The following comments were submitted by Richard Besser, MD, Robert Wood Johnson Foundation (RWJF) president and CEO, on the U.S. Department of Health and Human Services (HHS)’ Office for Civil Rights (OCR) proposed rule, Nondiscrimination in Health Programs and Activities (hereinafter ”2022 Proposed Rule”), regarding implementation of Section 1557 of the Affordable Care Act (ACA).
RWJF is committed to improving health and health equity for all in the United States. In partnership with others, we are working to develop a Culture of Health rooted in equity that provides every individual with a fair and just opportunity to thrive, no matter who they are, where they live, or how much money they have.
Health is more than an absence of disease. It is a state of physical, mental, and emotional wellbeing. It reflects what takes place in our communities, where we live and work, where our children learn and play, and where we gather to worship. That is why RWJF focuses on identifying, illuminating, and addressing the barriers to health caused by structural racism and other forms of discrimination, including sexism, ableism, and prejudice based on sexual orientation.
We lean on evidence to advance health equity. We cultivate leaders who work individually and collectively across sectors to address health equity. We promote policies, practices, and systems-change to dismantle the structural barriers to wellbeing created by racism. And we work to amplify voices to shift national conversations and attitudes about health and health equity.
RWJF is pleased to offer the following comments in response to the 2022 Proposed Rule. The Foundation’s comments are grounded in the perspectives and learnings of our grantees, who include academic researchers, policy experts, advocates, and organizers with deep expertise in healthcare delivery and health financing. The comments are also based on results from Foundation-funded health services research and the Foundation’s work to ensure that everyone has a fair and just opportunity to be as healthy as possible. We focus on the significance of the nondiscrimination protections embodied in Section 1557 and elements of the 2022 Proposed Rule that touch on topics of current and historic priority to the Foundation as outlined here:
I. Importance of Section 1557 and the 2022 Proposed Rule;
II. Applicability of Section 1557 Nondiscrimination Protections;
III. Discrimination Based on Race and Ethnicity;
IV. Discrimination Based on Limited English Proficiency and Other Barriers to Language Access;
V. Discrimination Based on Disability;
VI. Discrimination Based on Gender Identity, Sex Characteristics, Sex Stereotypes, Transgender Status, and Sexual Orientation;
VII. Discrimination Based on Sex, Including on the Basis of Pregnancy-Related Conditions;
VIII. Use of Algorithms in Decision-Making;
IX. Benefit Design; and
X. Data Collection.
I. Importance of Section 1557 and the 2022 Proposed Rule
Section 1557, the key nondiscrimination provision of the ACA, prohibits discrimination in health programs and activities receiving federal financial assistance, health programs and activities administered by the executive branch, and entities created under the ACA, including the Marketplaces and health plans sold through the Marketplaces. It is the first federal law to ban sex discrimination in healthcare. Further, it encompasses protections against discrimination on the basis of race, color, national origin (including language access), age, and disability by building on existing civil rights laws. By design, Section 1557 recognizes intersectionality—that is, that individuals may be part of multiple protected classes and may face discrimination because they belong to one or more of these classes.
RWJF is therefore keenly interested in the 2022 Proposed Rule. Clear and rigorous regulations will provide key guidance to healthcare systems, health insurance issuers, healthcare professionals, and other stakeholders who will be responsible for complying with these requirements. They will also help ensure that HHS can exercise the full scope of its authority to investigate complaints, take enforcement action, and remedy discrimination against those protected by Section 1557.
II. Applicability of Section 1557 Nondiscrimination Protections
The Foundation strongly supports the 2022 Proposed Rule’s restoration of regulations recognizing Section 1557’s applicability to all federal health programs administered by HHS. RWJF likewise supports the application of Section 1557 to commercial health plans if the insurer receives any form of federal financial assistance from HHS as well as the clarification that Section 1557 applies to short-term, limited duration plans and excepted benefits if the issuer receives federal financial assistance.
Further, RWJF strongly supports OCR’s proposal to treat Medicare Part B payments as federal financial assistance and Part B providers and suppliers as recipients under Section 1557, Title VI of the Civil Rights Act of 1964, Title IX of the Education Amendments of 1972, Section 504 of the Rehabilitation Act of 1973, and the Age Discrimination Act of 1975 Act. This change in interpretation is well-supported by how the Part B program has evolved, the fact that most Part B providers are already receiving other forms of federal financial assistance, and the clear intent of Section 1557.
