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New data reveal that LGBTQI+ communities encounter discrimination and other challenges when interacting with health care providers and health insurers, underscoring the importance of strengthening nondiscrimination protections through Section 1557 of the Affordable Care Act.
Strengthening Health and Ending the Pandemic, Affordable Care Act, Health Coverage and Access, LGBTQ Health, LGBTQ Rights
Senior Media Manager
Senior Director, Safety and Justice Campaign and Director, State and Local Government Affairs
Director, Federal Affairs
In 2017, Jesse Brace sought treatment for seizures from an emergency room near their home in Kansas.1 After disclosing to the staff that they are transgender and nonbinary, that their name is different from their legal name, and that they use gender-neutral pronouns, the staff refused to acknowledge this information and sent Jesse home without providing the health care services they needed. That discriminatory experience and similar encounters with other health care providers led Jesse to avoid care entirely. Jesse began having seizures so frequently that they could no longer drive to work, so they began sleeping in their car outside of their job. Soon after, Jesse lost that job and became unhoused, living out of their car or on the streets for more than three years.
Interpersonal and structural discrimination in health care settings remains a significant problem for LGBTQI+ communities, especially transgender individuals, people with intersex traits, LGBTQI+ people of color, and LGBTQI+ people with disabilities, for whom obstacles to care and disparate health outcomes are even more pronounced.2 Discrimination in health care adversely affects the mental and physical health of LGBTQI+ communities and engenders avoidance behavior, delays, or denials of care that exacerbate health disparities among LGBTQI+ populations.3 The Affordable Care Act (ACA) established and implemented historic nondiscrimination protections for LGBTQI+ people through Section 1557. And in August 2022, the Office for Civil Rights (OCR) within the U.S. Department of Health and Human Services (HHS) issued its latest notice of proposed rulemaking to expand and strengthen nondiscrimination protections in Section 1557 that will affect a wide range of populations.4 This proposed rule is essential for securing nondiscrimination protections in health insurance coverage and health care for millions of Americans, including LGBTQI+ communities.
This issue brief summarizes key LGBTQI+-related nondiscrimination provisions in the proposed rule while presenting new, nationally representative data from the Center for American Progress’ 2022 survey. (see Methodology) The survey findings highlight that LGBTQI+ people frequently experience discrimination when interacting with health care providers and insurers, underscoring the need for HHS to finalize a strong Section 1557 rule that will safeguard access to health care and coverage for LGBTQI+ communities.
As the primary nondiscrimination provision of the Affordable Care Act, Section 1557 prohibits health programs or facilities that receive federal funds from discriminating based on race, color, national origin, age, disability, or sex. Section 1557 incorporates existing federal civil rights laws and prohibits discrimination by federally funded health programs, meaning that an individual cannot be excluded from participation in, be denied the benefits of, or be subjected to discrimination on these bases by any health program or activity that receives federal financial assistance.5
Since the enactment of the ACA in 2010, Section 1557 has undergone regulatory rulemaking numerous times—most recently in 2020 when the Trump administration issued a rule6 that eliminated nondiscrimination protections based on sexual orientation, gender identity, and sex stereotyping.7 Litigation related to Section 1557 rulemaking is ongoing.8
While the proposed rule strengthens the regulations and clarifies the scope of protections under Section 1557, state and federal case law already makes clear that the statute’s prohibition on sex discrimination bans discrimination against LGBTQI+ communities.9
The 2022 proposed rule would restore and expand nondiscrimination protections for LGBTQI+ communities under Section 1557 of the Affordable Care Act and help to address significant challenges that LGBTQI+ communities encounter when seeking health care from providers and receiving coverage through health insurers. The rule is broad in scope and would apply to health programs or activities that receive federal financial assistance from HHS, health programs or activities administered by HHS, and programs or activities administered by entities established under Title I of the ACA, including state and federal health insurance marketplaces. For example, covered entities that are legally required to comply with Section 1557 include hospitals, health clinics, state or local health agencies, community-based health care providers, nursing facilities, pharmacies, residential or community-based treatment facilities, Medicare, Medicaid, and private health insurers. Notably, the proposed rule also includes Medicare Part B providers as recipients of “federal financial assistance,” thereby increasing the number of providers covered by Section 1557.
