On October 3, 2022, TCF director of health care reform and senior fellow Jamila Taylor submitted the following public comment to the U.S. Department of Health and Human Services (HHS) in response to their notice of proposed rulemaking (NPRM), “Nondiscrimination in Health Programs and Activities” (RIN 0945-AA17). In her comment, Dr. Taylor highlights how the proposed rule would expand discrimination protections in health care settings to ensure that more patients are protected. She also explains the need to explicitly protect patients from being discriminated against due to having had an abortion, especially in the aftermath of Roe v. Wade being overturned.
October 3, 2022
Centers for Medicare and Medicaid Services
U.S. Department of Health and Human Services
7500 Security Boulevard
Baltimore, MD 21244
Attn: “Nondiscrimination in Health Programs and Activities” (RIN 0945-AA17)
I am pleased to provide comments to the Centers for Medicare and Medicaid Services’ request for public input on the notice of proposed rulemaking (NPRM), “Nondiscrimination in Health Programs and Activities,” RIN 0945-AA17.
My name is Dr. Jamila K. Taylor and I serve as the director of health care reform and senior fellow at The Century Foundation (a progressive independent think tank), where I lead the organization’s work to build on the Affordable Care Act and develop the next generation of health reform to achieve high-quality, affordable, and universal coverage in America. I also work on issues related to reproductive rights and justice, focusing on the structural barriers to access to health care, racial and gender disparities in health outcomes, and the intersections between health care and economic justice. Throughout my twenty-plus-year career, I have also championed the health and rights of women of color and other marginalized communities both in the United States and around the world, promoting policies that ensure access to reproductive and maternal health care.
I support the goals of this proposed rule of prohibiting discrimination in health care. Expanding the scope of the definition of entities that are considered health programs subject to the protections provided under the ACA and making those protections more robust will ensure that every patient can access care free of discrimination, regardless of their identities. However, I believe the regulatory language around pregnancy discrimination could be further improved to better protect patients from discrimination based on abortion access, which has only become more critical in light of the recent U.S. Supreme Court ruling in Dobbs v. Jackson Women’s Health Organization.
Background: What is section 1557?
Section 1557 is a landmark provision of the Affordable Care Act (ACA) that prohibits discrimination in health services based on race, color, national origin, sex, age, or disability. This provision is one of the most effective ways that the federal government has to ensure that patients are able to access care in a nondiscriminatory manner.
The prohibition on discrimination in health care specifically applies to “any health program or activity, any part of which is receiving Federal financial assistance,” typically called covered entities. The law explicitly clarifies that this financial assistance is expansive, including “credits, subsidies, or contracts of insurance.” The law also prohibits discrimination “under any program or activity that is administered by an Executive Agency” and any entity established by Title I of the ACA.
Section 1557 incorporated several existing antidiscrimination laws and applied them to federally funded health programs: Title VI of the Civil Rights Act of 1964 (race, color, national origin), Title IX of the Education Amendments of 1972 (sex), the Age Discrimination Act of 1975 (age), and Section 504 of the Rehabilitation Act of 1973 (disability). By explicitly referencing these laws, the ACA incorporated both the grounds for what is considered discrimination and the enforcement mechanisms for these prohibited discrimination methods into health care settings.
The proposed rule will better protect vulnerable patients in health care settings
The proposed rule issued by the Biden administration makes several important changes to better protect patients from discrimination in health care settings. This section describes three of these changes: expanding the definition of entities that are considered health programs or activities subject to section 1557, ensuring that discrimination based on sexual orientation and/or gender identity is prohibited, and improving language access services for disabled patients and patients with limited English proficiency.
Expanding the definition of health program or activity
One of the most significant changes that the proposed rule makes is expanding the definition of “health program or activity” to include more operations by health insurers and providers. Under existing regulations, only the activities funded by federal financial assistance are subject to the protections of section 1557. The proposed rule by the Biden administration would expand this to include all activities by any health insurer that receives federal financial assistance.
This approach is important to ensuring that all patients are protected by section 1557, as only around 9.7 million of the 12 million people who enrolled in marketplace coverage in 2021 received premium subsidies. While this number is likely higher in 2022 as marketplace coverage increased to 14.5 million people, limiting 1557 protections to only the activities that receive federal financial assistance needlessly leaves many patients subject to discrimination by their insurers. Around half of the country receives health coverage through employer-sponsored insurance, and the proposed rule would ensure that these patients are also protected from discrimination by their insurers.
