HHS Issues Guidance To Help Protect Transgender Youth – healthaffairs.org

On March 2, 2022, the Office for Civil Rights (OCR) within the Department of Health and Human Services (HHS) issued new guidance on civil rights protections for transgender youth, their families, and providers that offer gender-affirming health care services. The guidance explains how attempts to restrict access to gender-affirming care, or disclose patient information about this care, could violate federal nondiscrimination protections such as Section 1557 of the Affordable Care Act (ACA) and the Health Insurance Portability and Accountability Act (HIPAA), among others. OCR strongly encourages patients and providers who have faced discrimination to file a complaint here.

OCR was not alone in taking action: other HHS divisions also issued guidance or resources on protecting and supporting transgender young people and their families. For instance, the HHS Administration for Children and Families issued a separate memorandum to agencies that serve LGBTQ young people in the child welfare system. HHS’s announcements were highlighted in a statement from President Biden focused on responding to attacks on transgender youth and their families by leaders in Texas.

What Is Happening In Texas?

The OCR guidance itself does not name Texas, but statements from President Biden and Secretary Becerra do. Why the emphasis on Texas? On February 22, Governor Abbott directed the Texas Department of Family and Protective Services (DFPS), the state’s child welfare agency, to investigate parents and providers in instances where a child receives gender-affirming care as “child abuse.” Governor Abbott’s directive is based on an advisory opinion from Attorney General Paxton that identifies medical procedures and treatments that he asserts qualify as “child abuse” under Texas law.

Under the directive, certain licensed professionals (e.g., doctors, nurses, teachers, etc.) and members of the general public are asked report any known instance of this “abuse”—or face penalties for the failure to do so. DFPS and other state agencies were also directed to follow the Attorney General’s opinion. (Parts of the directive are reminiscent of Texas’ law restricting abortion access, known as S.B. 8, where people are asked to report their neighbors and friends to the authorities for seeking highly personal health care services.)

Attorney General Paxton’s advisory opinion grossly misstates the evidence base for gender-affirming care and repeatedly misrepresents this type of care as elective. As discussed below, every major medical association has affirmed that gender-affirming care is medically necessary to treat gender dysphoria. The advisory opinion also distastefully compares gender-affirming care (the provision of which is highly individualized and done in conjunction with a child’s medical team) to our nation’s horrific legacy of forced sterilization.

Investigations And Lawsuits

Gov. Abbott’s directive has already sparked investigations by state officials into the parents of transgender young people and providers. One family was visited by DFPS on February 25 for interviews, only days after the directive was issued, and asked for access to their child’s medical records.

On March 1, this family, along with a clinical psychologist, sued Governor Abbott and DFPS in state court. The plaintiffs are represented by the ACLU and Lambda Legal. In their complaint, the plaintiffs noted that the directive has caused “terror and anxiety … and singled out transgender youth and their families for discrimination and harassment.” They went to great lengths to describe the medical standards in place for transgender youth by heavily citing clinical guidelines from the Endocrine Society and the World Professional Association for Transgender Health (WPATH). They also explained that puberty-delaying treatment is reversible and does not cause infertility (contrary to assertions in the advisory opinion) and underscored the benefits and strong evidence base for gender-affirming care.

On March 2, a Texas judge blocked DFPS from investigating the plaintiffs by issuing a temporary restraining order against the agency. This protects these parents and provider, but the court’s order is limited only to those plaintiffs already under investigation. The court did not set aside Governor Abbott’s entire directive, at least not yet—the court scheduled a hearing for March 11 to assess whether to block the directive more broadly.

A Note On Gender-Affirming Care

It is the overwhelming consensus among medical experts that gender-affirming care is medically necessary, effective, and safe when clinically indicated to alleviate a medical condition known as gender dysphoria (formerly known as gender identity disorder). According to the American Medical Association, untreated gender dysphoria “can result in clinically significant psychological distress, dysfunction, debilitating depression and, for some people without access to appropriate medical care and treatment, suicidality and death.” Contrary to Attorney General Paxton’s views, numerous studies and meta-analyses—including a comprehensive literature review on the issue—have demonstrated the significant benefits of gender-affirming care. This data and evidence base is cited in the lawsuit noted above.

