Health Care Civil Rights: Implementing Section 1557 of the Affordable Care Act

• In Event: Health Care Rights and Mental Health Policy in the United States

Abstract

Identity matters for living and dying in America today. Persistent health disparities sort our citizens into hierarchies by race, gender, transgender status, and sexual orientation, among other factors. Poorer health and shorter lives mean that some groups cannot thrive, put their life plans into action, and function as fully as others in our democratic society. The coronavirus threat has laid these inequalities bare, yet we have not solved this problem. Discrimination has long been thought to be a driver of these health-based inequalities.

But, there is a paradox in our American response to these dramatic health inequalities. We are an individualistic, rights-based society, yet unlike many other countries, we have very few health rights. Instead of a right to health that is provisioning, that is, that gives health care to people, we have a right to health care civil rights. Section 1557 of the Affordable Care Act (ACA) is the non-discrimination clause that governs health care provision and healthcare settings in the US, tied to federal funding. Health care civil rights are civil rights that apply to healthcare settings, protecting patients from discrimination based on race, sex, age, national origin, and disability.
Section 1557 provides that “an individual shall not, on the ground prohibited under title VI of the Civil Rights Act of 1964, title IX of the Education Amendments of 1972, the Age Discrimination Act of 1975, or section 794 of title 29, 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.”

Its unusual text, not listing protected categories but simply referencing other laws, was designed to show that these healthcare rights are grounded in pre-existing laws, facilitating its passage in the difficult political moment of ACA passage in 2010. It worked; no one noticed the clause much at the time. Non-discrimination provisions already reached healthcare settings under race, age, and disability non-discrimination laws, but sex discrimination was newly covered with the reference to Title IX. Gender identity discrimination as sex discrimination in health care has since become an explosive political and legal issue, prompting litigation, multiple sets of 1557 regulations between the Obama, Trump, and Biden administrations, and legislation across the states banning gender affirming health care even as the Biden Department of Health and Human Services insists that denying care to trans people based on gender identity is illegal discrimination.

In this paper, I explain what rights mean affirmatively on the ground in hospital settings as organizations implement health care civil rights, taking gender identity discrimination as the primary focus. I argue that healthcare settings are simultaneously suffused with ideas and language about rights but unable to effectively implement substantive rights protections. My prior research has shown how discrimination and rights often fail to be recognized in healthcare; this paper extends that analysis to the meaning of rights when they are recognized. This “saturation plus failure” of rights comes from the complex regulation of healthcare settings (privacy rights, patient rights, DEI initiatives, accreditation concerns, grievance management, patient satisfaction scores) but with goals that align poorly with anti-discrimination principles (performing health services under insurance reimbursement rather than affirming identities or granting needed resources). Data comes from health civil rights complaints and interviews with 64 civil rights officers in healthcare organizations in 4 states, 15 national leaders and policymakers who have guided our current health civil rights laws, and 24 transgender or non-binary people as well as several doctors and hospital administrators.

This research connects well to the themes of misinformation and disinformation. There has been a groundswell of misinformation and disinformation about transgender people, especially youth, and their health care needs, driven by the Republican Party nationwide but particularly in Texas and Florida. Boston Children's Hospital got a bomb threat. A federal judge wrote that Section 1557 would force physicians to perform transition surgery on infants, despite the fact that genital surgeries are not done on minors, let alone infants, religious institutions and providers are protected by multiple federal conscience laws already, and no one can be forced to provide care outside one’s specialty. (He did not consider intersex infants, often “corrected” genitally without their consent.) Section 1557 went from being a little-noticed provision to the center of the culture wars a dozen years later. This paper is part of a book project explaining how and why, and diagnosing a way forward out of this dysfunctional and combative use of rights that could actually improve America’s health.

Author

• Anna Kirkland, University of Michigan-Ann Arbor