No one should have to fear discrimination when seeking out health care
Last Friday afternoon, the Trump administration released an extremely harmful final rule eliminating anti-discrimination protections in health care. This rule rolls back many protections but is especially harmful to people who are transgender or nonbinary, people who have terminated a pregnancy in the past or are seeking to do so, and people who speak a language other than English.
Before describing this rule change in more detail, let’s be clear: No one should have to fear discrimination when seeking out health care, and the rule change opens up the doors to discrimination against people for whom accessing care is often already challenging.
The rule is especially cruel when considering its release on the fourth anniversary of the Pulse nightclub shooting, during a pandemic that is disproportionately impacting Black, Latinx, and Native communities, and during nationwide protests against systemic racism, including the murders of Black trans women.
Background of Section 1557 Rules
To begin, Katie Keith, an expert on the Affordable Care Act (ACA), wrote a blog for Health Affairs, HHS Strips Gender Identity, Sex Stereotyping, Language Access Protections From ACA Anti-Discrimination Rule, that is incredibly helpful in describing the rule change. I would highly suggest taking a look at her explanation of the rule change, as it was instrumental in my understanding of the changes and their impacts and my ability to put together the explanation below.
The ACA includes a specific nondiscrimination section, Section 1557. This section was seen as a huge advancement for health equity and reducing disparities. Section 1557 broadly bans discrimination on the basis of race, color, sex, national origin, and disability in health programs and activities. By incorporating other civil rights laws — specifically Title VI, Title IX, the Age Discrimination Act, and Section 504 of the Rehabilitation Act — Section 1557 brings the protections of existing civil rights laws into the health care context. It is also the first federal law to broadly restrict sex discrimination in the health care field.
In 2016, the Office of Civil Rights (OCR) released a final rule on Section 1557, spelling out further the protections provided by the section. The 2016 rule specified that discrimination “on the basis of sex” included discrimination based on gender identity, which was defined as “an individual’s internal sense of gender, which may be male, female, neither, or a combination of male and female” and provided a list of examples of discriminatory practices and protections against coverage exclusions for trans patients. It also included language against discrimination based on sex stereotyping, which can often result in discrimination against LGBTQIA+ individuals. The 2016 rule also included in the definition of sex discrimination, discrimination based on pregnancy status, including “termination of pregnancy.”
Additionally, the 2016 rule also included strong notice provisions including those for individuals with limited English proficiency. Specifically, the rule required entities subject to the rule to post notices and include significant communications information about nondiscrimination protections and the availability of timely and free language assistance services. The rule also required that taglines had to be used in the top 15 languages other than English in that state.
New Rule Provides a License to Discriminate
The new rule provides a license to discriminate, especially against individuals who are trans or nonbinary, those who have terminated a pregnancy in the past or seek to do so, and those who need information in languages other than English. This is a dramatic shift in the government’s interpretation of the rule and a major regression in the fight for health equity.
The new rule eliminates the 2016 rule’s definitions section, including the definitions of sex discrimination that included gender identity and sex stereotypes. It also eliminates the list of examples of discriminatory practices. It also excludes “termination of pregnancy” from under protections against sex discrimination.
It is clear from the rule that the OCR’s interpretation of sex is antiquated, discriminatory, and does not encompass protections for trans or nonbinary individuals. Trans and nonbinary individuals already face disproportionate challenges to accessing needed health care, including challenges in finding a provider with whom they feel safe and comfortable and obtaining the right treatment, whether that is gender-affirming care or other types of care. This rule creates even greater barriers by allowing for discrimination, treatment denials, and benefits packages that do not cover the treatment that people need, including gender-affirming care.
Additionally, by eliminating “termination of pregnancy,” the rule allows for individuals who have terminated a pregnancy in the past or seek to do so to be discriminated against for their private health care decisions, including based on religious or moral objections of providers.
Lastly, the new rule eliminates the 2016 rule’s notice requirements. No longer are entities subject to the rule required to provide notice of patients’ rights against nondiscrimination or taglines in the 15 most prevalent languages. This change is being framed as a way to reduce the burden and cost to providers and on the system. What this really does is shift the burden to patients who already have challenges in navigating a complex health system, including patients who need materials in languages other than English.
All in all, this rule is harmful and a huge step in the wrong direction. No one should have to worry about being discriminated against or denied care because of who they are. Our country’s focus should be expanding access to coverage, reducing inequities, and treating all individuals seeking care with dignity and respect. We should not be erecting barriers or creating a license to discriminate.
What’s Next?
We will be following this issue closely, as the rule change will most likely be challenged in courts.