WPATH has long maintained a set of evidence-based standards of care for transgender people. And experts on minor health like the American Academy of Pediatrics, the American Academy of Child and Adolescent Psychiatry, the American Counseling Association, the American Psychiatric Association, the American Psychological Association, the Endocrine Society, the National Association of Social Workers, the Pediatric Endocrine Society, and the Society for Adolescent Health and Medicine have issued statements and guidelines in support of access to care for transgender people, including young people. There are a range of clinical care programs that provide age-appropriate gender-affirming care for young people across the country, without the devastating impacts that Texas officials claim.

Major payers also view gender-affirming care as medically necessary. In a recent letter to federal officials, AHIP emphasized its strong support for “ensuring that appropriate gender-affirming care is available and accessible to enrollees.” This is in addition to prior support for full nondiscrimination protections for LGBTQ people. Fortune 500 companies and state Medicaid programs have also adopted clear policies to require the coverage of gender-affirming care.  

OCR’s Guidance

OCR’s guidance from March 2 underscores the importance of medically appropriate and necessary gender-affirming care for transgender young people and explains how efforts to restrict access to this type of care, like those announced by Texas, could violate federal civil rights laws and privacy protections. Care denials, restrictions on care, and reporting on those who access care could violate Section 1557 of the ACA, Section 504 of the Rehabilitation Act, the Americans with Disabilities Act, and HIPAA. OCR urges families and providers who have faced discrimination to file a complaint with OCR.

Per OCR, attempts to restrict or characterize gender-affirming care as “abuse” are dangerous, can discourage providers from offering this life-saving care, and will negatively affect the health and well-being of transgender and gender nonconforming youth. Overall, the goal of the guidance is to help ensure that young people can access care without discrimination and to respond to fear from families and providers about attempts to portray gender-affirming care as “abuse.”

Section 1557

Section 1557 is the ACA’s primary nondiscrimination provision and applies to any program or activity that is administered by a federal agency or any entity established under Title I of the ACA. Under Section 1557, an individual cannot be excluded from participation in, denied the benefits of, or subjected to discrimination based on race, color, national origin, age, disability, or sex by any health program or activity of which any part receives federal financial assistance. Per prior guidance from 2021, HHS interprets sex discrimination to include discrimination based on sexual orientation and gender identity.

What does sex discrimination mean in the context of actions like those in Texas? First, federally funded entities covered under Section 1557 cannot categorically refuse to treat someone based on their gender identity. Thus, someone cannot be turned away from care, including gender-affirming care, just because they are transgender. Second, covered entities cannot restrict a person’s ability to receive medically necessary gender-affirming care solely because of their gender identity or sex assigned at birth. Efforts to restrict this type of care—by, say, preventing a doctor from providing or prescribing gender-affirming care—likely violate Section 1557.

As an example, a doctor or staff member that reports a parent or child to state authorities—after, say, the family comes in for a consultation for gender-affirming care—may violate Section 1557 if the doctor or facility receives federal financial assistance. Patients who have been denied care based on gender identity or providers who have been restricted from providing care based on a patient’s gender identity can file a complaint with OCR.

Section 504

There may be further, independent protections for transgender young people under Section 504 of the Rehabilitation Act and Title II of the Americans with Disabilities Act. Section 504 prohibits discrimination based on disability in programs or activities that receive federal financial assistance, and Title II protects qualified individuals with disabilities from discrimination in state and local government programs. Gender dysphoria may qualify as a disability under these laws. Thus, restrictions that prevent individuals from accessing medically necessary care based on gender dysphoria, a gender dysphoria diagnosis, or perceived gender dysphoria may also violate Section 504 and Title II of the ADA.

HIPAA

HIPAA, among other provisions, requires health care providers and other entities to protect sensitive patient health information from being disclosed without a patient’s consent or knowledge. Here, OCR cautions that disclosing protected health information—such as a patient’s receipt of gender-affirming care—without a patient or guardian’s consent may violate HIPAA. Said another way, HIPAA prohibits the disclosure of protected health information about gender-affirming care without consent except in limited circumstances.