III. Discrimination Based on Race and Ethnicity
Federal law has prohibited race discrimination in healthcare since the passage of Title VI of the Civil Rights Act of 1964. However, Title VI does not apply to all healthcare-related activities and programs, nor does it apply to all forms of discrimination in healthcare. Discriminatory healthcare systems and policies play an outsized role in the ability of people of color to access quality healthcare in the United States. Section 1557 is an important tool for rectifying centuries of policies and practices that have created worse health outcomes for communities of color and addressing the deep legacy of racism and other forms of discrimination in health systems and health policy. The 2022 Proposed Rule proscribes many forms of discrimination that amplify the impacts of racism and subject people to dual discrimination.
While these effects have been documented in many prior studies, a new survey from Spring 2022 underscores the need to address healthcare discrimination through robust protections like the 2022 Proposed Rule. NPR, RWJF, and the Harvard T.H. Chan School of Public Health conducted a national survey, Personal Experiences of U.S. Racial/Ethnic Minorities in Today’s Difficult Times, from May 16 – June 13, 2022, that included an examination of the differences between the experiences with healthcare among minority communities compared with non-Hispanic White individuals. The national survey found that among adults who have seen a healthcare provider in the past year, 15 percent of Black patients, 14 percent of Latino patients, 21 percent of Native American patients, and 5 percent of Asian patients say they were either treated unfairly, disrespected, or turned away because of their race/ethnicity, or they received poor quality of care because of their race/ethnicity. Three percent of White patients reported these experiences.
OCR properly notes that racial health disparities in the United States are directly attributable to “persistent bias and racism” in the healthcare system. Both intentional and unintentional race discrimination serve as barriers to care, lead to lower quality care, and drive worse health outcomes for communities of color. While the 2022 Proposed Rule does not have specific provisions related to discrimination based on race and color, RWJF wants to emphasize the importance of protecting individuals from this discrimination and the compounding impact race and color can have on intersectional discrimination.
RWJF offers the following recommendations for further strengthening regulatory protections for individuals based on race and color:
Facilitate strong administrative remedies, for example, by ensuring that HHS has clear and accessible procedures under § 92.301 for individuals to file, and the agency to investigate and remediate, discrimination complaints, including intersectional discrimination complaints;
Recognize the impact of intersectional discrimination, for example, by adding “or a combination thereof” to the bases of discrimination described in § 92.303(a) and § 92.304(a); and
Require covered entities to collect and report comprehensive, disaggregated demographic data. See below for discussion and specific recommendations related to data collection.
IV. Discrimination Based on Limited English Proficiency and Other Barriers to Language Access
The Foundation strongly supports the provisions of the 2022 Proposed Rule related to language access for individuals with limited English proficiency (LEP) and individuals with disabilities. Language access is essential to ensuring effective communication between individuals and the healthcare system, without which these individuals may not enroll in programs for which they are eligible, may not receive timely or comprehensive healthcare, and may not know their rights to free, timely, and competent language services. These provisions provide important protections for the eight percent of people in the United States who report they do not speak English very well and the additional ten percent who report communication disabilities.
Multiple studies have demonstrated that language barriers can impede quality healthcare and compromise health outcomes. RWJF’s own work on language access includes the Hablamos Juntos (Together We Speak) program, a national program which focused on improving interpretation for Spanish-language speakers in healthcare settings. This five-year initiative demonstrated that providing interpreters for patients who were more comfortable speaking Spanish than English led to increased satisfaction with outpatient care. A closely related project, Speaking Together: National Language Services Network, developed and piloted five performance measures for hospital-based language services. The Aligning Forces for Quality initiative subsequently released revised measure specifications that remain relevant for quality measurement and continual quality improvement of language access services.
RWJF commends the inclusion of significant new language access provisions in the 2022 Proposed Rule, including:
Definitions for qualified interpreters for limited English proficient individuals, qualified translators, qualified readers, qualified bilingual/multilingual staff, and qualified interpreters for an individual with a disability;
A definition of machine translation and the recognition that machine translation of critical materials should be reviewed by qualified human translators;
Notice requirements on the availability of language access services and auxiliary aids and services;
Limitations on the use of adults or minors accompanying the patient as interpreters; and
Restoration of video interpretation requirements.
