Research indicates that access to adequate insurance coverage, culturally responsive providers, and high-quality, evidence-based health care services has the potential to significantly reduce the effects of health disparities on sexual and gender diverse (SGD) populations. This chapter first reviews the literature on access to care, insurance coverage, and health services utilization in SGD populations. It then discusses in detail three topics that are particularly critical to ensure that clinical and policy approaches to health care for SGD populations are evidence based: gender-affirming care for transgender people, conversion therapy targeting sexual orientation or gender identity, and early genital surgeries for infants with intersex traits.
The importance of grounding clinical protocols and health-related policies on a firm evidence base is a central component of providing high-quality care to SGD people and developing effective strategies to improve SGD population health. Evidence indicates that gender-affirming medical care can significantly improve the health and well-being of transgender people. Conversely, virtually all major medical authorities agree that both “conversion therapy” to change the sexual orientation or gender identity of LGBTQ people and procedures to “normalize” the sex characteristics of children with intersex traits who are too young to participate in consent lack evidence of benefit and show evidence of physical and mental health harms.
Over the past decade, the evidence regarding the importance of gender-affirming care for transgender people has grown exponentially, with increasingly robust data on improvements in mental health outcomes and overall
well-being in particular. With regard to conversion therapy and early genital surgeries on infants with intersex traits, however, the evidence base has evolved in the opposite direction, indicating that these procedures have harmful consequences for the health of SGD people.
SGD people often encounter barriers to health care services. These barriers include individual factors, such as health literacy; interpersonal factors, such as individual experiences of discrimination by health care providers and insurers; and broader structural factors, such as lower rates of health insurance coverage and higher rates of poverty among lesbian, gay, bisexual, and transgender (LGBT) communities and households headed by same-sex couples, which puts health care financially out of reach for many. Another common barrier is a widespread lack of training for providers in SGD population health, which means that many individuals, particularly transgender and people with intersex traits, struggle to find culturally and clinically competent health care providers.
This section discusses insurance coverage, access to care, and utilization of health care services by SGD people. It focuses first on discrimination in access to health care and health insurance, which is an important influence on the well-being of SGD populations. It then discusses other insurance coverage issues for SGD people, followed by what is known about health services utilization in SGD populations, including considerations of care quality and health professions training.
Discrimination in Health Care and Health Insurance Coverage
Despite cultural and legal shifts such as the nationwide expansion of marriage equality for same-sex couples, discrimination against LGBT people in health care and coverage remains pervasive in the United States. A 2017 survey conducted by National Public Radio (NPR), the Harvard School of Public Health, and the Robert Wood Johnson Foundation found that 16 percent of LGBT people reported encountering discrimination on the basis of their sexual orientation or gender identity when seeking medical care (NPR, Robert Wood Johnson Foundation, and Harvard T.H. Chan School of Public Health, 2017). Transgender people are particularly likely to encounter discrimination in health care settings. According to the 2015 U.S. Transgender Survey (USTS), 33 percent of transgender people who had seen a health care provider in the previous year had at least one negative experience related to being transgender, such as being verbally harassed, physically assaulted, or refused treatment (James et al., 2016). A 2019 review found that, across eight studies, 27 percent (range: 19–40%)
of transgender people reported having been denied health care outright (Kcomt, 2019).
In health insurance, discrimination against SGD people has historically taken many forms. Some types of insurance discrimination prevent people from being able to obtain or afford a health insurance plan at all. These include denials of family coverage to same-sex couples, including legally married spouses (CCIIO, 2014), and preexisting condition exclusions targeting conditions such as cancer and HIV (CCIIO, n.d.). Those who do obtain a plan may then encounter barriers to using their coverage. For SGD people living with HIV, these barriers include adverse tiering (when insurers place certain drugs, such as HIV antiretrovirals, in high cost-sharing levels) and coverage exclusions for pre- and post-exposure prophylaxis (Jacobs and Sommers, 2015; Underhill, 2012). For other SGD people, frequent coverage barriers include difficulty accessing preventive screenings (Agénor et al., 2014; CMS, 2015; Tabaac et al., 2018) and exclusion of coverage for such services as mental and behavioral health care, infertility treatments for same-sex couples, and gender-affirming care for transgender people (American Society for Reproductive Medicine, 2013; Baker, 2017; Coursolle, 2019). Among USTS respondents with insurance, 25 percent reported insurance discrimination on the basis of their gender identity (James et al., 2016). Their experiences included being denied coverage for what are often construed as “gender-specific” services, such as mammograms, cervical cancer screenings, and prostate exams (13%); being denied coverage for care not related to gender affirmation (7%); and being denied coverage for gender-affirming surgery (55%) or hormone therapy (25%). Gender-affirming medical care for transgender people is discussed in detail below.
