Trump HHS Proposes Eliminating Most Non-Discrimination Protections of Section 1557

By: Jen Laws, Board Member, ADAP Advocacy Association, and HIV/transgender health advocate

On June 14th, 2019, the Trump administration issued a near complete regulatory overhaul of the Patient Protection and Affordable Care Act’s (ACA) non-discrimination provisions known as Section 1557. The issued proposed rule began a 60-day public comment period, ending on August 13th, 2019.

Photo Source: thompsoncoburn.com

The public may submit comment using the following link to the Federal eRulemaking Portal: https://www.regulations.gov/comment?D=HHS-OCR-2019-0007-0001.

Or by regular, overnight, express mail, hand delivery or courier to the following address:

U.S. Department of Health and Human Services
Office for Civil Rights
Attn: Section 1557 NPRM, RIN 0945-AA
Hubert H. Humphrey Building, Room 509F
200 Independence Ave. SW
Washington, DC 20201

For a background, please visit our previous blogpost here (Laws, 2018): https://adapadvocacyassociation.blogspot.com/search?q=1557.

Stating the Trump Administration’s proposed changes to Section 1557 are a revision would be misleading. A lie actually. The proposed rule seeks to so drastically change the regulatory interpretation and applicable federal agency guidance so much, that one can only adequately describe the changes as eliminating any meaningful sense of protection offered by the Obama Administration’s interpretation.

The case made by the U.S. Department of Health & Human Services ("HHS") for these changes is embarrassingly weak. Relying near exclusively on the Trump Administration’s own refusal to defend the regulation in Franciscan Alliance, Inc. et al v. Burwell, which resulted in an unchallenged injunction issued by Judge Reed O’Connor of the U.S. District Court for the Northern District of Texas and a second ruling from a federal district in North Dakota - which relied on the Franciscan Alliance decision. By taking an intentionally flawed approach, the listed changes would have a wide impact, including eliminating protections affecting transgender people, women, reproductive care in general, people living with HIV, people with disabilities, people who speak and read any language other than English as a primary language, and more. The move builds upon the Trump Administration’s efforts to not only reshape the judicial landscape in a politically motivated fashion but to do so with precise aims, including eliminating the ACA entirely (see Texas v. United States, another Reed O’Connor ruling – this should tell you something about “court shopping”).

If you haven’t read Nicholas Bagley’s Atlantic piece, “Rise of the Know-Nothing Judge”, you really should (Bagley, 2019). This legal philosophy is being leveraged specifically by both the judges hearing the cases and the political appointments seeking to eliminate these necessary protections in healthcare. The story goes fairly simply as “we couldn’t possibly know what Congress was thinking (despite recent and public statements to the fact on certain votes and legislation) because it wasn’t spelled out explicitly and narrowly.” This is an effort to push issues of patient protections (and other issues) to a dysfunctional Congress. This approach also explicitly seeks to push legislation, which by its very nature is not supposed to be prescriptive, into an exceptionally prescriptive design or risk non-enforcement. Overall, the process removes the role of government in regulating and protecting tax payers entirely when applied broadly. This Administration will achieve the goal of eliminating necessary government intervention by weakening public trust and establishing court precedent to inaction.

In the case of a Section 1557 re-write, HHS ignores previous precedents that stretch back 30 years (Price Waterhouse v. Hopkins) to rulings as recent as 2017 (Prescott v. Rady Children’s Hospital) which rely on the plain language of the statue due to previous precedent, not the regulatory interpretation provided by the Obama Administration. HHS goes on further to ignore recent rulings both on issues of sex stereotyping as a form of sex-based discrimination and gender identity as an issue of sex by the nature of gender identity being a part of our medical definition of sex. HHS expands further by stating that even if gender identity were an issue of sex, “Religious Freedom” and its own “Conscience” regulations should allow all entities governed by HHS regulations to deny coverage and care even on the basis sex. As such, that denial of care extends in such a way that would eliminate the pre-existing conditions protections of women in the case of pregnancy history, termination of pregnancy, false pregnancy, and genetic history. Instances of care denial that were routine prior to the ACA’s pre-existing conditions protections requirements.

Kaiser Family Foundation argues the explicit nature of these interpretations including non-protection of sex stereotyping could result in antiretroviral treatment being denied coverage by an insurance company or a provider refusing to provide care to a person living with HIV because of assumed sexual activities with a same-sex partner. The interpretation removes the right of private action so coveted by patient advocates when section 1557’s original interpretation was written; meaning patients would no longer have either an administrative path to seek remedy or an explicit endorsement of HHS to go the path of the courts to seek remedy when harmed by care and coverage denials (Musumeci, 2019).

