Post authored by Ashka Patel & Jenny Choi
On August 4, 2022, the Biden Administration’s Department of Health and Human Services (“HHS”) and the Office of Civil Rights proposed to rule change to expand anti-discrimination protections in the Affordable Care Act’s (“ACA’s”) Section 1557, a landmark civil rights law prohibiting discrimination based on race, color, national origin, sex, age and disability in health care.
The 2022 Proposed Rule increases protections for people who are pregnant, people seeking an abortion or who have had an abortion in the past, LGBTQI+ people, people with limited English proficiency, people living with disabilities, and people who are at the intersection of these and other marginalized communities.
The Women’s Law Project strongly supports the 2022 Proposed Rule.
WLP submitted a formal comment to the HHS in support of the 2022 Proposed Rule and included recommendations urging HHS to further clarify and strengthen the anti-discrimination protections as they formulate the final rule. Review our comment here.
Scope Now Includes Medicare Part B and Telehealth Services and Limits Danforth Amendment
HHS made significant updates to the scope of Section 1557 in three important ways: restoration, expansion and limitation.
First, the 2022 Proposed Rule recognizes that Section 1557 applies not only to programs or activities administered by HHS but also virtually all healthcare providers and issuers selling health insurance plans within and outside of the ACA Marketplaces. Previously, many health insurance plans were exempted from Section 1557 contrary to Congressional intent and statutory language of the law. The 2022 Proposed Rule recognizes this inconsistency and restores regulations recognizing Section 1557’s applicability to both plans sold though ACA state and federal Marketplaces and other commercial health plans if the insurer receives federal financial assistance.
Second, the 2022 Proposed Rule improves protections for older adults and people with disabilities by expanding the scope and treats Medicare Part B payments as federal financial assistance and Part B providers and suppliers as recipients under Section 1557. The clarification is especially important for older adults and people with disabilities who rely on Medicare Part B benefits. Further, the rule allows individuals with limited English proficiency (“LEP”) to benefit from Medicare Part B by ensuring language access services are also available for services provided solely from the plan.
Additionally, the scope of Section 1557 recognizes the prevalence and potential of telehealth and adds a new regulation expressly prohibiting discrimination in providing such services. While telehealth services offer a host of advantages, the potential for telehealth to minimize health inequities is lost if telehealth fails to practically accommodate those who have a disability, who speak a language other than English, or who live in low-income neighborhoods and/or rural communities.
Third, health care refusals remain a troubling reality for many populations who already face significant health disparities. Women of color are disproportionately more likely to give birth at a Catholic hospital and consequently denied access to many facets of comprehensive sexual and reproductive health care. As such, it is paramount that the 2022 Proposed Rule seeks to construe Section 1557 to not incorporate Title IX’s religious exemption or its abortion neutrality provision. Instead of a blanket abortion or religious freedom exemption for health care providers, the proposed rule lays out procedures for providers to qualify for an exemption.
The Definition of “Sex” Now Includes Pregnancy Status and Abortion
Under the ACA, people cannot be discriminated against on the basis of sex. However, the scope of “sex” is often interpreted narrowly by health insurance providers and health care professionals.
The 2022 Proposed Rule expands the scope of “sex” to explicitly include pregnancy status and abortion. This prohibits health care discrimination against people who are pregnant or have been pregnant in the past. This also protects people who are actively seeking an abortion or have had an abortion, a very common experience. The 2022 Proposed Rule protects these people from unlawful discrimination.
Finally, the changes also protect people needing emergency abortion care from denial of care.
To strengthen and clarify these protections, the Women’s Law Project recommends explicit and consistent verbiage. In particular, we strongly urge the HHS to explicitly include “termination of pregnancy” in the official definition of “on the basis of sex.”
The Definition of “Sex” Now Includes Sex Stereotyping, Sex Characteristics, Sexual Orientation, and Gender Identity
The 2022 Proposed Rule further expands the definition of “sex” to include sex stereotyping, sex characteristics (including intersex traits), sexual orientation, and gender identity. This provides desperately needed protection for the LGBTQI+ community.
The implications of these changes are powerful. For example, someone who identifies as male or nonbinary can access a mammogram or pap smear if medically necessary. Additionally, the 2022 Proposed Rule prohibits health care providers from refusing gender-affirming care. These changes are critical because they facilitate routine and other necessary health care services and ensure health care services critical to maintaining mental health.