As described in Chapter 11, discrimination has direct negative consequences for health and well-being and exacerbates the significant health disparities that affect LGBT, intersex, and other SGD populations. Encounters with discrimination in health care settings also jeopardize health by engendering avoidance. In the NPR et al. study, 18 percent of LGBT people reported not seeking health care when they needed it for fear of discrimination; in the 2015 USTS, 23 percent of transgender respondents had not sought care they needed in the last year for fear of mistreatment (James et al., 2016; NPR, Robert Wood Johnson Foundation, and Harvard T.H. Chan School of Public Health, 2017). Similarly, people with intersex traits may avoid routine health care due to previous negative experiences with medical providers (Lambda Legal, 2018).
Given the health consequences of discrimination, laws and policies that prohibit discrimination are a critical intervention for protecting and improving the health and well-being of LGBT, intersex, and other SGD people. Both public and private entities have increasingly established
nondiscrimination protections that include these populations. Beginning in 2006, the U.S. Department of Health and Human Services (HHS) promulgated a number of regulations that sought to ensure that discrimination on the basis of sexual orientation or gender identity did not hinder beneficiaries’ access to a wide range of programs, including Medicare’s Program of All-Inclusive Care for the Elderly,1 HHS grants and services,2 HealthCare. gov and the state-based health insurance marketplaces,3 Medicaid managed care plans,4 plans covering the essential health benefits outlined in the Affordable Care Act (ACA),5 qualified health plans,6 and ACA-regulated health insurance plans more broadly.7 In 2011, the Joint Commission, which accredits approximately 80 percent of U.S. hospitals, began requiring accredited entities to establish nondiscrimination policies inclusive of sexual orientation and gender identity (Joint Commission, 2011).
In 2016, HHS released a regulation outlining its enforcement of Section 1557 of the ACA.8 This ACA provision, sometimes known as the Health Care Rights Law, prohibits discrimination on the basis of race, color, national origin, age, disability (including HIV status), or sex in any federally supported health program or activity.9 The 2016 regulation clarified that the sex nondiscrimination protections in Section 1557 include gender identity and intersex status (as well as pregnancy status) (Baker, 2016). The department also invited complaints of sexual orientation discrimination as a form of sex stereotyping prohibited under Section 1557. In addition to requiring equal access to health care services and health insurance coverage, the regulation clarified that such actions as refusing to use a transgender person’s correct name and pronoun, assigning a transgender person to a hospital room or other facility on the basis of their sex assigned at birth, or excluding coverage for all care related to gender affirmation constitute discrimination (insurance coverage for gender-affirming care is covered in more detail below). Evidence indicates that this regulation was effective in addressing numerous forms of discrimination against LGBT people in health care settings (Gruberg and Bewkes, 2018).
As this report goes to press, the Section 1557 regulation is being contested through lawsuits in federal court regarding the scope of its protec-
1 42 C.F.R. § 460.98(b)(3) and § 460.112(a).
2 45 C.F.R. § 75.300.
3 45 C.F.R. § 155.120(c)(ii) and § 155.220(j)(2).
4 42 C.F.R. § 438.3(d)(4), § 438.206(c)(2), and § 440.262.
5 45 C.F.R. § 156.125(a) and (b).
6 45 C.F.R. § 156.200(e) and § 156.1230(b)(3).
7 45 C.F.R. § 147.104(e).
8 45 C.F.R. Part 92.