These provisions will bolster the adoption and extension of language access requirements, thus improving the healthcare experiences of more than 25 million people. RWJF also encourages the Department to strengthen the 2022 Proposed Rule through the following changes:
Creating greater alignment between the definitions of qualified interpreters for individuals with disabilities and qualified interpreters for LEP individuals. This change will ensure that interpreters for persons with disabilities are required to demonstrate proficiency similar to interpreters for LEP individuals;
Requiring covered entities to develop communication access and quality measurement plans, grounded in an understanding of the service area population and their needs, for both individuals with limited English proficiency and individuals with disabilities. This type of advance planning and data for continual quality improvement will enable covered entities to thoughtfully identify how to balance their obligations to provide communication access with other business needs and monitor impact;
Requiring entities to develop and implement training that supports best practices for meeting the needs of LEP patients and patients with disabilities, such as how to work with interpreters, thus improving the delivery of language access services;
Ensuring that the LEP parents/guardians, family members, or companions of English-speaking minors or incapacitated adults have access to qualified interpreters and translated materials, so they may participate in decision-making and understand caregiving instructions; and
Requiring telehealth platforms to be able to include third-party interpreters and to accommodate individuals with disabilities who experience difficulty communicating via traditional telehealth models. These steps would improve equitable access to teleheath services. To date, LEP patients participate in a significantly lower level of telehealth visits than English-speaking patients.
V. Discrimination Based on Disability
RWJF appreciates the ways in which the 2022 Proposed Rule elevates the importance of supporting the needs of individuals with disabilities. In particular, RWJF strongly supports the following provisions of the 2022 Proposed Rule that will improve regulatory protections for individuals with disabilities:
Prohibiting discriminatory healthcare plan benefit design and marketing practices. Despite protections in the ACA, insurers still seek to avoid covering populations with high healthcare costs, or cap coverage of high-cost healthcare services and supports. As one example, private insurers often place unique annual coverage caps on durable medical equipment, such as wheelchairs, needed by individuals with disabilities. For recommendations on how this provision can be further strengthened, see below section IX., “Benefit Design.”
The explicit requirement that health insurance coverage includes coverage for the most integrated setting appropriate to the needs of individuals with disabilities. This provision acknowledges a fundamental tenet of disability rights law and the pivotal 1999 Supreme Court decision in Olmstead v. Zimring.
Provisions on effective communication and accessible information and communication technology (ICT) requirements for individuals with disabilities.
In response to OCR’s request for comments on whether the Section 1557 rule should require covered entities to comply with specific online accessibility standards, RWJF recommends requiring covered entities to comply over time with the latest Web Content Accessibility Guidelines as they are updated by the Web Accessibility Initiative.
RWJF offers the following additional recommendations for further strengthening regulatory protections for individuals with disabilities:
Make § 92.202(b) explicitly parallel the language in § 92.201(b) by stating that auxiliary aids and services must be provided free of charge, be accurate and timely, and protect the privacy and the independent decision-making of the individual with a disability. This change would ensure that requirements related to these aids and services are readily apparent to all stakeholders;
Incorporate existing standards relating to accessible medical and diagnostic equipment that were developed by the U.S. Access Board and finalized in 2017. For some people with disabilities, equipment accessibility is as necessary to equally effective healthcare as the accessibility of buildings and facilities and is equally linked to requests for reasonable modifications in a covered entity’s policies and procedures; and
Further improvements in the Proposed Rule’s language access requirements related to individuals with disabilities, as discussed in section IV, “Discrimination Based on Limited English Proficiency and Other Barriers to Language Access.”
VI. Discrimination Based on Gender Identity, Sex Characteristics, Sex Stereotypes, Transgender Status, and Sexual Orientation
The Foundation strongly supports the inclusion of gender identity, sex characteristics, including intersex traits, sex stereotypes, and sexual orientation in the 2022 Proposed Rule’s definition of discrimination on the basis of sex. Discrimination and limited access to providers attuned to the needs of sexual and gender-diverse persons present a serious barrier to heath care for lesbian, gay, bisexual, transgender, queer, and intersex (LGBTQI) individuals. In a 2017 survey conducted by RWJF, National Public Radio and the T.H. Chan School of Public Health, 18 percent of LGBTQI people reported avoiding medical care due to concerns about discrimination, while a recent Foundation-supported review by the National Academies of Sciences, Engineering and Medicine concluded that the discrimination sexual and gender-diverse persons experience obtaining and using health insurance creates a barrier to accessing healthcare. For example, the National Academies’ review cited multiple findings that a significant proportion of transgender people endure negative experiences in healthcare settings, such as verbal harassment and physical assault, or outright denial of treatment related to their gender identity. In addition, sexual and gender-diverse people are disproportionately affected by chronic illness, such as diabetes, heart disease, asthma, and HIV, and earlier onset of disability compared to their heterosexual and cisgender peers.
