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Health and Access to Care and Coverage for Lesbian, Gay, Bisexual, and Transgender (LGBT) Individuals in the U.S.

Impact of Changes in the Legal and Policy Landscape on Coverage and Access to Care

In addition to specific health needs, the health of and access to care for LGBT communities is shaped by federal and state policies on insurance, compensation and benefits, and marriage. The passage of the ACA in 2010, the Supreme Court’s ruling overturning DOMA in 2013, and subsequent ruling in Obergefell in 2015 (guaranteeing the right to same-sex marriage nationally), have significantly affected access to care and coverage for LGBT individuals and their families, expanded nondiscrimination protections, increased data collection requirements, and supported family caregiving. States and private organizations have also moved to add nondiscrimination protections and enhance coverage for LGBT individuals. While the Obama Administration supported expansion of many of these protections, the Trump Administration has sought to scale some of them back.

Impact of the ACA

The ACA makes far-reaching changes in health coverage and delivery of care for millions, including LGBT individuals. For LGBT populations, three major areas are of particular saliency: 1) expanded access to coverage and insurance market reforms, 2) “nondiscrimination” protections, and 3) requirements for data collection and research.

Coverage

  • The ACA extends coverage to millions of uninsured persons through the expansion of Medicaid, in states that choose to expand, as well as the creation of new federally subsidized health insurance marketplaces in all states. In states that expanded their Medicaid programs, a new pathway to Medicaid eligibility is available based solely on income and immigration status, and is available to most individuals with incomes below 138% FPL regardless of their family or disability status. Uninsured individuals not eligible for Medicaid, can purchase coverage in insurance marketplaces, with subsidies available to most with incomes between 100% and 400% of FPL to help offset the costs of premiums. Additional subsidies are available to those between 100% and 250% FPL to help with other out-of-pocket costs.
  •  As of January 2014, individuals can no longer be denied most private market insurance due to a pre-existing condition, such as HIV, mental illness, or a transgender medical history. Additionally, new private plans are now required to cover recommended preventive services without cost sharing. This includes screenings for HIV, STIs, depression, and substance use. And, those who gain coverage through the Medicaid expansion or in the marketplace will have coverage for a set of essential health benefits, including prescription drugs and mental health services.
  •  A recent Kaiser Family Foundation study found that since implementation of the ACA, rates of uninsurance decreased significantly among LGB adults (dropping from 19% in 2013 to 10% in 2016), representing an estimated 369,000 fewer uninsured LGB individuals. In addition, Medicaid coverage increased (rising from 7% to 15% during the same period), representing an estimated 511,000 more LGB individuals with Medicaid coverage. These coverage changes were similar to those seen in the heterosexual population.1

Nondiscrimination Protections

  • As described above, bias and discrimination in the health care system have been an unfortunate reality for many LGBT people.2 In addition to provider level discrimination, prior to the ACA, some policies in the insurance and financing system have disproportionately affected LGBT people, including pre-existing condition clauses permitting plans to deny insurance to people with conditions such as HIV, mental illness, or to transgender individuals, who may require specific health care services.3 Furthermore, some plans interpreted these exclusions broadly and used them to deny transgender people coverage for services that are not related to gender transition.4
  •  The ACA and subsequent federal regulations implementing the ACA prohibit such discrimination in many aspects of health care. For instance, federal regulations issued by the Department of Health and Human Services (DHHS) governing health insurance marketplaces5 as well as regulations governing any health plan offering essential health benefits6 bar discrimination in insurance provision based on sexual orientation and gender identity.
  •  The law (and implementing regulations) includes additional protections under Section 1557 including the prohibition of discrimination based on sex, defined to include gender identity and sex stereotypes, in any health program receiving federal funds (such as Medicaid, Medicare, and providers who receive federal funds). However, as part of an ongoing lawsuit, a federal court has issued an injunction halting enforcement of this provision’s protections around gender identity (and termination of pregnancy). HHS is currently reconsidering the final implementing rule that clarified these protections and has sent a draft proposed rule to OMB (a final step in the rulemaking process). Notably, while the injunction remains in place, it applies only to HHS’s authority to enforce this part of the regulation. Covered entities must still comply with the law and those that do not could be liable if someone files a discrimination claim in court under Section 1557 (rather than to seek remedy through HHS’ Office of Civil Rights (OCR)).7
  •  Federal regulations governing health plan marketing practices prohibit health insurance issuers offering non-grandfathered insurance coverage in the group or individual markets (including health care marketplaces) from employing marketing practices or benefit designs that discriminate on the basis of certain specified factors, including sexual orientation and gender identity.8 In 2014, the Centers for Medicare and Medicaid Services issued an FAQ9 clarifying that these regulations include coverage of same-sex married spouses.  Per the FAQ, the regulations require health issuers who offer coverage to opposite-sex spouses to also offer coverage to same-sex married spouses, based on state of celebration, as of January 2015  However, the regulation does not apply to employers.
  •  In June 2016, CMS issues a proposed rule that would have required hospitals participating in the Medicare and Medicaid programs to establish non-discrimination policies that include prohibitions on discrimination on the basis of gender identity and sexual orientation.10 Given that the vast majority of hospitals participate in these programs, this rule could have widespread impact by extending protections on the basis of sexual orientation. This could be especially meaningful as sexual orientation protections remain unspecified under Section 1557 and because gender identity protections under 1557 are threatened by ongoing litigation. However, as of April 2018, the Trump Administration has taken no action to finalize this regulation.
  •  Since taking office, the Trump administration has sought to widen the availability of plans that may be exempt from key protections, including non-discrimination protections related to sexual orientation and gender identity. Of particular note, short-term limited duration (STLD) and association health plans may lack the protections or comprehensive design necessary to meet the needs of LGBT populations (and many others as well).11
  •  In addition, the Trump Administration has taken steps to provide conscience and religious exemptions for certain groups that could curb access to care and treatment for LGBT people. In 2018 HHS created a new unit at the HHS OCR called the “Conscience and Religious Freedom Division” with the stated purpose of protecting moral and religious convictions and issued a proposed rule aiming to ensure health care providers may refrain from participating in procedures incongruous with their moral or religious beliefs.12 LGBT advocates have said that the creation of this unit could suggest a move towards shielding healthcare workers from performing certain procedures or treating certain patients, such as transgender patients based on personal moral objections.13