9 42 U.S.C. 18116.
tions for sex nondiscrimination. It is expected, however, that the Supreme Court’s decision in the case of Bostock v. Clayton County, in which the Court ruled that the sex nondiscrimination protections in Title VII of the Civil Rights Act include gender identity and sexual orientation (see Chapter 5), will supersede contradicting interpretations of the ACA’s sex nondiscrimination provision and lead to SGD populations being protected under Section 1557 (Keith, 2020). Still unresolved, however, are such issues as access to abortion and other health care services that are increasingly targeted by laws allowing health care providers to opt out of nondiscrimination requirements that they claim conflict with their religious beliefs (Keith, 2019). The impact of religious refusal laws on the health and well-being of SGD populations is a critical and understudied issue.
Health Insurance Coverage
Several factors have changed the landscape of health insurance coverage for LGBT people over the past decade. In addition to the nondiscrimination protections described above, these factors include marriage equality for same-sex couples and the implementation of coverage expansions under the ACA.
Legal relationship recognition expands the availability of health insurance coverage for same-sex couples. Prior to the 2015 Supreme Court decision legalizing marriage equality nationwide, state recognition of same-sex domestic partnerships, civil unions, or marriage was associated with narrower coverage gaps for same-sex couples and their children relative to families headed by different-sex couples (Gonzales, 2015; Gonzales and Blewett, 2013, 2014). The effects of the Supreme Court decision itself are difficult to discern given their overlap with the major expansion of coverage driven by the ACA. The ACA, which was enacted in 2010 and went into full effect in 2014, expanded the availability of coverage in two main ways. First, the law created sliding-scale tax credits intended to facilitate the purchase of health insurance coverage through new health insurance marketplaces, such as HealthCare.gov. Second, under the Supreme Court’s 2012 interpretation of the ACA, states were given the choice to expand the eligible income ranges for their Medicaid programs.
Both of these mechanisms are important pathways to coverage for LGBT people, who tend to have lower incomes and higher rates of uninsurance than non-LGBT people. In the first half of 2013, prior to the full implementation of the ACA, 34 percent of a nationally representative sample of LGBT people making less than $45,000 per year (the income range eligible for health insurance marketplace subsidies) were uninsured (Baker, Durso, and Cray, 2014). Following the opening of the marketplaces in fall 2013, uninsurance among LGBT people in this income bracket dropped to
26 percent in 2014 and to 22 percent in 2017 (Baker and Durso, 2017). Data from the Urban Institute’s Health Reform Monitoring Survey similarly indicate that the share of LGB adults without health insurance across all income ranges decreased from 21.7 percent in 2013 to 11.1 percent in 2015 (Karpman, Skopec, and Long, 2015). In 2015, uninsurance among transgender USTS respondents stood at 14 percent (James et al., 2016). A 2017 study based on Gallup data, however, found that the adult LGBT population as a whole remained more likely to be uninsured than the non-LGBT population—15 percent and 12 percent, respectively—though this analysis did not account for a greater proportion of young people in the LGBT group.10
One risk factor for uninsurance among LGB adults in the post-ACA era is being just older than 26, when coverage for young people through their parents’ plans often ends (Gonzales, Driscoll, and Quinones, 2019). Living in the South or Midwest is also a risk factor for uninsurance. These regions comprise the bulk of the states that have not expanded their Medicaid programs and are home to substantial numbers of LGBT people living in poverty. Williams Institute estimates that 24 and 23 percent of LGBT people living in the South and the Midwest, respectively, have incomes below the federal poverty level (Choi, Badgett, and Wilson, 2019). An analysis of data from the 2014 Behavioral Risk Factor Surveillance System (BRFSS) indicated that a lack of Medicaid expansion is associated with higher prevalence of uninsurance among lower-income LGB adults: LGB adults with annual household incomes under $25,000 in states that did not expand Medicaid in 2014 had higher rates of uninsurance than LGB adults in states that did expand Medicaid—37.5 and 23.3 percent, respectively—though this analysis could not confirm that all of the uninsured would have been eligible for expanded Medicaid (Gonzales and Henning-Smith, 2017a).