If this sounds like a wild, wild west situation of health care and insurance structures prior to the ACA, it is. That’s the goal, the campaign promise of Donald J. Trump. While the ACA certainly needs some work, consistently, the American public, regardless of political affiliation has polled support of health care protections the ACA provides. Like a mob thug in sneaking into a back alley, this Administration is using every angle to knee cap the protections afforded by the ACA, with intentional efforts to harm those who need those protections the most.

Lastly, of particular note, HHS states in the proposed regulation, as it has in every other regulatory change affecting civil rights protections, that disparate impact does not equate to intentional discrimination. Having historical data, predictive data that already guides our funding appropriations and distribution that is so pin-point precise the government – nay, THIS Administration relies on some of the very same data to focus funding its own Ending The Epidemic plans (HIV.gov, 2019), how can we not interpret knowingly and intentionally ignoring the same data as “unintentional” when other regulatory moves by this Administration seek to allow providers and insurers to deny care and coverage to PLWH just a whim?

We live in the day and age of Big Data, disparate impact is now intentional impact.

This effort to harm is intentional.

Comment today to ensure your voice is heard! Call your Congress member. Support your patient advocacy organizations by dollar and deed. We’re in a fight for our lives here, one court ruling and one regulation at a time.

References:

• Bagley, Nicholas (2019, July 15). Texas v. United States: Rise of the Know-Nothing Judge. The Atlantic. Retrieved online from https://www.theatlantic.com/ideas/archive/2019/07/texas-v-us-rise-know-nothing-judge/593959/
• HIV.gov (2019, June). Ending the HIV Epidemic: A Plan for America. Retrieved online from https://files.hiv.gov/s3fs-public/ending-the-hiv-epidemic-flyer.pdf
• Laws, Jen (2018, February 22). Trump & HHS Sanction Healthcare Discrimination. ADAP Blog. Retrieved online from https://adapadvocacyassociation.blogspot.com/2018/02/trump-hhs-sanction-healthcare.html
• Musumeci, MaryBeth, et. al. (2019, June 1). HHS’s Proposed Changes to Non-Discrimination Regulations Under ACA Section 1557. Henry J. Kaiser Family Foundation. Retrieved online from https://www.kff.org/disparities-policy/issue-brief/hhss-proposed-changes-to-non-discrimination-regulations-under-aca-section-1557/
• United States District Court for the Southern District of California (2017, October 13). Case No.: 16-cv-02408-BTM-JMA. Retrieved online from https://www.ebglaw.com/content/uploads/2017/10/Prescott-v.-Rady-Children_s-Hospital-San-Diego_-2017-U.S.-Dist.-LEXIS-160259.pdf

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Trump Administration Seeks to Re-Write Portions of 1557 Final Rule

By: Jen Laws, Board Member, ADAP Advocacy Association, and HIV/transgender health advocate

When the Patient Protection and Affordable Care Act ("ACA"), or commonly called Obamacare, passed in 2010, of hot but limited debate was the potentially expansive nature of Section 1557 of the legislation. Considered to be a broad expansion of non-discrimination protections in health care, Section 1557 “prohibits discrimination on the basis of race, color, national origin, sex, age, or disability in certain health programs and activities.” Section 1557 is the first federal civil rights law to prohibit discrimination on the basis of sex in covered health programs and activities.

Despite citation of enforcement of this provision since 2010, the Obama Administration would wait until September 15, 2016 to issue a Final Rule outlining exactly how Section 1557 should be applied. Of particular note in the 380+ page rule, the U.S. Department of Health & Human Services ("HHS") gave guidance on translation service requirements, disability accommodation requirements, quality of care with regard to pregnancy history, and classified transition related care for transgender people as care protected on the basis of sex. HHS would cite certain legal precedent, including the Supreme Court decision in Price Waterhouse v. Hopkins (1989) and subsequent case law pertaining to “sex stereo typing” as it relates to gender identity and expression. In a somewhat surprisingly broad application, HHS’ Final Rule not only stated ability for government enforcement of Section 1557 but the right of private action by aggrieved patients. In short, patients were being extended the opportunity to sue certain private health care and insurance providers for refusing care to transgender people. To say this was a “big deal” would be an understatement. Transgender advocates went WILD with joy and celebration of a major win.