Data Collection

  • The ACA calls for the inclusion of routine data collection and surveillance on health disparities, which HHS and many other groups have recognized includes LGBT populations. Research on LGBT health has increased over time, and HHS has sponsored efforts to collect and report data on LGBT health, as evidenced with the inclusion of LGBT-specific data in publications such as the National Healthcare Disparities Report, the addition of Healthy People 2020 goals to increase routine data collection efforts on LGBT populations, and early efforts of collection and surveillance on sexual orientation and gender identity in national health care surveys.14 In fact, the Obama Administration worked to significantly expand the collection of LGBT data. The number of federal surveys and studies collecting sexual orientation data increased to 12 and 7 of these also collected data on gender identity.15 Since 2013, the NHIS has included a question on sexual orientation. In addition, several agencies within HHS have taken steps toward broader data collection. For example, the CDC has added sexual orientation and gender identity questions to the state-administered Behavioral Risk Factor Surveillance System surveys and the Substance Abuse and Mental Health Services Administration’s National Survey on Drug Use and Health. The Administration on Aging also added a sexual orientation and gender identity questions to the National Survey of Older Americans Act (OAA) Participants. However, it is still not routine for researchers and health data systems to collect and report data by individuals’ sexual orientation and gender identity. Additionally, since taking office, the Trump Administration has sought to roll back data collection on sexual orientation and gender identity in a several surveys including the questions in the OAA survey. It also reversed plans to add such questions to a disability survey out of The Administration for Community Living (ACL). However, in response to pressure from advocacy groups the sexual orientation (but not gender identity) question was added back into the OAA survey. No changes were made to the disability survey.16
  •  At the provider and patient level, some groups advocate for clinicians to collect patient information on sexual orientation and gender identity to better understand an individual’s health profile and needs. Some providers have expressed discomfort with and inadequate knowledge on soliciting this information. Advocates’ recommendations include being direct with patients about why questions on sexual orientation and gender identity are being asked, ensuring that confidentiality will be maintained, informing patients of the right to opt-out, and asking multiple questions to assess both sexual orientation and gender identity.17 In particular, the IOM recommends collecting such data in electronic medical records (EMRs), which are growing in use.18
  •  In October 2016, the NIH formally designated sexual and gender minorities (SGMs) as a health disparity population for research purposes. In doing so NIH recognized the health disparities faced by this population and that “the extent and causes of health disparities are not fully understood, and research on how to close these gaps is lacking.”19

Impact of Supreme Court Rulings

Spousal coverage is an important pathway to insurance and other health benefits and marriage offers legal protections for millions of people, particularly in the context of employer-sponsored health insurance. Until recently, the federal government did not recognize same-sex marriage due to DOMA and several states banned same-sex marriage. This limited the ability of LGBT individuals and families to access a wide range of benefits, including health coverage as a dependent spouse and the ability to make health care decisions for a married partner.  Two rulings by the Supreme Court have fundamentally changed this landscape.