One of these limited circumstances—where disclosure may be possible without a patient’s consent—is when disclosure is required under another law. Here, OCR reminds covered entities that HIPAA permits, not requires, disclosure without consent. OCR also notes that the “required by law” exception is narrow, both in when it is required and the scope of the disclosure. Disclosure is permissible when “required by law” only in response to “a mandate contained in law that compels an entity to make a use or disclosure of PHI and that is enforceable in a court of law.” Examples outlined in federal regulations include court orders, subpoenas or summons, grand jury requests, or lawsuits. The scope of the disclosure is also narrow and should be limited only to the relevant requirements of the law; disclosures that go beyond what is required may violate HIPAA.

OCR’s guidance serves as a reminder that covered entities are merely permitted (not required) to disclose a patient’s protected health information without their consent, including in response to Gov. Abbott’s directive. The lawsuit noted above also argues that neither Gov. Abbott’s directive nor Attorney General Paxton’s advisory opinion are legally binding and that this new purported definition of “child abuse” is inconsistent with state law, was not adopted using proper procedures, and is unconstitutional. These arguments raise real questions about whether any disclosure of sensitive patient information about gender-affirming care is truly “required by law” for purposes of this narrow HIPAA exception (and in general), such that providers and others should feel compelled to comply with it.

Overall, OCR cautions covered entities against voluntarily reporting protected health information related to gender-affirming care to state authorities except in the narrowest of circumstances and only when truly compelled to comply with a legally enforceable requirement. Providers who are concerned about their reporting obligations should seek legal advice. As with the statutes noted above, OCR encourages families to file a complaint with OCR if there has been a violation of a patient’s health privacy rights.

Remedies

Complaints are important to enable OCR to investigate and enforce the laws noted above based on specific facts and circumstances. While the agency has other tools (such as compliance reviews), complaints will help OCR target its action, conduct thorough investigations, and maximally enforce federal laws. Complaints could also inform forthcoming rulemaking on Section 1557.

Specific complaints will also make clearer which federal laws apply to a given situation. While the laws cited above—Section 1557, Section 504, Title II, and HIPAA—are broad and powerful, they vary in scope, and each may not apply in every circumstance. In the context of Section 1557, questions about the scope of the law are exacerbated by dueling regulatory interpretations over who qualifies as a covered entity. There could, for instance, be questions about whether these laws theoretically apply to DFPS itself—whereas a specific complaint could underscore why these federal laws apply.

Setting aside these types of questions, OCR makes clear that federal protections apply to health care providers that receive federal funding. Medical facilities, for instance, should not direct doctors or staff to stop providing gender-affirming care or turn patients away. If OCR received a complaint about a situation like this, what might happen? The remedy would depend on the circumstances, but OCR would investigate and work to achieve voluntary compliance (through, say, a resolution agreement). Absent voluntary compliance, a violation of these laws would enable OCR to take enforcement actions such as levying financial penalties, terminating federal funding, or referring the entity to the Department of Justice for further legal action.

There is prior precedent for investigating state agencies in response to complaints about discrimination. A prominent recent example was a dispute between HHS OCR and California. In 2020, OCR issued a notice of violation to California, asserting that a state law requiring health insurance plans to cover abortion violated federal conscience protections. OCR later moved to disallow $800 million annually in California Medicaid funds, an action that now-Secretary of HHS (then-Attorney General of California) Becerra defended against. You can see other examples of action against state agencies, albeit under different laws, in recent resolution agreements in Alabama, Pennsylvania, and Oregon.

The Biden administration may also have other options at its disposal to protect transgender youth, although it is not clear what would be the most effective. Among other options, the Administration for Children and Families could open a compliance review for DFPS. That could lead to an improvement plan and potentially financial penalties. The Department of Justice could try to sue Texas, as the agency recently did over S.B. 8; alternatively, the department could at least file a “statement of interest” in the pending litigation, as it has done in other litigation on gender-affirming care for young people, such as the lawsuit over Arkansas’ legislative ban on gender-affirming care for minors.