The State of Transgender Health Care: Policy, Law, and Medical Frameworks

Abstract

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I review the current status of transgender peoples access to health care in the United States and analyze federal policies regarding health care services for transgender people and the limitations thereof. I suggest a preliminary outline to enhance health care services and recommend the formulation of explicit federal policies regarding the provision of health care services to transgender people in accordance with recently issued medical care guidelines, allocation of research funding, education of health care workers, and implementation of existing nondiscrimination policies. Current policies denying medical coverage for sex reassignment surgery contradict standards of medical care and must be amended.

The term transgender is an adjective that has been widely adopted to describe people whose gender identity, gender expression, or behavior does not conform to what is socioculturally accepted as, and typically associated with, the legal and medical sex to which they were assigned at birth.1 Gender nonconformity, or a desire to express gender in ways that differ from gender-cultural norms linked to sex assigned at birth, was until very recently considered a mental pathology by the psychiatric community.2 Although recognition and classification of gender nonconformity appeared in Western medicine in the 1920s, gender identity disorder (GID) first appeared as a distinct diagnosis in the American Psychiatric Associations (APAs) third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 19802 and remained a category until the newest edition of the DSM (the DSM-5).3 Over the past few decades, after professional as well as public debates, the APA has moved toward differentiating gender nonconformity from mental illness. On December 1, 2012, the board of the APA approved changing the diagnosis of GID to that of gender dysphoria in the DSM-5, HYPERLINK "https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3953767/" \l "bib3" 3 a significant move toward depathologizing gender variance. Psychiatrists increasingly agree that being transgender is not an illness to be cured or overcome (nor, for that matter, a state that can be altered). However, those who suffer because of the misalignment of their physical characteristics with their gender identity may benefit from treatment.4Current estimates have suggested that 0.3% of US adults, or close to 1 million people, identify as transgender.5 (Other estimates have varied widely from a high prevalence of 1:500 or more6 to 1:11 9001:45 000 for male-to-female individuals and 1:30 4001:200 000 for female-to-male individuals.710) Demographic studies to date have been limited7 because national surveys have not included questions recognizing gender identity. Furthermore, important methodological debates remain unresolved, including those about conflation of terms (e.g., differentiation among gender, gender identity, and sex) and appropriate ways to accurately describe the transgender population (e.g., according to self-identification, gender expression, gender identity, or wish for medical treatment).8 One way of estimating the proportion of transgender people in the population is through data on medical care, specifically medical assistance in the process of adapting gender presentation to align with identity, a process known as transitioning. However, this approach does not identify transgender people who have not opted for or who have faced insurmountable obstacles in accessing such care. Even using the conservative estimate of 0.3%, the number of people living in the United States who identify as transgender is nearly 1 million. Health care for this population has historically been, and continues to be, overlooked by governmental, health care, and academic establishments.

Transgender people have a unique set of mental and physical health needs. These needs are compounded by prejudices against transgender people within both the medical system and society at large. These prejudices create barriers to accessing timely, culturally competent, medically appropriate, and respectful care.9,11,12 These societal and medical barriers are associated with increased risk of violence, suicide, and sexually transmitted infections.11 Additionally, transgender people may have health needs related to gender transition, including hormonal therapy and surgery, that can create an undesired and unavoidable dependency on the medical system for basic identity expression. This combination of high medical needs and barriers to accessing appropriate care may give rise to a self-perpetuating cycle of risk exposure, stigmatization, prejudice, and eventually poor health outcomes.

Transition-related medical care, otherwise referred to as gender-confirming therapy, is designed to assist an individual with the adjustment of primary and secondary sexual characteristics to align with gender identity.9,13 Such therapy may include hormonal therapy, surgical therapy, or both depending on individual needs and wishes, as well as ability to access such services. Procedures for gender confirmation may include breast or chest surgery, hysterectomy, genital reconstruction, facial hair removal, and plastic reconstruction, as appropriate to the particular person.14Denial of, or severely limited access to, medical care for transgender people, whether explicitly by refusal of coverage or implicitly by prejudice and lack of knowledge among health care workers, may have detrimental effects on both short- and longer term health and well-being of transgender people. Moreover, the failure to comprehensively address the medical needs of transgender people stands in contradiction to the medical professions prized values of equity and respect.15 As such, I argue that a new approach is urgently needed: one that not only recognizes the unique health care needs of this group of people, but does so in an ethical, principled, and timely manner.

