscrimination clause extended protection to four protected classes in a single swoop. But the reality of Section 1557's impact on healthcare discrimination has been underwhelming.
The statute provided the opportunity to consider the healthcare experiences of four protected classes in one action. It appeared to recognize the complex reality of healthcare and human nature: that a single person can occupy all four of those protected classes at once and be targeted for any and all of those identities in a given healthcare encounter. Section 1557 has failed to successfully address these kinds of discrimination, though. Key to understanding the way Section 1557 has failed in fulfilling its goal of nondiscrimination in healthcare is understanding the principles behind identity and the power principles at play when marginalized communities experience discrimination.
Intersectionality guides understanding the whole person and the privileges and challenges with which they live. It is a powerful tool for interpreting human dynamics and is vital to understanding the social structures behind health disparity data. Sociologist and lawyer, Kimberlé Crenshaw, derived the theory from dynamic Black, Indigenous, and “third-world” feminist and queer theories to foster a “post-colonial” way of thinking about identity and society. Rather than merely considering singular characteristics, such as one's race, sex, or socioeconomic status, intersectionality recognizes the composite result of all such factors. Intersectionality allows a level of nuanced discussion that is often left out of conversations on injustice.
Crenshaw's theory recognizes that the experience of a white woman is different from the experience of a Black woman, and that where a white woman faces gender discrimination, she does not also face race-based discrimination, and a Black woman likely faces both. Intersectionality embraces a person's whole experience and limits population homogenization. The theory further embraces a more complex understanding of the balance of power within society itself. Social structures distribute power and our interactions with those structures determine our experiences. These social structures could be as near as the make-up of the family or as distant as the laws passed by governments.
If those institutions foster discrimination, the consequences will pervade the whole society as power gets distributed across those who are bound to that institution. Each person's composite identity determines how severely a discriminatory policy will impact their lives and that power dynamic determines future policies. Although recent years have brought more awareness to cultural differences and attempted to reduce barriers, the result has often been a shallow rise of cultural competency, rather than full-throttle attempts to address the deep-seated institutional issues that perpetuate discrimination in the long term. For example, the 2019 National Healthcare Quality and Disparities Report provides important insight into the disparities between races in areas such as patient safety, effectiveness of care, and patient-centered care, but it lacks the deeper analysis of how those health disparities reflect larger social inequality. The report includes some measures that impact women and other vulnerable populations, and looks at each care measure based on geography and income. It remains unidimensional; it fails to look at how each of these factors overlay with the others to reflect the shameful and compounding realities of subjugation and oppression in this country which perpetuate these health disparities.
Although Section 1557 does afford some additional legal protection and remedy for those who experience discrimination in healthcare, the recent COVID-19 pandemic demonstrates how much work remains in healthcare reform to truly combat health discrimination and disparities. Both implicit and explicit discrimination pervade the pandemic experience; from the infection and death rates, to the day-to-day encounters of patients whose doctors refuse to believe them, even to the ways that states across the country prepared for crisis care. Continuing on in a system that perpetually fails to recognize and actively uproot discrimination in healthcare disregards the depth of disparity that multiple marginalized patients face.
Part I considers how Section 1557 has been interpreted since it passed in 2010. First without supporting regulations as courts attempted to piece together the statutory intent, then with regulations that changed between the Obama and Trump Administrations. Part II discusses the need for a single healthcare discrimination standard, and how an intersectional approach is the most appropriate way to combat discrimination that creates poorer health outcomes for marginalized patients in health systems across the United States. Finally, Part III discusses discrimination during the coronavirus pandemic. Addressing both state initiatives and doctor-patient interactions to demonstrate the inadequacy of the current system, this section concludes that any further efforts toward healthcare reform must reach much further than Section 1557.
[. . .]
The Affordable Care Act took on comprehensive healthcare reform in the United States. With it, many health measures have improved, including access, guarantees of preventive health benefits, and better access to care for young adults. Each one of these improvements has contributed to the overall improvement of health disparity in the United States. But ten years from passage and six years since implementation, the health disparities continue, and they are shocking.
The promise of accountability for differential treatment between providers and patients with marginalized identities has yet to be fulfilled. Section 1557 is but one step closer to the greater structural reform necessary to begin recognizing the depth of discrimination's impact on healthcare provision. No person's life experience can be captured with a one-word identity label. How each person interacts with the power structures surrounding them is dependent upon the different oppressions that person has had to endure throughout the different stages of their life. Rather than placing an expectation on patients to only combat intentional discrimination, the model must evolve to recognize disparate impact discrimination as well. These disparately impacted patients are complex people who deserve to make their whole case, and show how it is the harms in response to the combination identities that make their experience 'different’ that deserves remedy.
To do this, there must be a single, intersectional health discrimination standard. Such a standard will force health providers and systems to address deeper issues in diagnosis and treatment, and incentivize greater institutional change to move beyond their mere superficial and passive acknowledgment of 'nondiscrimination’, toward a more active 'antidiscrimination.’ It is only when the legal structure established to enforce against these discriminatory harms reflects upon the ways in which it itself perpetuates discrimination that we can achieve successful change. In healthcare, that begins with recognizing that Section 1557's expanded coverage of the pre-existing nondiscrimination statutes to healthcare arenas is necessary but by no means sufficient to tackle the shambolic attempts to combat health disparities in the United States. Looking no further than the outright devastation that the novel coronavirus has wrought on marginalized communities during 2020 and beyond, it is clear that shallow acknowledgment can no longer stand in the place of active accountability structures and intersectional progress.
Majesta-Doré is a JD candidate at William & Mary Law School and Editor-in-Chief of Volume 28 of the Journal of Race, Gender & Social Justice.
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