Civil Rights, Health Care, and the Struggle for the Soul of Medicine

For the third time in eight years, the United States Department of Health and Human Services, the federal agency principally charged by Congress with setting and enforcing civil rights policy in health care, has issued regulations governing Section 1557 of the Affordable Care Act (ACA).   A watershed in health care and civil rights, Section 1557 has experienced an exceptionally rocky implementation. Now the latest implementing rules face a new round of legal challenges, once again linked to their protections for health care for transgender people.  (The Supreme Court has now agreed to hear next term the Biden administration’s separate, direct constitutional challenge to Tennessee’s ban on transgender care for minors.) 

The transgender cases may seem specific to a distinct population, but the issue they raise goes far beyond the specifics of transgender care: Whether individuals protected by 1557 have a right to health care free of discrimination. Thus, while the current fight is over care for transgender people, the stakes transcend any condition or diagnosis. Raising the stakes still further, this battle is being waged  in the aftermath of the Supreme Court’s decision in Loper Bright Enterprises v Raimondo, which ended judicial deference to agency interpretation of laws, even when reasonable and grounded in evidence, as is the case with the agency’s decision to define the obligation not to discriminate in medical care on the basis of sex to include sexual orientation and gender identity.

Section 1557, an outgrowth of prior narrower civil rights laws, establishes a broad nondiscrimination framework aimed at barring health care discrimination based on race, color, national origin, age, disability, and sex. This framework not only extends the reach of older civil rights laws to include protections against sex discrimination but importantly also creates a health care civil rights framework broad enough to encompass today’s vast and complex health care system. To achieve this breadth, the statute applies to any entity participating in or administering federally funded health care programs. As such, 1557 covers all public and private health care actors, from the federal and state agencies that administer programs to public and private corporations that insure, administer, or furnish health care, clinics and Medicare-participating physicians’ offices, and research institutions. Furthermore, the law expands federal financial assistance to include “contracts of insurance,” thereby reaching insurers.  Finally, given the blurred lines of massive corporations engaged in multiple business lines, 1557 applies to a corporation in its entirety if “any part” of its business receives federal funding.

The current tensions around the 1557 rules are a continuation of the fraught history of health care and civil rights, whose battles have taken two basic forms: suits brought by private individuals claiming both intentional discrimination and facially neutral practices that result in serious disparities; and challenges brought by covered entities against federal enforcement efforts. Under 1557, individuals have challenged the arbitrary denial of medically necessary care. The transgender cases are structurally the same as those made under related civil rights laws by people living with disabilities ranging from serious and chronic disabling conditions to HIV/AIDS. Many of these earlier cases reflect the same claim of intentional discrimination found in the transgender cases. In other words, health care civil rights cases have frequently involved the deliberate and willful denial of equal treatment found in the transgender cases, some with evidence in the record of barely concealed revulsion.

Thus, far from being legal unicorns, the 1557 transgender cases, whether filed by individuals against those who discriminate or by covered entities opposed to nondiscrimination policies, are part of a long tradition of health care and civil rights cases grounded in bias and prejudice and a denial of the government’s power to prohibit such discrimination. And, as before, opponents of civil rights laws have further argued that Congress itself lacks the constitutional power to insist on nondiscriminatory conduct as a condition of federal spending.  

In short, the transgender cases exhibit the same types of conduct seen in generations of health care civil rights disputes involving deliberate and intentional denial of equal opportunity to participate in or benefit from health care.

The newest round of 1557 cases raises two types of issues.

Judicial usurpation of civil rights policymaking.  As Loper Bright underscores, the transgender cases come at a particularly momentous time. The judiciary is populated by a new, emboldened generation of judges now empowered to profoundly limit the power of both Congress and the federal agencies. Furthermore, the current target of discrimination (transgender people) represents a tragic and convenient focus on which to play out these ideologies, as evidenced by hate laws in dozens of states targeting transgender people. Loper Bright has now greenlighted the courts to overturn even well-reasoned agency policies such as the one at issue here. Decisions from the Court over the past 20 years suggest that laws protecting public health and welfare face an especially rocky future.

By its very nature, 1557 had to be drafted broadly. The task the law assigns to HHS is to create a sensible but meaningful civil rights framework for a health care system as complex as the American system. This task in turn demands extensive fact-finding and considerable agency expertise. The 1557 rules accomplish this—not only for transgender people but for all classes of people whom 1557 protects against unlawful discrimination. Despite their complexity, the rules can be summed up as a major effort to design a body of regulatory law that will best promote medically appropriate health care for all protected groups. If the courts vacate its protections for transgender people, no population is safe. The future could be a world of the type of discriminatory treatment long experienced by people with disabilities, ranging from coverage exclusions to  the same type of segregation, isolation, and demeaning treatment experienced by transgender people. The transgender protections rest on the same underlying civil rights theories as those used in disability discrimination cases.

A fundamental threat to the integrity of health care itself. The transgender cases represent an existential threat to professional judgment—the heart of medicine. Again, this theme is not new. Children and adults living with disabilities have long been subject to the types of bias now in evidence in the transgender cases.  Similar cases involving allegations of systematic denial of appropriate care has been documented in cases involving discrimination based on race, including kidney transplants for Black patients awaiting care and care for Black women facing maternity crises. People with disabilities have long been cut off from appropriate care—a reality no different from what faces transgender people denied access to care because of outright discrimination. Practices by insurers and health care providers that completely disregard evidence and reasonable medical judgment in favor of prejudiced views about who is worthy are nothing new; they simply have found a new target in transgender people. But if the insistence on reasonable medical care fails for one protected class, all protected classes become vulnerable.

Whether access to medically appropriate care for transgender people will survive the current legal onslaught is not the question; rather, it is whether civil rights and health care will survive, period.

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