Over the past few decades, a growing body of research has been published regarding lesbian, gay, bisexual, and transgender (LGBT) health.16,17 However, most of the literature and published data have involved sexual minorities (i.e., lesbians, gays, and bisexuals) or the LGBT community as a whole, leaving unaddressed specific needs, issues, and barriers faced by transgender and gender-nonconforming people. Although a growing body of literature has addressed the overall health and health indicators of transgender people, HYPERLINK "https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3953767/" \l "bib12" 12,18,19 the evidence-based work on gender-confirming treatment (medical and surgical transition care) is still limited. For example, few high-quality systematic studies have been conducted20; of those conducted, many are observational in nature.4,11,21 (Because of the relative availability of funding for HIV/AIDS-related research and high HIV prevalence among transgender people,11 much of the research to date regarding transgender health policy has focused on HIV/AIDS; see also Brennan et al.21) Further compounding the lack of rigorous research and data, the limited body of published work includes examples of research that may be construed as objectifying and may lead to misunderstanding or prejudice by readers (including authors use of assigned rather than chosen gender pronouns22), which brings with it the risk of perpetuating or deepening misconceptions and unconscious prejudices among health care professionals.

In the past few years, several key public health bodies have recognized the lack of robust data on health indicators and on what constitutes medically appropriate care and the negative effect it has had on the quality of care provided to sexual and gender minorities; attempts to address these knowledge gaps have resulted in recent reports on LGBT health, for example, by the Institute of Medicine17 and Healthy People 2020.23In a recently published response to the Institute of Medicine report on LGBT health, the National Institute of Healths LGBT Research Coordinating Committee found that most LGBT health research

is focused in the areas of Behavioral and Social Sciences, HIV (human immunodeficiency virus)/AIDS, Mental Health, and Substance Abuse. Relatively little research has been done in several key health areas for LGBT populations including the impact of smoking on health, depression, suicide, cancer, aging, obesity, and alcoholism.24(p8)

In this same report, the LGBT Research Coordinating Committee called for increased research on transgender-specific health needs, including those associated with transitioning and the safety and efficacy of surgical sex reassignment procedures, as well as mental health and routine clinical care.

On June 29, 2011, US Department of Health and Human Services Secretary Kathleen Sibelius announced that the department would begin collecting data in its population health surveys that would facilitate identification of health issues and reduction of health disparities among LGBT populations.25 These data will be collected by integrating questions regarding sexual orientation and gender identity into the National Health Interview Survey and, as an initial step toward the creation of a governmental standard for LGBT health data collection, under Section 4302 (nondiscrimination) of the Patient Protection and Affordable Care Act (ACA).26 Starting in January 2013, the National Health Interview Survey has included a sexual-orientation specific question. HHS is currently testing survey questions on gender identity with the express purpose of capturing data about transgender people.27Go to:MEDICAL NEEDS

Transgender people, particularly low-income transgender people and transgender people of color, have reported even higher rates of discrimination in accessing competent and comprehensive care than other sexual minorities.28 In 2008, the National Center for Transgender Equality and the National Gay and Lesbian Task Force partnered to conduct the first large-scale, national survey of transgender people, funded by the Network for LGBT Health Equity (formerly the Network for LGBT Tobacco Control). The studys overarching objective was to map out the needs of and the issues faced by transgender people.11 The 70-question survey was developed by an interdisciplinary team of social and health science researchers, grassroots and national transgender rights advocates, expert lawyers, statisticians, and LGBT movement leaders. The survey was completed online or in paper form and returned by more than 7500 respondents recruited through community organizations and community e-mail distribution lists, with direct outreach through organizations serving hard-to-reach populations, such as rural, homeless, and low-income transgender and gender-nonconforming people. The responses of 6456 people were included in the analysis, with a geographical distribution representative of the US population.

The landmark survey confirmed and expanded existing knowledge regarding areas of increased risk and specific difficulties that transgender people face in navigating the health care system.11 It found that 19% of respondents reported having been denied health care by a...