HEALTH AND HEALTH CARE LAW AND POLICY

Health and health care laws and policies affecting U.S. LGBT people exist at multiple levels—local, state, federal, and international—and influence both public and private sectors. The health care system in the United States contains a mixture of private and public elements. Most Americans obtain health insurance through their private employers and most obtain health care through private providers. The state, however, regulates the private health care system, funds health care for particular groups (public sector employees, the elderly, the poor, members of the military, veterans, etc.), owns facilities such as public and veterans' hospitals, sponsors health-related research and development, coordinates health education programs, and maintains a variety of public health programs (including programs dealing with sexually-transmitted diseases). Health laws and policies guide agencies and associations in the organization and financing of services and resources relevant to the general population and to particular groups. While this is the allocative function of health laws and policies, the dogmatic function can be used to control and eradicate not only defined behavior but also the existence of specific groups.

Before 1967

Beginning in the late nineteenth century, homosexuality and transgenderism were conceptualized as illnesses (and specifically as mental illnesses) in the United States. This view, in combination with views of homosexuality and transgenderism as sinful and criminal, was the basis for a variety of health and health care laws and policies that damaged and discriminated against LGBT people. U.S. health law and policy was heterosexist and gender-normative in multiple ways. Rights, privileges, and benefits such as hospital visitation rights, rights to make medical decisions for incapacitated partners, health insurance benefits, and reproductive services, for example, were commonly granted to heterosexually married couples and denied to same-sex couples. Various laws, including statutes providing for the institutionalization of the mentally ill, indeterminate sentencing for sexual psychopaths, and the exclusion and deportation of immigrants with psychopathic personalities, used health-related justifications for discriminating against LGBT people. Moreover, many laws and policies permitted (and sometimes even required) the health care system to engage in violent, cruel, and sadistic practices (including castration, electroshock aversion therapy, and denial of sex-reassignment surgery) against LGBT people. Though countless LGBT Americans received adequate health care, they had good reason to fear and distrust health-related laws and policies in the United States.

Continuity and Change

In September 1967, the Director of the National Institute of Mental Health (NIMH), Dr. Stanley Yolles, appointed a Task Force on Homosexuality. The task force's final report, released in 1969, consisted of recommendations from the NIMH as well as seven background papers by "experts," including Evelyn Hooker, John Money, Judd Marmor, and Jerome Frank. Despite the content of the papers and their recommendations for the establishment of a Center for the Study of Sexual Behavior, much of the language in the report was quite contemptuous. For example, the report authors endorsed the goal of preventing homosexuality from developing within children and adolescents. As to treatment, the task force report condoned imprisonment and called for rehabilitative measures.

In 1969 the Stonewall Riots in New York City marked the beginning of a new wave of LGBT activism, which had major effects on conceptions of homosexuality and transgenderism as illnesses. In 1970 in San Francisco, LGBT activists protested and disrupted the meeting of the American Psychiatric Association (APA), contesting the labeling of homosexuality as a mental disorder in the Diagnostic and Statistical Manual (DSM) used by psychiatrists. At the next APA annual meeting in 1971 in Washington, D.C., a panel of gay men and lesbians was organized, but protests continued. At the 1972 APA convention in Dallas, Texas, organizers offered another panel addressing LGB issues. This panel included psychiatrist John Fryer, who wore a disguise for fear of losing his medical license. In 1973, the APA officially removed homosexuality from the DSM after researchers failed to demonstrate a link between same-sex behaviors and mental illness.

In the same year that homosexuality was removed from the DSM, however, a new diagnosis, gender dysphoria disorder, was constructed and officially added. This term was dropped from the DSM in 1987 because in the U.S. almost all homosexuals first go through a phase in which homosexuality is distonic. The APA decision had major ramifications on LGBT health law and policy in the United States, although many statutes (e.g., immigration statutes) continued to rely on now-discredited links between homosexuality and mental illness, and LGBT people continued to be excluded from health-related policies restricted to married partners.

In the 1960s, 1970s, and 1980s, various national groups emerged that assisted in developing health policies and influencing legislation affecting LGBT people. These included the Sexuality Information and Education Council of the United States (1964); the Lesbian, Gay, Bisexual, and Transgender Caucus of Public Health Workers (1975); the National Association of Lesbian and Gay Addiction Professionals (1979); and the American Association of Physicians for Human Rights (1981), which changed its name to the Gay and Lesbian Medical Association in 1994. Various political and legal reform organizations, including the Human Rights Campaign Fund, Lambda Legal Defense, and the National Gay and Lesbian Task Force also lobbied policymakers on health issues affecting LGBT populations.

In 1979, the federal government began the Healthy People initiative, focusing on specific diseases and disorders that federal officials believed needed to be addressed and encouraging state and local communities to develop similar plans. The document is amended each decade. Not until Healthy People 2010 did the U.S. Department of Health and Human Services officially identify LGB people as a subpopulation in the United States that experiences significant health disparities.