Beyond providing coverage to low-income people, Medicaid is also particularly important for LGBT people with specific health care needs, such as people with disabilities and people living with HIV. Both population-based and purposive sampling studies indicate that the prevalence of disability is higher among LGBT people than in the general population. An analysis of Washington state BRFSS data, for instance, found that 35.5 percent of lesbians and 36.2 percent of bisexual women had a disability, compared with 25.9 percent of heterosexual women; 26.2 percent of gay men and 40.1 percent of bisexual men had a disability, compared with 22.5 percent of heterosexual men (Fredriksen-Goldsen, Kim, and Barkan, 2012). Among transgender people, 39 percent of 2015 USTS respondents reported having a disability, compared with 15 percent of the general population (James et
al., 2016). In comparison with binary-identified transgender people, nonbinary transgender adults in a pooled BRFSS sample from 30 states and Guam between 2014 and 2016 were more likely to report activity limitations due to physical, mental, or emotional problems (adjusted odds ratio [aOR]: 2.44; 95% confidence interval [CI]: 1.36, 4.34) (Streed, McCarthy, and Haas, 2018).
Though precise statistics are not available, disability for some LGBT people is related to living with HIV. To qualify for Medicaid coverage under pre-ACA eligibility rules, people living with HIV had to have both low incomes and a disability (or otherwise be categorically eligible by, for example, being a parent) (Kaiser Family Foundation, 2019). This led to situations in which people living with HIV could not afford treatment and had to allow their health to deteriorate to a disabling AIDS diagnosis before being able to access Medicaid coverage that could have kept them healthy (IOM, 2011a). The ACA resolved this problem in states that expanded their Medicaid programs. Access to care for people living with HIV is one of the many reasons that Medicaid expansion or broader health system reform, such as “Medicare for All” or another form of universal coverage, is a critical health issue for SGD populations.
Medicaid is also an important source of health insurance coverage for transgender people for both income and medical reasons. In the 2015 USTS, 29 percent of transgender respondents were living below 124 percent of the federal poverty line, which is nearly twice the rate of poverty among the general population (14%). Rates of poverty were higher among transgender respondents who were living with HIV (51%), had a disability (45%), or belonged to communities of color (43, 41, 40, and 38% among Latinx, Native American, multiracial, and Black respondents, respectively). The proportion of USTS respondents insured by Medicaid, however, was slightly smaller (13%) than the general population (15%). Barriers to Medicaid coverage for transgender people include restrictive income eligibility requirements in states that have not expanded Medicaid and the checkered history of Medicaid coverage for gender-affirming services, which is discussed in more detail in a later section of this chapter.
Health Services Utilization
Factors that can encourage or discourage care seeking include insurance coverage and benefit design; income and education; health status, including chronic conditions and acute care needs; health literacy; clinical and cultural competency among medical providers; geographic availability and physical accessibility of providers; and previous positive or negative experiences in health care settings (Committee on Health Care Utilization and Adults with Disabilities, 2018). Given the complexity of this constel-
lation of factors, it is difficult to characterize or predict broad trends in care utilization among SGD populations. For instance, the establishment of new legal protections may improve SGD population health and thus lead to fewer care visits; at the same time, however, the existence of new protections may encourage SGD people to seek care instead of avoiding it for fear of discrimination, which might lead to more care visits.
Some evidence suggests that sexual minority populations have high baseline care utilization. An analysis of data from the 2003–2011 nationwide Medical Expenditure Panel Survey, adjusted for sociodemographic factors, health risk behaviors, and health conditions, found that both men and women in same-sex partnerships had 67 percent (aOR: 1.67; 95% CI: 1.04, 2.67) increased odds of past-year emergency department visits and 51 percent (aOR: 1.51; 95% CI: 1.11, 2.07) increased odds of more than three physician visits in the previous year in comparison with people in different-sex partnerships (Blosnich et al., 2016). This finding is in keeping with the minority stress model, which suggests that sexual and gender minorities have worse health related to their lower social status and thus may require more medical care than their heterosexual and cisgender peers. Also in keeping with this model, Hatzenbuehler and colleagues (2012) observed a decline in medical care visits and mental health care visits among both partnered and single sexual minority men in the 12 months following the establishment of marriage equality for same-sex couples in Massachusetts.