Vast portions of the Final Rule were to go into effect on January 1, 2017. On December 31, 2016, at the behest of five states and a group of Christian identified medical providers (including dentists…I’m not kidding), Judge Reed O’Connor of the U.S. District Court for the Northern District of Texas issued an injunction against implementation of portions of Section 1557 regarding transgender patient care protections and abortion related care. Judge O’Connor has a nasty history of him issuing rulings that marginalize LGBTQ Americans. This case, Franciscan Alliance, Inc. et al v. Burwell, was no different. The injunction prohibited the government from implementing and enforcing the Final Rule. It did not, however, prevent patients from seeking suit should they experience discrimination.HHS would reverse the position of defending the Final Rule after the administrative transitioned over to Donald J. Trump. In July, 2017 HHS submitted a brief seeking a stay while it “reconsiders” the policy, indicating an intention by new HHS leadership to walk back the nature of the protections offered by Section 1557. The stay was granted. It is of important note that HHS’ Office of Civil Rights is now lead by Roger Severino, an appointment widely opposed by equality organizations on the basis of Severino’s well documented and very public statements in support of discrimination against LGBTQ people.

The change has been haunting transgender advocates for almost a year. And here’s why:

• Broadly, prior to the ACA, transgender identity was considered a “pre-existing condition”. The prohibition of refusal of coverage on the basis of a pre-existing condition meant transgender people, for the first time, could not be refused coverage at the application process. Still, transgender people commonly faced notation that plans did not cover transition related care. The Obama Administration's version of the Final Rule explicitly outlined that insurance companies could no longer continue the practice of excluding transition related care, impose burdensome requirements to qualify for coverage through discriminatory plan design, or impose burdensome appeals processes due to automatic denials of care because of a “sex mis-match” in approval systems. While HHS was not prescriptive in telling insurance companies how to address these issues as the most common barriers to coverage transgender people face, the agency was clear: “care delayed is care denied”.

• Another unfortunately common experience transgender people faced and continue to face is “transgender broken arm syndrome”, a situation where a transgender person seeks routine medical care unrelated to their transition care but receives less than standard quality of care due to bias of providers. A real-life example I encountered in my advocacy includes a transgender woman seeking emergency care for trouble breathing. The patient was asked about her current medication use, including an estrogen, wherein she disclosed her identity as transgender. She was given two breathing treatments and sent home. The patient was not given a chest x-ray or other diagnostics to determine appropriate care. The patient returned the emergency room a few days later with pneumonia, a diagnosis she only received after having to insist on a chest x-ray. The Final Rule under the Obama Administration considered this type of treatment, no matter the setting, to be discriminatory in nature and a violation of the protections afforded under Section 1557.

• According to the 2015 US Trans Survey, a work product from the National Center for Transgender Equality, 25% of transgender people experienced being denied routine or transition related care by their insurance provider, more than half of those seeking coverage for transition-related surgery were denied, and 25% of those seeking coverage for hormone replacement therapy were denied. The same survey also found that 33% of respondents who saw a healthcare provider experienced refusal of care, being verbally, physically, or sexually assaulted, or having to teach their providers about transgender people in order to receive appropriate care. Because these experiences are known among this community, 23% of respondents did not see a medical provider when the needed to out of fear of being mistreated. These findings are particularly worse for transgender people of color. Compounding fears of discrimination, potential refusal of coverage, and discrimination in employment, 23% of transgender people did not seek care when they needed it because they could not afford care.

• In 2011, the Centers for Disease Control & Prevention ("CDC") revised HIV surveillance to include transgender people as a target population. In 2017, the CDC acknowledged transgender people as underserved and interventions for this community as understudied. The 2015 US Trans Survey found a self-reported rate of HIV among transgender populations of 1.6%, or FIVE TIMES that of the general population, with a self-reporting rate of 19% among Black transgender women.

• In October 2017, HHS issued a new Conscience Rule, specifically targeting abortions, assisted suicide, and transition-related care. While not even daring to mention the word “transgender”, the agency couched the discriminatory Final Rule under the language of “sterilization”. Transgender advocates rightly fear the impact of codifying sanctioned discrimination in health care under the current administration. Rolling back the reach of Section 1557 as a protective provision would open the flood gates of claims of “religious liberty” to deny care and coverage to transgender people.

HIV service organizations and advocacy groups hold a unique opportunity to advocate for this highly marginalized intersection of HIV-positive, transgender people. As transgender advocacy organizations take to legal action to slow the tide of discriminatory action by the current Administration, HIV advocates would do well to seek ways to support the fight ahead, institute model policy for both transgender clients and employees, and work to provide a backbone of social and medical support for this community.

From community based agencies to State AIDS Drug Assistance Programs, identifying and educating legislators to advocating for expansive formularies, covering transition related HRT in both Ryan White Part A and B (ADAPs), the power of partnered advocacy cannot be understated. We cannot “get to zero” without addressing the needs of transgender people and we cannot address those needs without strong protections, combating systemic discrimination against transgender people.




Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.