Importantly, the proposed rule clarifies that Section 1557’s prohibition of discrimination “on the basis of sex” includes discrimination based on sex stereotypes, sexual orientation, gender identity, and sex characteristics, including intersex traits. HHS explains that the inclusion of sex stereotypes is consistent with existing civil rights case law. In particular, the inclusion of sexual orientation and gender identity aligns with the U.S. Supreme Court’s decision in Bostock v. Clayton County,10 which affirmed that the prohibition on sex discrimination in Title VII of the Civil Rights Act of 1964 extends to discrimination based on sexual orientation and gender identity. Finally, discrimination on the basis of sex also includes intersex traits because discrimination based on an individual’s sex characteristics is inextricably tied to sex and is therefore also prohibited.
This issue brief highlights two particular aspects of the rule: 1) nondiscrimination requirements for providers and 2) nondiscrimination requirements for insurers. As underscored by CAP’s nationally representative 2022 survey data, these protections are much needed.
The proposed rule requires covered entities to ensure equal access to their health programs and activities for LGBTQI+ people. It enumerates specific discriminatory actions by providers that are prohibited on the basis of an individual’s sex, which includes sex assigned at birth, gender identity, or gender recorded in the person’s medical record, for example.
In particular, providers cannot:
These provisions are critical to better protect LGBTQI+ patients who continue to face discrimination by health care providers that adversely affects their health and may lead to delays or avoidance of care altogether, contributing to poorer health outcomes.11 For transgender and nonbinary people, who are facing a wave of politically motivated state attacks on their access to basic health care, these protections are particularly urgent.12
LGBTQI+ individuals may experience discrimination in the form of health care professionals refusing to provide them with care,13 which can lead to additional health concerns.14 Denial of care is a significant concern among LGBTQI+ patients.
According to CAP’s 2022 data, in the past year:
CAP’s 2022 survey also examined instances when doctors or other health care providers refused to provide care to LGBTQI+ respondents in the year prior. Fifteen percent of LGBQ respondents, including 23 percent of LGBQ respondents of color, reported experiencing some form of care refusal by a doctor or other health care provider in the year prior.15 (see Figure 1)
Reported rates of refusals by health care providers in the past year were markedly higher among transgender and nonbinary respondents, especially respondents of color. Overall, 32 percent of transgender or nonbinary respondents, including 46 percent of transgender or nonbinary respondents of color, reported that they experienced at least one kind of refusal by a health care provider in the past year.16 (see Figure 2)
For example, in the past year:
Intersex respondents also reported refusals of care at alarmingly high rates. For example, in the past year:
CAP 2022 survey respondents were asked whether, in the past year, they had postponed or did not try to get health care due to mistreatment or discrimination by providers. LGBTQI+ respondents were more than three times as likely as non-LGBTQI+ respondents to report that in the past year, they postponed or avoided getting needed medical care when sick or injured due to disrespect or discrimination from doctors or other health care providers: 23 percent compared with 7 percent. Similarly, LGBTQI+ respondents were three times as likely to report that in the year prior to the survey, they postponed or avoided getting preventive screenings—for instance, screening for sexually transmitted infections, HIV, high blood pressure or cholesterol—due to disrespect or discrimination from doctors or other health care providers: 21 percent compared with 7 percent.