Among transgender people, an analysis of data from the California Health Interview Survey found that transgender respondents had lower utilization rates of both primary and specialty care than non-transgender respondents (Ehrenfeld, Zimmerman, and Gonzales, 2018). Similarly, a study of transgender Medicare beneficiaries found a decreasing trend in mental health care use between 2009 and 2014 (Progovac et al., 2019). Use of gender-affirming health care services, however, has been rising since 2000 (Canner et al., 2018). This trend is likely related to a combination of a growing transgender population in the United States, improved coding practices that make it easier to identify transgender people and gender-affirming medical services in data sources such as insurance claims, and removal of barriers to insurance coverage for these services.
Further complicating assessments of care utilization is evidence that barriers to care can persist even after coverage becomes more available. Using data from the 2013–2015 National Health Interview Survey, for instance, Hsieh and Ruther (2017) documented numerous issues facing sexual minority people seeking health care, including ongoing use of emergency departments for primary care; delayed or unmet care needs due to cost; and delayed or unmet care needs for nonfinancial reasons, such as
not being able to get an appointment with a medical provider or lacking transportation to a provider’s office. Gonzales and Henning-Smith (2017b) similarly found that gender-nonconforming people in a 2014–2015 BRFSS sample from 27 states and Guam were almost twice as likely as a reference group of cisgender women to have unmet care needs due to financial issues (aOR: 1.93; 95% CI: 1.02, 3.67), and they were more than twice as likely not to have received a routine check-up in the previous year (aOR: 2.41; 95% CI: 1.41, 4.12). There is a lack of data on utilization among people with intersex traits.
Quality of Care and Health Professions Training
Common frameworks for quality improvement in health care include the six aims of safety, timeliness, effectiveness, efficiency, patient-centeredness, and equity set forth by the Institute of Medicine (2001) and the “triple aim” of improved patient experiences of care, improved population health outcomes, and reduced costs developed by the Institute for Healthcare Improvement (Berwick, Nolan, and Whittington, 2008). Scant research has explored quality of care issues, including definitions, priority outcomes, and measurement, among SGD populations. Another aspect of care quality is attention to the social determinants of health at the population level and to the social needs of individuals in health care contexts. Major negative social influences on the health of SGD populations include but are not limited to discrimination and a lack of access to culturally responsive providers; family and peer rejection and bullying; unemployment and poverty; and a dearth of feelings of community cohesion, safety, and participation (IOM, 2011b). These generate social needs such as trauma, housing insecurity, financial strain, and social isolation, particularly among groups such as SGD youth and older adults. It is important for researchers, care providers, and policy makers to develop and evaluate targeted efforts to address social determinants of health and meet social needs for SGD people. The experiences of SGD patients have also not been fully explored in the context of new care delivery models intended to improve quality, coordinate care, and restrain costs, such as accountable care organizations and patient-centered medical homes (National LGBT Health Education Center, 2016).
Regardless of how care delivery is organized, providing cultural and clinical competency training about SGD populations for the entire health workforce is critical to ensuring that SGD people can access high-quality care. Training in providing culturally responsive and clinically appropriate care for SGD people needs to begin early for medical students and other health professions trainees, including but not limited to nurses, physician assistants, and nurse practitioners (AMA, 2019; Obedin-Maliver et al., 2011; Streed et al., 2019b). The American Association of Medical Colleges
Another strategy for promoting cultural responsiveness to SGD concerns in health care settings is encouraging the career development of SGD-identified health professionals. Sexual and gender diversity, alongside other forms of representation such as racial diversity, strengthens the health care workforce by bringing in new perspectives to inform the delivery of care and helping patients build trust with providers whose backgrounds mirror theirs (Tanner, 2020). Unfortunately, research indicates that SGD people remain significantly underrepresented in the scientific workforce, and many workforce diversity initiatives—such as those supported by the National Institutes of Health (NIH)—do not include SGD populations despite the designation of sexual and gender minorities as an NIH health disparity population in 2016 (Freeman, 2018).
In terms of SGD cultural responsiveness among practicing providers, a 2016 systematic review by the Agency for Healthcare Research and Quality called for clearer definitions of cultural competency for LGBT populations, clarification on the relationship between cultural competence and patient-centered care, and greater availability and assessment of training curricula (Butler et al., 2016). In 2020, the Human Rights Campaign’s Healthcare Equality Index, which provides training and assesses LGBT cultural competency at hospitals and other health care organizations across the country, reported that the 765 health care facilities evaluated nationwide in the previous year had accumulated more than 150,000 hours of LGBT-specific cultural competency training (Human Rights Campaign Foundation, 2020).
