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August 13, 2019

VIA ELECTRONIC SUBMISSION

Secretary Alex Azar
U.S. Department of Health and Human Services
Herbert H. Humphrey Building, Room 509F
200 Independence Avenue SW
Washington, DC 20201

RE: Docket ID HHS-OCR-2019-0007, RIN 0945-AA11, Nondiscrimination in Health and Health Education Programs or Activities

Dear Secretary Azar:

The Center for Medicare Advocacy (“Center”) appreciates the opportunity to submit these comments in response to the Department of Health and Human Services’ (“HHS”, “Department”) and the Center for Medicare and Medicaid Services (“CMS”) Notice of Proposed Rulemaking (“proposed rule,” “NPRM”) to express our concerns with the proposed rule entitled “Nondiscrimination in Health and Health Education Programs or Activities,” published in the Federal Register on July 14, 2019.

The Center, founded in 1986, is a national, non-partisan education and advocacy organization that works to ensure fair access to Medicare and to quality healthcare. At the Center, we educate older people and people with disabilities to help secure fair access to necessary health care services. We draw upon our direct experience with thousands of individuals to educate policy makers about how their decisions affect the lives of real people. Additionally, we provide legal representation to ensure that people receive the health care benefits to which they are legally entitled, and to the quality health care they need.

The Health Care Rights Law (Section 1557 of the Affordable Care Act, or ACA) prohibits discrimination in health care on the basis of race, color, national origin, sex, age, and disability. We strongly oppose the NPRM provisions that seek to eliminate and limit the law’s protections for individuals who are limited English proficient, LGBTQ persons, persons with disabilities and chronic conditions, and persons needing reproductive health services, as well as individuals whose identities intersect multiple protected classes. HHS underwent an extensive process to develop implementing regulations for Section 1557, including a Request for Information, proposed rule, and final rule. HHS considered more than 24,875 public comments submitted for the 2016 rule. There is no reason to reopen this rule and ignore the reasoned process HHS has already undertaken.

The Proposed Rule Would Harm Older Adults’ Meaningful Access to Care and Nondiscrimination Protections

We oppose the proposed repeal of the requirement that covered entities provide a notice of nondiscrimination that informs individuals of their legal rights. Without the notice, older adults of all backgrounds and identities will be less likely to know what to do if they experience discrimination, including that they have the right to file a complaint and how to file such a complaint.  Those who need language services and auxiliary aids have less reason to know that language services and auxiliary aids and services are available and how to request them.

The Proposed Rule Would Greatly Harm Older Adults Who Are Limited English Proficient

We strongly oppose the proposal to eliminate the 1557 rule’s nondiscrimination notice, taglines and language access plan provisions. These provisions are key to ensuring seniors and other individuals who are limited English Proficient (LEP) can access care and services, receive important healthcare information in a language they understand, and are informed of their rights and how to enforce them.

It is especially critical that older adults have robust language access resources and protections from discrimination. Due to their age, physical limitations, and other factors, it is unrealistic to expect many LEP seniors to attain full English proficiency.

Specifically in the health care context, four million Medicare beneficiaries – older adults and people with disabilities – are limited English proficient, and 12% of Medicare beneficiaries living in the community report that English is not their primary language. Reports from the Office of Minority Health estimate that almost 2 million Medicare beneficiaries speak languages other than English or Spanish, including over 200,000 beneficiaries who speak Chinese, over 150,000 who speak Vietnamese, and over 140,000 who speak Tagalog. Over 1.8 million LEP seniors and people with disabilities are also low-income and rely on the tagline and notice requirements in the 2016 implementing regulations to get the information they need across both Medicaid and Medicare.

Due to the nature and importance of health care and the consequences that can result from language barriers, the current regulations appropriately include specific requirements to ensure that covered entities understand their obligations to ensure meaningful access and have clear instructions on how to comply with those obligations. We support this approach as it builds on, and is consistent with, Title VI and existing HHS LEP Guidance and offers additional recommendations. We also emphasize that, consistent with the current rule, discrimination on the basis of national origin, including limited English proficiency (LEP), creates unequal access to health. LEP is often compounded with the “cumulative effects of race and ethnicity, citizenship status, low education, and poverty,” resulting in more barriers to access.[1]

Visiting health care facilities and agencies that administer health programs and activities are often uncomfortable for individuals with LEP who are “unfamiliar with [the system’s] cultural norms, vocabulary, and procedures.”[2] Unfamiliarity with the health care system often results in inaction that could compromise a basic standard of living for individuals and families. Furthermore, the lack of language assistance services negatively impacts communities at large, not just LEP individuals. When interpreter services are inadequate, children often serve as language brokers for their parents.[3]

The cost of these barriers to care for individuals with LEP can be deadly.

The Proposed Rule Would Greatly Harm LGBTQ Older Adults

We strongly oppose the proposed rule’s elimination of the definitions of sex, gender identity, and references to sex stereotyping. The current regulations make clear that the law’s prohibition on discrimination on the basis of sex includes discrimination on the basis of gender identity and sex stereotyping. The rules’ protections for transgender older adults include requiring providers to treat individuals consistent with their gender identity and prohibiting health plans from denying medically necessary care such as a prostate exam for a trans woman or a hysterectomy for a trans man.