  • United States v. Windsor20: In June 2013, the Supreme Court’s ruling in United States v. Windsor overturned a portion of DOMA and required the federal government to recognize legal same-sex marriages for the first time. The ruling and subsequent Agency policy interpretations and guidance have resulted in expanded access for many LGB families to a range of benefits, including dependent health coverage and family and medical leave. However, the ruling did not require states to recognize same-sex marriage or end state-level bans.  As such, while the federal government extended benefits to legally married same-sex couples based on “state of celebration”21 where possible,  some benefits remained dependent on the legal status of same sex marriage in “state of domicile.”22 This led to a patchwork of coverage availability across the country until the Obergefell
  •  Obergefell v. Hodges23: In June 2015, the Supreme Court ruled in Obergefell v. Hodges that the Fourteenth Amendment requires states to license same-sex marriages and to recognize such marriages lawfully licensed and performed out-of-state, resulting in legal recognition of same-sex marriage nationwide. This effectively ends the distinction between state of celebration and state of domicile and further expanded access to health coverage and care for LGBT individuals and families.

Specific changes that affect spousal coverage and benefits due to these rulings are as follows:

  • Tax Implications: As a result of the Windsor ruling, the Internal Revenue Service (IRS) ruled that it recognized all legally married same sex couples, based on state of celebration, who could now file federal taxes as “married” and, where same-sex marriage was legal, state taxes as well. As a result of the Obergefell decision, same-sex couples can now file state taxes jointly in every state. Tax filing affects a number of health-related financial issues such as taxes on health benefits.24  For example, dependent coverage, including spousal coverage, is excluded from an employee’s taxable income. Prior to the Supreme Court’s Windsor ruling, coverage for a same-sex spouse was considered taxable income, which raised taxes for those who received this coverage. The same is true for state taxes in states that did not recognize same-sex marriage prior to the Obergefell  These rulings mean that married same-sex couples no longer face this higher tax burden at the federal and state levels.25,26 
  •  Federal Employees & Federal Contractors: The Supreme Court’s Windsor decision also prompted federal agencies to reverse previous limitations on spousal benefits in federal programs. Where the federal government determined it had jurisdiction to do so, such benefits were extended to all legally married same-sex couples based on state of celebration. For example, all federal employees who are legally married to a same-sex partner (regardless of where they live), were given the same eligibility for dependent spousal health coverage in the Federal Employees Health Benefits Program (FEHBP) as well as other dependent benefits, including dental and vision insurance, long-term care insurance, and flexible spending accounts.27 In addition, in 2014, President Obama issued an executive order28 adding sexual orientation and gender identity to the prohibited bases of discrimination in employment by federal contractors and subcontractors. As such, it requires contractors that provide spousal benefits to opposite-sex married couples to also provide them to same-sex married couples.29
  •  Members of the Military and Veterans: Following the Windsor decision, the Department of Defense recognized same-sex marriages based on state of celebration and extended spousal benefits, such as TRICARE health coverage, to the same-sex spouses of military service members and employees.30  However, several benefits for Veterans continued to be tied to state of domicile, which meant that eligibility for spousal benefits for Veterans was uneven between marriage equality and non-equality states until the ruling in Obergefell.  As a result of that decision, the Department of Veterans Affairs now recognizes all same-sex marriages31 and will extend benefits to all same-sex spouses of Veterans, including CHAMPVA health coverage, survivor compensation, and burial benefits.
  •  State and Municipal Employees: While the Windsor decision resulted in eligibility for spousal coverage for all federal employees and contractor employees, a patchwork of policies remained for state and local public employees based on where they lived.  As a result of the Obergefell ruling’s recognition of same-sex marriages in all states, spousal coverage benefits should be extended to state and municipal employees across the nation to the same degree as their heterosexual counterparts.