Another resource related to cultural responsiveness in working with SGD patients are the federal Culturally and Linguistically Appropriate Services Standards, which include sexual orientation and gender identity among aspects of patient identity that require attention and respect from care providers (Office of Minority Health, 2013). The federal Substance Abuse and Mental Health Services Administration (SAMHSA) also promotes cultural competency training around sexual and gender diversity (SAMHSA, 2020), and the Health Resources and Services Administration (HRSA), which oversees the community health centers program and the Ryan White program, funds the National LGBT Health Education Center at Fenway Health, a federally qualified community health center located in Boston that specializes in serving LGBTQ people and people living with HIV.12 The National LGBT Health Education Center provides a variety of downloadable resources and continuing medical education modules on
culturally responsive and clinically appropriate care for LGBTQ people and people with intersex traits.
In addition to the National LGBT Health Education Center, HRSA supports the Center of Excellence for Transgender Health at the University of California at San Francisco, which conducts research and publishes care guidelines and other resources about various aspects of transgender health, particularly in relation to HIV.13 Between 2012 and 2017, HRSA partnered with the Center of Excellence and several other community-based organizations on a Special Project of National Significance that investigated strategies for engaging and retaining HIV-positive transgender women of color in high-quality care. Important factors identified in this project included providing transgender-specific cultural and clinical competency training for the health care workforce; addressing social determinants of health, such as housing, as part of the provision of health care services; and recognizing the central role that gender-affirming services and personal empowerment can play in improving care and outcomes for transgender people living with HIV, particularly transgender women of color (Health Resources and Services Administration, n.d.; Rebchook et al., 2017). Resources on serving other specific SGD populations have also been created by both public and private entities: in 2010, the federal Administration on Aging (now the Administration for Community Living) funded the creation of the National Resource Center on LGBT Aging to provide information and resources for health care personnel working with LGBT elders,14 and organizations such as Lambda Legal have published guidelines for hospitals on establishing affirming policies for transgender people (Lambda Legal, 2016) and people with intersex traits (Lambda Legal, 2018).
Alongside cultural and clinical competency training and a diverse health professions workforce, data collection about sexual orientation, gender identity, and intersex status in health care and public health activities is a critical component of understanding and effectively addressing health disparities among SGD populations. Both Healthy People 2020, released in 2010, and Healthy People 2030, released in 2020, call for an increase in the number of population health surveys that include sexual orientation and gender identity measures,15 and federal regulations governing incentive programs for electronic medical records require that certified systems have the capacity to collect, store, and retrieve structured data on sexual orientation and gender identity (Cahill et al., 2016). The NIH Sexual and Gender Minority Research Office also promotes research into the health of
The first U.S. clinics providing gender-affirming care to transgender individuals opened in the 1960s and 1970s. Practice and research in the field of transgender health, however, was stymied in the 1980s and 1990s by the spread of public and private insurance exclusions for gender-affirming care. As these exclusions have begun to be removed, there has been exponential growth in evidence regarding the medical necessity of this care, and gender affirmation has emerged as a core intervention to improve the health and well-being of transgender people. This section reviews the components of and clinical and population evidence concerning gender affirmation.
Components of Gender Affirmation
Broadly speaking, gender affirmation is a process by which people who identify as transgender, non-binary, or gender diverse take steps to fully express their true gender. (An older but still common term for the process of gender affirmation is gender transition.) Gender affirmation may have social, legal, and medical components. Socially, people may use a name or pronoun different from those they were assigned at birth, or they may change aspects of their gender expression, such as hairstyle and clothing. Legal affirmation may include name or gender marker changes on identification documents—such as passports, driver’s licenses, and birth certificates—which are affected by state and federal laws and policies. Gender-affirming clinical care may include psychosocial support, hormone therapy, and surgeries.