We applaud HHS for articulating a clear and expansive explanation of discrimination on the basis of sex and note that this definition is consistent with recent court decisions on Section 1557 and Title VII. RWJF offers the following recommendations for further strengthening regulatory protections for LGBTQI individuals:
Explicitly include transgender status in the definition of discrimination on the basis of sex at § 92.101(a)(2) and throughout the regulation. While the terms “gender identity” and “transgender” are often used interchangeably, this clarification would remove potential ambiguity;
State unequivocally that Section 1557, as federal law, preempts any state or local law restricting insurance coverage or the provisions of gender-affirming care by healthcare providers; and
Clarify that insurers may not categorically limit or exclude from coverage “any” (as opposed to “all”) health services related to gender transition or gender-affirming care (§ 92.207(b)(4)).
VII. Discrimination Based on Sex, Including on the Basis of Pregnancy-Related Conditions
RWJF supports the 2022 Proposed Rule’s broad interpretation of discrimination on the basis of sex. In response to OCR’s request for comments on whether the department should include a provision in the Section 1557 regulations specifically prohibiting discrimination on the basis of pregnancy-related conditions as a form of sex-based discrimination, RWJF strongly supports this approach. RWJF believes unequivocally that individuals seeking reproductive healthcare deserve to be seen, heard, represented, cared for, and supported—and that policies at all levels of government should reflect those principles in action. Examples around the country demonstrate that pregnancy triggers a wide range of discriminatory health risks, extending to the withholding of care during life-and-health endangering emergencies.
Each year, approximately 700 women and birthing people die in the United States as a result of complications of pregnancy. The U.S. has the highest rate of maternal mortality among industrialized countries. And yet, maternal deaths are just the tip of the iceberg of the impacts of pregnancy-related complications; over 50,000 women and birthing people experience severe complications of pregnancy that result in short- and long-term health consequences. Further, rates of maternal death and severe maternal morbidity have steadily increased in the U.S. over the last several decades.
Stark racial inequities exist in the rates of maternal mortality and severe maternal morbidity. Black women and birthing people are more than three times as likely as White women and birthing people to die as a result of pregnancy-related complications. Indigenous women and birthing people are more than twice as likely as White women and birthing people to die as a result of pregnancy-related complications. These racial inequities deepen further for women and birthing people aged 30 and older.
Even in states with the lowest rates of maternal mortality and even when minoritized populations have higher levels of education than their White counterparts, these inequities persist. For example, the rate of maternal death among Black women and birthing people with a college degree is 1.6 times higher than the rate of maternal death for White women and birthing people with less than a high school diploma.
According to the Centers for Disease Control and Prevention, the quality of care likely plays a role in both the high rates of maternal mortality and severe maternal morbidity in the U.S. as well as the persistent racial inequities in maternal health outcomes. Importantly, analyses by state maternal mortality review committees have found that a staggering 80 percent of maternal deaths are preventable. There are clear intervention points where death and injury can be prevented. An explicit prohibition as part of Section 1557’s regulations on discrimination on the basis of pregnancy-related conditions as a form of sex-based discrimination is an important tool for patients, families, healthcare providers, and healthcare systems to improve the quality of care for pregnant women and birthing people and especially to root out the intersectional discrimination experienced by pregnant women and birthing people of color.
RWJF recommends that OCR standardizes the definition of “pregnancy or related conditions” throughout the 2022 Proposed Rule and ensures that such definition includes “termination of pregnancy.” An explicit prohibition of discrimination on the basis of pregnancy termination is particularly important in the wake of the U.S. Supreme Court’s decision in Dobbs v. Jackson Women’s Health Organization.
VIII. Use of Algorithms in Decision-Making
We applaud the Department’s decision to prohibit discrimination through the use of clinical algorithms. These clinical decision-making tools can amplify and perpetuate pre-existing inequities present in the data that informed the algorithm, including biases related to race, ethnicity, sex, disability, language, and age. Clinical algorithms can therefore result in discriminatory healthcare decisions, such as effectively requiring Black patients to be sicker than White patients to qualify for a care coordination program for high-risk patients. Foundation awardees have also identified bias in other forms of automated decision-making prevalent in the healthcare system, such as assessment tools for home- and community-based services that determine both eligibility and service allocation as well as Medicaid eligibility systems that wrongfully deny or terminate coverage. We therefore urge HHS to expand its prohibition on discriminatory decision-making to include additional types of algorithms.