  •  Private Employers: Neither the Windsor nor Obergefell decisions are binding on employers.  In addition, as mentioned above, ACA regulations regarding health issuers are also not binding on employers.  Therefore, while employers in marriage equality states were largely expected to offer same-sex spousal coverage after Windsor, and in all states after Obergefell, there remains some question about whether employers can legally limit spousal coverage to opposite-sex spouses.  Still, many experts believe that an employer that offers health benefits to opposite-sex spouses but refuses to offer such benefits to same-sex spouses would likely be in violation of Title VII of the Civil Rights Act, which prohibits discrimination based on sex.  The Equal Employment Opportunity Commission (EEOC)32 and at least one federal court33 have found Title VII to have standing in such cases.  Moreover, a recent EEOC decision found that “sexual orientation is inherently a ‘sex-based consideration” under Title VII.34  The EEOC ruling allows such cases from both private and public sector employees to be brought forward for its review and will also be considered by federal courts in their review of cases, although it is not binding on them.  In addition to potential Title VII violations, employers who provide spousal coverage for opposite sex couples but not same-sex couples may be subject to state non-discrimination laws.  Given the remaining uncertainties regarding employers, this will be an important area to watch going forward.
  •  ERISA Protections: The Department of Labor issued guidance35 on the implications of the Windsor ruling for health plans and plan sponsors governed by the Employee Retirement Income Security Act of 1974 (ERISA), the federal law that sets minimum standards for most voluntarily established pension and health plans. The guidance states that under ERISA, the definition of “marriage”, wherever it appears, will include same-sex marriage based on state of celebration. This makes clear that group health plans can extend certain protections to married same sex couples, most notably COBRA, the law that offers employees and their families a temporary extension of group health coverage following a job loss or other qualifying event.  In addition, because ERISA requires group health plans that offer spousal coverage generally to permit special enrollment opportunities for newly-married spouses, this guidance makes clear that group health plans can extend special enrollment rights to same-sex marriages where spouses are otherwise eligible to participate.  However, neither the guidance nor ERISA specifically addresses whether the employer that sponsors the group health plan is required to recognize a same-sex marriage.
  •  State-Level Insurance Protections: In addition to federal law, the number of states that have nondiscrimination policies in insurance coverage and employment has increased over time, although the majority of states do not have such protections. Twelve states (CA, CO, DE, HI, IL, ME, MN, NV, NY, OR, RI, VT, and WA) plus DC prohibit discrimination based on sexual orientation and gender identity in private health insurance.36 New Jersey provides protection on the basis of sexual orientation but not gender identity in private health insurance.37 Nineteen states (CA, CT, CO, DE, HI, IL, MA, MD, MI, MN, NJ, NV, NY, OR, PA, RI, VT, and WA) and DC prohibit transgender exclusions in health insurance through legislation or regulation.38 Twenty states (CA, CO, CT, DE, HI, IL, IA, ME, MD, MA, MN, NV, NJ, NM, NY, OR, RI, UT, VT, and WA) plus DC prohibit discrimination by private employers on the basis of sexual orientation and gender identity and another two states (NH and WI) prohibit discrimination based only on sexual orientation.39
  •  Health Insurance Marketplaces: Windsor also affected eligibility for assistance for same-sex couples in all ACA health insurance marketplaces (whether federally-facilitated or state based). Eligibility is based in part on an applicant’s family structure and income.  Federal regulations were issued stating that insurance marketplaces must recognize same-sex marriages and base eligibility for tax credits on a couple’s income according to their tax filing.40  (It is important to note that when a couple’s income is used to determine eligibility for tax credits in the marketplace, it could mean they are more or less likely to qualify, depending on their specific situation).
  •  Medicaid and CHIP: Because Medicaid and the Children’s Health Insurance Program (CHIP) are federal-state partnerships, the federal government determined that Windsor did not allow it to require states to recognize same-sex marriages for the purpose of determining eligibility, although it encouraged them to do so.41 This meant that eligibility could vary based on state laws regarding same-sex marriage.  With the Obergefell ruling, however, all states must now recognize legal same-sex marriages and state Medicaid agencies are expected to do so (as with marketplaces, eligibility may be impacted when income is counted jointly).
  •  Medicare: These decisions have also resulted in expanded access to Medicare for same-sex couples. After Windsor, DHHS issued guidance clarifying that same-sex married beneficiaries in Medicare Advantage plans who each need care in a skilled nursing facility can receive care at same facility, as applicable to married Medicare beneficiaries more generally.42 Also after Windsor, individuals in same-sex marriages became eligible for free Medicare Part A (hospital) premiums in marriage recognition states if their spouse had sufficient work history to qualify for Medicare benefits, even if they themselves did not.43 If they lived in a non-recognition state, however, they had access to reduced premiums only.  Obergefell expanded access to free Part A premiums nationwide.  In addition, a special enrollment period (SEP) for Medicare Part B (and Premium Part A) is available for an individual who gains and then loses insurance coverage related to spousal employment without facing a penalty (this was already based on state of celebration after Windsor).44 As with other means-tested programs, eligibility may be impacted when income is counted jointly.