The 2022 Proposed Rule extends protections to include secondhand discrimination experienced by people with LGBTQI+ people in their family, such as a parent, partner, or sibling.
However, there is room for improvement in the final rule.
The LGBTQI+ community faces rampant discrimination, disrespect, and insensitivity by health care professionals. Eighty percent of transgender adults are treated with less respect and sensitivity than cisgender adults. This understandably results in reduced health care visits, often despite a dire need for health care and to the person’s detriment.
No person should have to make the choice between being treated with common decency and respect and maintaining their health. To further strengthen and clarify these protections, we urge the HHS to explicitly include “transgender status” in the definition of “on the basis of sex.”
The federal anti-discrimination protection for LGBTQI+ people is critical in Pennsylvania. Pennsylvania (and twenty-six other states) do not have anti-discrimination protections for LGBTQI+ people at the state level and therefore must rely on strong federal protection.
Rule Now Require Language Assistance for Individuals with Limited English Proficiency
When receiving care, everyone should be informed of their options and be able to ask questions and seek further assistance. This is all too often not the case for people who do not speak English as their first language. During Community Conversations, we heard from Latinx Pennsylvanians who reported frustration with trying to find culturally competent care.
The 2022 Proposed Rule includes a requirement for providers to take reasonable steps to provide meaningful access to each LEP individual and notify them of their rights to receive communication assistance. These changes are an important advancement for providing care to immigrant populations, who are already vulnerable to inadequate health care.
Yet, the significant shortage of bilingual providers and medical interpreters in the healthcare system is a problem. Language-related barriers increase the risk of miscommunication and patient safety. Gabriela Jenicek, the director of language services at Children’s Hospital of Philadelphia (“CHOP”) recalls one young mother-to-be who was referred to them by another clinic. The clinic had allowed the woman’s sister-in-law to act as her interpreter. While the providers at the clinic told the sister-in-law the woman’s fetus was at risk of heart damage, the message was never relayed to the patient.
Even filing a complaint with the HHS also requires communication skill or related assistance. HHS received 210 language-access complaints during the five-year span ending in 2017.
Unfortunately, there is no dedicated funding available to covered entities to take reasonable steps to provide meaningful access to individuals with LEP. And some states do not elect to reimburse health providers for the cost of translation and interpretation services or receive federal matching funds for these same services. Given that language access benefits bottom lines by saving hospitals costs from readmissions due to poor interpretation services, HHS should consider ways to incentivize covered entities to provide language assistance services.
Intersectional Discrimination is Now Officially Recognized
Intersectional discrimination is when someone suffers some combination of sexism (which includes LGBTQI+ people), racism, xenophobia, ableism, ageism, or other discrimination at the same time.
This is a critical issue in health care. For instance, Black women die from pregnancy or related complications three times more often than white women. The intersection of discrimination based on race and sex (pregnancy) results in inferior health care and an increased mortality rate. This is unacceptable.
The HHS recognizes how intersectionality exacerbates discrimination in health care access and quality. Therefore, the 2022 Proposed Rule provides additional protection for people who experience intersectional discrimination in health care. However, the enforcement scheme tends to silo reporting and enforcement mechanisms based on the type(s) of discrimination experienced, which can dilute the severity of the violation.
The Women’s Law Project strongly supports HHS’s acknowledgement of intersectional discrimination; naming this issue is the first step toward meaningful change. However, we strongly urge the HHS to reimagine how violations involving intersectional discrimination are reported and the HHS’s anti-discrimination requirements are enforced.
A Strong First Step, But Room for Improvement
The HHS’s 2022 Proposed Rule marks a significant step towards providing vulnerable communities with protection against discrimination when accessing health care. The updates are particularly significant for people who can become pregnant, LGBTQI+ people, people with limited English proficiency, people living with disabilities, and people who are at the intersection of these and other marginalized communities. However, there remain places where the 2022 Proposed Rule could be strengthened, and the Women’s Law Project urges the HHS to push forward and fully extend the breadth of the changes they have started.
Women’s Law Project is a public interest law center in Pennsylvania devoted to advancing and defending the rights of women, girls, and LGBTQ+ people in Pennsylvania and beyond. As a non-profit organization, we can not do this work without you. Please consider supporting our work.
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