Marriage, Domestic Partnership, and Living Wills

Marriage, the legal union of two individuals, is a basic institution in American society. Although the state of Vermont has enacted a "civil unions" law for same-sex couples, no state currently permits same-sex marriage. Marriage not only symbolizes a couple's relationship, but also provides legal advantages—including health insurance coverage, hospital visitation rights, and medical decision-making powers—for partners. Without a legal mechanism to establish same-sex primary relationships, the ability to obtain health insurance for a partner can be restricted; the rights of a partner to visit an ill or dying spouse in the hospital can be denied; the right to make decisions for a medically incapacitated partner can fall on deaf ears; the power to determine long-term care needs for and maintain access to ill partners can be usurped by blood relatives; and the right to receive bereavement and caregiving leave can be restricted.

To address these and other problems, the term domestic partner was coined in San Francisco in the early 1980s. In various contexts, this designation gives LGBT partners legal standing comparable to marital partners. Over the last three decades, numerous private and public employers have adopted domestic partner benefits schemes, offering LGBT people some of the benefits of marriage. Domestic partners can receive various types of health-related benefits, including dependent life and disability insurance, pension benefits, adoption assistance and day-care, long-term care, bereavement and sick leave, and relocation expenses.

Another mechanism to deal with health-related discrimination is living wills. Living wills or advance directives provide written instructions for health care providers about individuals' preferences in the event that they are terminally ill or unable to respond for themselves. Since the law does not recognize same-sex couples, living wills are critical. In the absence of living wills, courts usually look to the closest biological family member to assist in making life-sustaining and other medical decisions. Such decisions have sometimes circumvented prior verbal communications among same-sex couples. Many legal advocates suggest that even with living wills LGBT individuals should notify in writing all health care providers of their medical directives and request that these instructions become part of all medical records. This additional step assists health care providers in becoming ombudspersons if biological family members attempt to negate living wills. In addition to arranging for living wills, many LGBT people now arrange for a durable power of attorney for health care or a surrogate medical decision-maker. This individual, whether a domestic partner, friend, or a biological family member, makes medical decisions on the patient's behalf when the individual is incapacitated. The durable power of attorney for health care, however, does not grant authority to withhold or withdraw treatment without a living will.

LGBT people have thus found various ways to promote equality in health care rights.

AIDS

Laws and policies related to the AIDS epidemic have affected LGBT people in significant ways in the last two decades. During the 1980s, for example, the U.S. Congress and the Reagan administration passed appropriation riders to AIDS funding bills that forbade funding for AIDS education programs that promoted or encouraged homosexuality. In 2003, the Bush administration is still promoting regulations that limit the ability for AIDS service organizations to promote health in general and LGBT health in particular. For example, information on sexual health was removed from government Web sites in an effort to promote abstinence as recently as 2003. The administration requires organizations to develop community review committees to review and tone down AIDS information that may be objectionable to conservative community leaders.

Congressional and administration conservatives have implemented internal policies to reject research and grant proposals based on key words related to sexual and gender minorities. Despite the sanctioned Healthy People 2010 Companion Document on LGBT Health that clearly documents the need for research and data collection related to LGBT health outcomes, little is being done by government agencies. There is a fear among conservatives that the outcomes of research will ultimately drive policy and create equality for LGBT people.

Government laws and policies have also permitted and sometimes sanctioned AIDS-based discrimination against LGBT people. Because of the AIDS epidemic's disproportionate impact on gay men, for example, some insurance underwriters categorize gay men as high-risk, thereby justifying increased insurance rates or rejection of coverage for men known to be gay, men working for LGBT organizations, unmarried men who live in particular geographic areas, and men who work in stereotypically gay professions. Current laws permit insurance carriers to require testing for HIV prior to issuing coverage. Profiling gay men as high-risk candidates for AIDS not only promotes prejudices and discrimination within this already marginalized community, but also ignores the changing demography of the epidemic.

AIDS-based discrimination continues to be a problem in the United States. With the passage of the Americans with Disabilities Act in 1990, many thought AIDS discrimination would end. However, conservative decisions by lower courts have lessened the applicability of the legislation to people living with AIDS. Lower court decisions still permit employment discrimination for people living with HIV and AIDS. In 1998, the Supreme Court ruled in a somewhat more inclusive manner by allowing employers to limit hiring individuals based on medical conditions. As of 2003, there were court cases being heard or that were pending related to providing HIV care and testing in prisons, discriminating in disability insurance, exposing others to HIV infection, evicting homeless men with HIV from shelters, disallowing men with HIV from becoming police officers, and limiting adoption to non-HIV individuals.

The Future

In response to the health concerns of LGBT populations, the Health and Resources Services Administration of the federal government provided federal funding in 2000 to the Gay and Lesbian Medical Association and Columbia University's Center for LGBT Health to coauthor a white paper titled Lesbian, Gay, Bisexual, and Transgender Health: Findings and Concerns. This paper and Healthy People 2010 formed the foundation for the Healthy People 2010 Companion Document for LGBT Health , a momentous federally funded, community-written document that discusses issues, concerns, and recommendations for policy and research for LGBT populations. One critical byproduct of this effort was the formation of the National Coalition for LGBT Health, which advocates in the areas of health-care research, policy, and law.

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Rodger L. Beatty,

Michael D. Shankle,

Nancy J. Kennedy

see alsoaids and people with aids; anti-discrimination law and policy; discrimination; employment law and policy; family law and policy; federal law and policy; health, health care, and health clinics; immigration, asylum, and deportation law and policy; sexually-transmitted diseases; transgender and gender impersonation law and policy.