Family Caregiving Issues

Caring for ill family members is another area of policy that has been evolving in recent years for LGBT people and their families. The Family Medical Leave Act (FMLA) provides workplace protections to employees if they take time off to care for a family member in the event of illness or birth of a child. Under DOMA, LGB individuals were not afforded the law’s protections to care for a spouse because the federal government did not recognize same-sex marriages; however, the Supreme Court’s decision extends the law to all legally married individuals at qualifying employers. While this is an important step, it does not cover all workers. Additionally there are still other barriers that can limit the reach of these new policies.

  • After the Supreme Court’s Windsor ruling, the DOL expanded FMLA to include legally married same-sex spouses residing in states that recognized same-sex marriage.45 In February 2015, the DOL expanded the FMLA to include same-sex couples based on state of celebration, regardless of their state of residence.46
  •  In addition to workplace protections, visiting loved ones in the hospital or another health care setting has not always been guaranteed for LGBT people. However, federal regulations in effect since 2011 require hospitals participating in Medicare and Medicaid (virtually all hospitals in the U.S.) to adopt written policies and procedures regarding a patient’s rights to visit his or her same-sex partner (whether or not they are legally married) and state explicitly that discrimination based on sexual orientation and gender identity are prohibited.47
  •  Providers must sometimes communicate information or discuss medical decisions on a patient’s behalf with a patient “representative,” who is often a spouse. If finalized, Federal regulations proposed in 2014 would require that providers and suppliers, such as hospitals, hospices, community mental health centers, and laboratories, that participate in Medicare and Medicaid must recognize same-sex spouses (marriage legalized based on state of celebration) as patient representatives.48
  •  Concerns have also been raised about discrimination against older LGBT individuals and their families in long-term care facilities. Recent federal regulations now provide residents of long-term care facilities, such as nursing homes, the right to have visitors of their choice, including same-sex spouses and domestic partners.49
  •  However, in October 2017 the Trump admiration withdrew a proposed rule that would have required long term care facilities receiving federal funds to treat same-sex spouses the same as opposite-sex spouses.50 An HHS spokesperson stated that the Administration did not believe the rule needed to be finalized in light of the 2015 Obergefell ruling (requiring licensing and recognition of same-sex marriage in all states).51 However, Obergefell only address the right to marry, not whether institutions can legally treat married same-sex couples differently than married opposite-sex couples.
  •  In addition, there are still areas where LGBT individuals and families are not protected. For example, paid sick leave is an important benefit that many workers do not have. Because it has been legal in more than half the states to fire employees based on their sexual orientation or gender identity, LGBT employees without paid leave may be more reluctant to take time off when they or their family members are sick.52

Other Changes

  • Medicaid is the primary payer of long-term care, and qualifying for Medicaid long-term services can result in exhaustion of financial resources for those who seek services as well as their spouses. The program’s “spousal impoverishment” protections aim to mitigate this by allowing a spouse who remains in the community to retain a certain level of income and assets without affecting eligibility.  In 2011, states were given the option to extend these “spousal impoverishment” protections to married same-sex couples and domestic partners.53  After Windsor, such protections were required for married same-sex couples in marriage equality states. It is expected that with the Obergefell ruling, all states will be required to apply these protections to married same-sex couples.
  •  Coverage of transgender services has also been expanded in federal programs. In 2014, HHS invalidated a prior policy that had allowed Medicare plans to deny coverage for “transsexual surgery,” 54 and OPM has stated that, as of 2016, the Federal Employees Health Benefits Program (FEHBP) may not issue blanket exclusions for gender transition services.55   As a result, Medicare and FEHBP plans must cover gender transition services that are “medically necessary,” although the definition of medical necessity is in part at the discretion of providers and plans. Several employers have also moved to make their plan offerings more comprehensive by removing exclusions for transgender health services. Among major U.S. employers, there has been a five-fold increase in the number of businesses offering at least one health plan that includes coverage of transgender services such as counseling, hormone therapy, and surgical procedures.56

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A number of health challenges disproportionately affect LGBT communities, particularly the HIV epidemic, stigma and violence, substance use, negative experiences in the health care system, and lack of insurance coverage. In addition to health outcomes, access to care has been a concern and intersects with many broader issues, including relationship recognition, legal identity recognition policies for transgender individuals, training and cultural competency of health professionals, as well as overarching societal and cultural issues, particularly a long history of stigma and discrimination. While many of these barriers persist recent policy and legal changes have served to mitigate some of these challenges, particularly the implementation of the ACA and the impacts of marriage equality. While this convergence of policy and legal breakthroughs holds promise for broader access to health services, coverage, and benefits for LGBT communities, actions taken by the Trump administration may threaten to destabilize some of the insurance market and individual protections gained over the past decade, and it will important to monitor these changes moving forward.

Health Challenges Tables