The proposed rule would also expand section 1557 protections to additional provider types. The 2020 rule held that Medicare Part B payments are not federal financial assistance, and the proposed rule by the Biden administration would change this interpretation to hold that Medicare Part B payments do constitute federal financial assistance. As the rule points out, this is in line with other Medicare payments being considered financial assistance. Medicare Part A payments, for example, have been considered federal financial assistance under every set of regulations for section 1557.
Finally, the proposed rule also expands section 1557 protections to ensure that telehealth services are accessible to patients with language access needs. While telehealth was not addressed in previous rules, the expansion of telehealth during the COVID-19 pandemic necessitates its inclusion in this proposed rule. While studies vary in the exact magnitude of the increase, the use of telehealth clearly increased since the beginning of the COVID-19 pandemic. This is especially true for disabled patients: nearly 40 percent of disabled patients used telehealth during some point of the second year of the pandemic according to a study published in December 2021. The proposed rule would explicitly clarify that health services delivered by telehealth must be provided in an accessible way and are subject to the regulations of section 1557 as well.
Ensuring that sexual orientation and gender identity are protected from discrimination
The proposed rule also looks to change the definition of sex discrimination to include discrimination based on sexual orientation and gender identity. Sexual orientation and gender identity were originally included in the 2016 regulations for section 1557, though not as explicitly as advocates argued was necessary. The Trump administration eliminated both of these protections in its 2020 rule. On June 15, 2020, the Supreme Court ruled in Bostock v. Clayton County that existing laws prohibiting sex discrimination protect against both sexual orientation discrimination and gender identity discrimination.
This proposed rule would align the protections under section 1557 with the Bostock ruling, ensuring that LGBTQ patients receive the protections they deserve. Recent research by the Center for American Progress highlight the need for these protections: Nearly one in five LGBQ patients surveyed reported concerns over being denied good care if they disclosed their sexual orientation, and half of transgender or nonbinary patients surveyed reported similar concerns if they disclosed their gender identity.
These protections also apply to pregnancy-related conditions: for example, a provider that offers prenatal care to cisgender women would not be permitted to deny that care to transgender men or nonbinary people. The same Center for American Progress research showed the need for these explicit protections, as well. More than 20 percent of transgender or nonbinary respondents reported being denied reproductive health care due to their gender identity, and this number was much higher for transgender and nonbinary patients of color.
Improving language access requirements for patients
The final major change this proposed rule would make is to improve language access requirements for disabled patients and patients with limited English proficiency (LEP). The rule reinstates several definitions that were rescinded by the Trump administration for both disability access and language access discrimination. These definitions help explicitly clarify to whom access requirements apply to and how providers and insurers can meet them. For example, the proposed definition of “limited English proficient individual” highlights that a patient may be proficient in speaking English but not reading it, or vice versa.
In addition to reinstating these definitions, the proposed rule also establishes new training requirements for both language assistance for LEP patients and reasonable accommodations for disabled patients. While every set of regulations implementing section 1557 has required covered entities to establish policies and procedures for their organization to comply with the law, this training requirement is new. Employees who interact with patients would be required to undergo this training, ensuring that any employee with whom a patient might interact is prepared to provide the services they are entitled to under section 1557.
Finally, the proposed regulation would require covered entities to provide notice of the accommodations under section 1557 for LEP and disabled patients. These requirements are similar to existing requirements for the general nondiscrimination protections of the section: they must be provided on an annual basis, upon request, on the entity’s website, and posted in a clear and prominent physical location.
These regulations will help ensure that patients are able to communicate effectively with their providers, whether the potential for miscommunication stems from limited English proficiency or from a disability. Being unable to communicate effectively with a provider results in lower quality of care as well as less satisfaction with that care on both the patient and provider side.
Explicitly including pregnancy status in protections from sex discrimination is essential to ensuring health coverage for women and other pregnant people
While the majority of this regulation is beneficial, the omission of an explicit protection for pregnancy-related conditions must be addressed before this rule is finalized. The Department of Health and Human Services seemed to anticipate this, asking for input on this omission as well as the impact of the federal right to abortion being overturned in the recent Supreme Court decision Dobbs v. Jackson Women’s Health Organization. The finalized rule should explicitly name pregnancy termination in its definition of sex discrimination. Many communities could not access abortion care prior to the Dobbs decision, and marginalized communities will continue to bear the brunt of limited access as abortion bans are implemented. Protecting patients is even more important as criminalization of pregnancy outcomes increases and as some states seek to punish pregnant people for seeking abortions out of state. These attacks on abortion access are rooted in white supremacy, and the states seeking to restrict abortion are those with the worst outcomes for Black women’s maternal health.