IX. Benefit Design
RWJF strongly supports language in the 2022 Proposed Rule prohibiting covered entities that provide or administer health insurance coverage or other health-related coverage from deploying discriminatory benefit designs or marketing practices (§92.207(b)(2)). In the Preamble, the Department identifies benefit design elements, such as exclusions and limitations on benefits, cost-sharing designs, utilization management techniques, provider network design, and reimbursement rates, that may be wielded in a discriminatory manner. Unfortunately, the Department undercuts the general regulatory language by emphasizing plan discretion in benefit design, even declining to provide examples of discriminatory benefit design, with the important exception of the categorical exclusion of services related to gender transition.
The Foundation notes that benefit design is a particularly vulnerable dimension of health insurance for people with disabilities. In many cases, individuals with disabilities have higher health needs, and are therefore more affected by coverage limits and exclusions than others with health insurance. In addition, disability bias, like gender bias, can result in benefit designs that produce targeted discriminatory results. For example, coverage exclusions and limitations that restrict the coverage of therapy services to the restoration of function systematically and discriminatorily exclude coverage of these services for children and others who require these services to attain functions such as speech and mobility. Similarly, Medicare’s limitation on wheelchair replacement to one chair every five years would not affect individuals who need a wheelchair temporarily but poses a potential significant burden for people who permanently depend on a well-functioning wheelchair to navigate the wider world.
RWJF also notes that network design and network adequacy are particularly powerful benefit design levers for promoting—or undermining—health equity. The vast majority of people with employer-sponsored health insurance, for example, are enrolled in plans that impose higher out-of-pocket costs for out-of-network care or exclude coverage for out-of-network services altogether. Even with important new protections under the No Surprises Act, for a disproportionate number of people in the groups protected by Section 1557, who do not have the financial means to seek out-of-network care, their health coverage is effectively limited to their plan’s provider network. For example, benefit design may be discriminatory if the provider network does not include a health professional who can manage the healthcare needs of a patient with sickle cell disease, which is a disease that disproportionately affects Black and Hispanic individuals.
We urge the Department to specify in regulation that insurance benefit designs that specifically target individuals with disabilities and other protected groups are impermissible under Section 1557. Similarly, we recommend that the Department amend the proposed § 92.207(b)(2) to expressly reference provider networks as a type of design feature that falls within the scope of prohibited discriminatory activities.
X. Data Collection
The Foundation’s historic engagement with data collection and analysis has demonstrated the relationship between data collection and quality improvement, including improved care experiences and outcomes for members of racial and ethnic minority groups. Data collection and analysis can illuminate systemic problems, which policymakers, healthcare systems, and community members can then address. These benefits extend equally to healthcare stakeholders themselves and underscore why data collection should be a shared priority for both HHS and the covered entities it regulates. At the same time, Foundation-sponsored work has highlighted the ongoing challenges of collecting health data and opportunities for improvement. Similarly, HHS’s responsibility under section 1557 demands improved data collection to identify and address systemic problems of discrimination based on race, ethnicity, language, disability, age, and sex as defined in the 2022 Proposed Rule.
RWJF urges OCR to adopt a demographic data collection requirement and establish demographic data collection as a function of civil rights monitoring. Without these data, HHS will have limited ability to investigate, understand, and remedy systemic discrimination within the healthcare system, including issues that OCR has identified within the 2022 Proposed Rule. Demographic data collection requirements should align with the demographic characteristics enumerated within the rule: race, ethnicity, language, disability, age, sex, sexual orientation, gender identity, pregnancy status, and sex characteristics.
While HHS has already identified recommended practices for collecting demographic data in each of these categories, we encourage the Department to also specify greater disaggregation of race and ethnicity data. A significant body of Foundation-sponsored work argues that examining trends through the lens of broad racial and ethnicity categories can mask problems within subgroups. In contrast, disaggregation can deliver more representative information. Foundation-supported work on data collection related to race and ethnicity could inform this requirement. For example, Heath Equity: Everyone Counts, a 2022 report from RWJF and the University of California San Francisco, underlines the importance of using disaggregated race and ethnicity data for policymaking and civil rights monitoring and provides recommendations for improving data collection practices.
We thank you for the opportunity to comment on the 2022 Proposed Rule. We have included numerous citations to supporting research, including direct links to the research. We direct HHS to each of the materials we have cited and made available through active links, and we request that the full text of each of the studies and articles cited, along with the full text of our comment, be considered part of the formal administrative record for purposes of the Administrative Procedure Act. If OCR is not planning to consider these materials part of the record as we have requested here, we ask that you notify us and provide us an opportunity to submit copies of the studies and articles into the record.
We look forward to continuing to work with the Department and other partners to ensure that everyone has the opportunity to achieve optimal health and wellbeing.