Among LGBTQI+ respondents, clear demographic trends emerge: Transgender or nonbinary adults, intersex adults, LGBTQI+ adults with disabilities, and LGBTQI+ people of color were all more likely to report delaying or not trying to get needed medical care or preventive screenings. (see Figure 3)
The rule also prohibits Medicare, Medicaid, the health insurance marketplaces, and private insurance carriers from discriminating against LGBTQI+ people seeking health insurance coverage. This includes prohibiting entities from denying, canceling, limiting, or refusing to issue or renew coverage; denying or limiting coverage of a claim or imposing additional cost sharing or other limitations or restrictions on coverage; and adopting market practices or benefit designs that discriminate based on those protected characteristics. Additionally, the proposed rule provides examples of specific discriminatory actions that are prohibited on the basis of an individual’s sex, which includes sex assigned at birth, gender identity, and recorded gender.
For example, covered entities cannot:
The proposed rule also reverses “conforming amendments” included in the 2020 version of the Section 1557 rule. These amendments eliminated explicit nondiscrimination protections on the basis of sexual orientation and gender identity from multiple Centers for Medicare and Medicaid Services (CMS) rules related to benefit design, essential health benefits, qualified health plans, and the operations of the health insurance marketplaces.17
These provisions are paramount to address discrimination and ensure coverage parity for transgender, gender nonconforming, and nonbinary individuals. Ultimately, the proposed rule establishes standards to ensure that entities apply coverage in a consistent, neutral, and nondiscriminatory way, but it does not require covered entities to provide coverage for specific procedures or treatments for gender-affirming care that are not otherwise covered.
Although transgender people benefited from the adoption of the ACA, disparities persist in the uninsured rate for transgender people compared with cisgender people.18 Indeed, transgender people who have insurance continue to be denied coverage for medically necessary services, including gender-affirming care.19 While the majority of plans offered on the ACA marketplaces have removed categorical exclusions of all gender-affirming care in their benefit design,20 many insurers whose plans cover some gender-affirming care continue to impose exclusions or restrictions on many surgeries that are medically necessary to treat gender dysphoria or affirm a patient’s gender.21 For example, issuers continue to maintain internal coverage guidelines that exclude an array of medically necessary gender-affirming surgeries by designating these procedures as “cosmetic” or “not medically necessary” despite strong clinical evidence and standards of care that find these procedures medically necessary to provide gender-affirming care, including by treating gender dysphoria, improving mental health, and improving quality of life.22
CAP’s 2022 survey data underscore the importance of addressing discriminatory health insurance policies and the need to improve access to coverage for transgender and nonbinary individuals, especially transgender and nonbinary respondents of color. Overall, 30 percent of transgender or nonbinary people, including 47 percent of transgender or nonbinary people of color, reported experiencing one form of denial by a health insurance company.23 (see Figure 4)
For example, in the past year:
In addition to health insurance denials, transgender and nonbinary respondents reported experiencing a range of other challenges related to insurance. These include barriers to accessing coverage for gender-affirming and other kinds of care, updating health insurance records, and network adequacy issues. (see Figure 5).
Data from CAP’s nationally representative survey reveal that discrimination against LGBTQI+ communities remains pervasive, particularly for transgender people, people with intersex traits, and LGBTQI+ communities of color. These findings underscore the need for HHS to adopt robust nondiscrimination protections for LGBTQI+ people in the final Section 1557 rule, which must be accompanied by strong enforcement, clear processes for filing complaints, and effective training and initiatives to raise awareness of the right to be free from discrimination.
This issue brief uses data from a new, nationally representative survey jointly conducted in June 2022 by the Center for American Progress and NORC at the University of Chicago. The sample consists of U.S. adults ages 18 and older and includes data from 1,828 LGBTQI+-identifying adults and 1,542 non-LGBTQI+-identifying adults. The sample has been weighted to account for both U.S. population characteristics and survey nonresponse.
The survey asks about a wide range of experiences, including mistreatment and discrimination by health providers, as well as barriers to accessing insurance coverage. The full results of the study, along with a detailed overview of the methodology, are on file with the authors. All in-text comparisons between LGBTQI+ respondents and non-LGBTQI+ respondents are significant at the 0.05 level.
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