This explicit protection should be present in at least two areas of the finalized regulation. First, termination of a pregnancy should be explicitly named in the definition of sex discrimination at section 92.101(a)(2). This new definition could read: “discrimination on the basis of sex includes, but is not limited to, discrimination on the basis of sex stereotypes; sex characteristics, including intersex traits; pregnancy or related conditions, including termination of pregnancy; sexual orientation; and gender identity.”
Second, the final regulation should establish explicit protections against related discrimination by providers and insurers. In the aftermath of the Dobbs decision, some patients have been denied access to needed medication based on the pharmacist’s belief that the drug would be used for an abortion. Denying these patients their prescribed medication is inappropriate and should be seen as sex discrimination under section 1557 as well. The finalized rule should amend section 92.206(b) to include the following new language for providers:
- (3) Adopt or apply any policy or practice of treating individuals differently or separating them on the basis of sex in a manner that subjects any individual to more than de minimis harm, including by adopting a policy or engaging in a practice that prevents an individual from participating in a health program or activity consistent with the individual’s gender identity, or subjects pregnant people to discriminatory treatment during childbirth, including rough handling, harsh language, or undertreatment of pain;
- (4) Deny or limit health services sought for purpose of gender transition or other gender-affirming care, fertility care, or any health services, that the covered entity would provide to an individual for other purposes if the denial or limitation is based on a patient’s sex assigned at birth, gender identity, or gender otherwise recorded.
- (5) Deny or limit services, or a health care professional’s ability to provide services, on the basis of pregnancy or related conditions, including termination of pregnancy, contraception, miscarriage management, fertility care, maternity care, or other health services;
- (6) Deny or limit services based on an individual’s reproductive or sexual health care decisions or history, including termination of pregnancy, miscarriage, or adverse pregnancy outcome; and
- (7) Deny or limit services, or a health care professional’s ability to provide services, that could prevent, cause complications to, or end fertility or pregnancies, including medications or treatments for disabilities or emergency medical conditions under 42 U.S.C. § 1395dd.
Similarly, the finalized rule should amend section 92.207(b) to include the following new language for health insurers:
- (4) Have or implement a categorical coverage exclusion or limitation for all services related to gender transition or other gender-affirming care, termination of pregnancy, contraception, fertility care, miscarriage management, pregnancy loss, maternity care, other reproductive and sexual health services, or any health services, if such denial, limitation, or restriction results in discrimination on the basis of sex;
- (5) Otherwise deny or limit coverage, deny or limit coverage of a claim, or impose additional cost-sharing or other limitations or restrictions on coverage, for specific health services related to gender transition or other gender-affirming care, termination of pregnancy, contraception, fertility care, miscarriage management, pregnancy loss, maternity care, other reproductive and sexual health services, or any health services, if such denial, limitation, or restriction results in discrimination on the basis of sex; or. . .
- (7) Deny or limit coverage, deny or limit coverage of a claim, or impose additional cost sharing or other limitations on coverage for health services that may prevent, cause complications to, or end fertility or pregnancies, if such denial, limitation, or restriction results in discrimination on the basis of sex.
Including these new provisions in the finalized rule will ensure that patients are not denied their needed medications. The burden of this denial of care will fall most harshly on patients of color and disabled patients, as we have already seen since the Dobbs decision, and this chilling effect will only worsen as more states ban abortion care.
Expanding patient protections will improve health equity
Discrimination in health care undermines the quality of that care, and the burden of discrimination falls on already marginalized groups. The proposed regulations for section 1557 would make significant strides in preventing this discrimination, especially for LGBTQ people and people who need language assistance. For patients who still face discrimination, these regulations would allow them some recourse to help make up for that harm.
Unfortunately, these regulations do not provide any protection for discrimination based on pregnancy status, including pregnancy termination. These protections are essential in ensuring that patients are able to access the health care they need and are only more important to include given the devastating Supreme Court ruling in Dobbs v. Jackson Women’s Health Organization. Before finalizing these rules, the Biden administration should include the protections for abortion care described above in this comment. Doing so will ensure that the goal of section 1557 is better achieved. I appreciate the opportunity to comment on this proposed rule.