By proposing to eliminate these definitions and provisions providing explicit protections for transgender individuals, HHS not only reverses existing regulations but also runs counter to nearly two decades of caselaw that say federal sex discrimination laws protect transgender communities.

Moreover, the rollback of these protections will increase health disparities. LGBTQ older adults experience pronounced health disparities and higher poverty rates compared to their heterosexual and cisgender peers due in large part to historical and ongoing discrimination.

The Proposed Rule Would Harm People with Disabilities & Chronic Conditions

We oppose HHS’s proposal to eliminate the rule that prohibits health insurers from using discriminatory benefit design and marketing. Section 1557 and current regulations prohibit health insurance companies from discriminating through marketing practices and benefit design. These protections are especially important for people with disabilities and chronic conditions. However, the proposed rule seeks to exempt most health insurance plans from Section 1557’s nondiscrimination protections. Moreover, it would eliminate the regulation prohibiting discriminatory benefit design and marketing. Together, these changes could lead to health insurers excluding benefits or designing their prescription drug formularies in a way that limits access to medically necessary care for those living with disabilities and other chronic conditions. Based on our extensive experience assisting Medicare beneficiaries, we recognize and appreciate the importance of Medicare’s non-discrimination provisions that apply to Medicare Advantage (MA) and Part D plans.  For example, 42 CFR §422.100(f)(2) mandates CMS oversight to ensure that “MA organizations are not designing benefits to discriminate against beneficiaries, promote discrimination, discourage enrollment or encourage disenrollment, steer subsets of Medicare beneficiaries to particular MA plans, or inhibit access to services.” Such critical protections should apply to coverage outside of the Medicare program.

We request that HHS retain the current definition of a “covered entity.” The proposed rule seeks to radically narrow the scope and applicability of Section 1557, contrary to the plain meaning of the statute. Congress made clear in Section 1557 that if one part of an entity receives federal financial assistance, the entire entity should be covered. It also clearly intended Section 1557 to address discrimination in health insurance.

We disagree with HHS’ proposal to delete the current requirement that covered entities provide notice, with every significant communication to individuals, that they do not discriminate based on disability or other prohibited grounds; that they provide auxiliary aids and services for people with disabilities, including qualified interpreters and information in alternate formats; and how to obtain those auxiliary aids and services. Without such  notice, members of the public will have limited means of knowing that auxiliary aids and services are available, how to request them, what to do if they face discrimination, and their right to file a complaint. As HHS itself notes in the proposed rule, “repealing the notice of nondiscrimination requirement may result in additional societal costs, such as decreased utilization of auxiliary aids and services by individuals with disabilities due to their reduced awareness of such services.” We agree, and therefore object to removing this requirement.

HHS should retain strong, clear language prohibiting insurance companies from discriminating on the basis of race, color, national origin, sex, age, or disability in a number of areas, including marketing plans, designing benefits, coverage claims, or imposing additional costs. These protections are especially important for people with disabilities and those with serious or chronic conditions. Eliminating this regulatory provision could result in health insurers illegally excluding important benefits, designing their prescription drug formularies in a way that limits access to medically necessary care, or cherry-picking healthier enrollees through marketing practices. It may make it harder for people who experience discrimination to enforce their rights through administrative and judicial complaints.

We oppose HHS’ proposal to delete regulations that prohibit discrimination on the basis of association with a protected class. This will create uncertainty and confusion regarding the responsibilities of providers and the rights of persons who experience discrimination, and inconsistencies with other regulatory requirements that entities are subject to, including the Americans with Disabilities Act and Section 504 of the Rehabilitation Act.

We also believe that HHS incorrectly limits the remedies available under Section 1557 in the proposed changes to § 92.301 (newly designated § 92.5). One of the goals of Section 1557 was to build and expand on prior civil rights laws such that individuals seeking to enforce their rights would have access to the full range of available civil rights remedies and not be limited to only the remedies provided to a particular protected group under prior civil rights laws. This is why Section 1557 expressly provides individuals access to any and all of the “enforcement mechanisms provided for and available under” the cited civil rights statutes, regardless of the type of discrimination. The proposed rule makes it harder and more complicated to address prohibited discrimination. HHS should retain current § 92.301.

Conclusion

We appreciate the opportunity to submit these comments. For additional information, please contact David Lipschutz, Senior Policy Attorney, dlipschutz@medicareadvocacy.org or Kata Kertesz, Policy Attorney, kkertesz@MedicareAdvocacy.org, both at 202-293-5760.

 

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[1] Kaiser Family Foundation, Overview of Health Coverage for Individuals with Limited English Proficiency, at 3, http://kff.org/disparities-policy/fact-sheet/overview-of-health-coverage-for-individuals-with/.
[2] Vikki Katz, Children as Brokers of their Immigrant Families’ Healthcare Connections, at 24 (2014), https://academic.oup.com/socpro/article-abstract/61/2/194/1672037?redirectedFrom=fulltext.
[3] Id. at 31.

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