Psychosocial support for gender affirmation typically focuses on reducing emotional distress and supporting decision making regarding social, legal, and medical steps. Some young transgender people and their families opt for medication to delay the onset of puberty. Adults and some adolescents may take feminizing or masculinizing hormones to achieve gender-congruent secondary sex traits, often in conjunction with medications that suppress menses or block androgens. Many transgender adults and older adolescents undergo surgery to align the appearance of their face, chest or breasts, body shape, and genitals with their gender, and some may also pursue speech therapy or hair removal. Gender affirmation is different for every person: some people may take only social or legal steps, while others may need gender-affirming prescriptions or medical procedures. Regardless
of an individual’s path in relation to gender affirmation, social support and integrated, multidisciplinary care are essential for all transgender people, especially youth, and are consistently associated with improved mental health, social involvement, and self-esteem (Rafferty, Committee on Psychosocial Aspects of Child and Family Health, and Committee on Adolescence, 2018).
Guidelines and Policies Related to Gender Affirmation
Clinicians who provide gender-affirming psychosocial and medical services in the United States are informed by expert evidence-based guidelines. In 2012, the World Professional Association for Transgender Health (WPATH) published version 7 of the Standards of Care for the Health of Transgender, Transsexual, and Gender-Nonconforming People, which have been continuously maintained since 1979, and revisions for version 8 are currently under way (Coleman et al., 2012). Two newer guidelines have also been published by the Endocrine Society (Hembree et al., 2017) and the Center of Excellence for Transgender Health (UCSF Transgender Care, 2016). Each set of guidelines is informed by the best available data and is intended to be flexible and holistic in application to individual people. All of the guidelines recommend psychosocial support in tandem with physical interventions and suggest timing interventions to optimize an individual’s ability to give informed consent. Mental and physical health problems need not be resolved before a person can begin a process of medical gender affirmation, but they should be managed sufficiently such that they do not interfere with treatment.
A major success of these guidelines has been identifying evidence and establishing expert consensus that gender-affirming care is medically necessary and, further, that withholding this care is not a neutral option (World Professional Association for Transgender Health, 2016). A number of professional medical organizations have joined WPATH in recognizing that gender-affirming care is medically necessary for transgender people because it reduces distress and promotes well-being, while withholding care increases distress and decreases well-being (American Academy of Family Physicians, 2012; American Academy of Pediatrics, 2018; American College of Nurse Midwives, 2012; American College of Obstetricians and Gynecologists, 2011; AMA, 2008; American Psychiatric Association, 2018; American Psychological Association (APA), 2008, 2015; Endocrine Society, 2017). Accordingly, public and private insurers have expanded access to gender-affirming care; some have done so proactively, while others have been required by state and federal nondiscrimination laws to remove coverage exclusions (Baker, 2017).
Coverage requirements for gender-affirming care typically rely on an overarching principle of parity between medically necessary services for transgender and cisgender people. Treatments that are gender affirming for transgender patients are covered by public and private insurers for
intersex and cisgender people for a variety of conditions, including genital difference, endocrine disorders, cancer prevention or treatment, and reconstructive surgeries following an injury. Examples of these services include testosterone or estrogen replacement therapy after surgery or menopause, vaginoplasty after pelvic surgery or for women with vaginal agenesis in the context of an intersex condition, and phalloplasty for cisgender male service members injured in war (Baker et al., 2012; Balzano and Hudak, 2018; Spade et al., 2009).
As this report goes to press, 24 states and the District of Columbia have enacted laws or made administrative changes prohibiting transgender-specific insurance exclusions in private coverage (Movement Advancement Project, 2020a). However, Medicaid programs in 10 states continue to explicitly exclude gender-affirming care for transgender individuals, and many states do not address the issue of this coverage in Medicaid (Mallory and Tentindo, 2019). At the federal level, the Medicare program removed its exclusion for “transsexual surgery” in 2014 (HHS, 2014), though coverage decisions related to gender-affirming surgeries are still made on a case-by-case basis (CMS, 2016). As discussed above, Section 1557 of the Affordable Care Act also has substantial ramifications for coverage of gender-affirming care: the 2016 HHS regulation embraced the principle of parity and prohibited categorical exclusions of gender-affirming care under the rubric of sex nondiscrimination. This aspect of the regulation remains contested in court, but it is expected that the original regulation’s specific protections for transgender people will be found to be well within the scope of federal law and the agency’s authority (Keith, 2020).
In order to justify coverage for gender-affirming care, insurance providers in the United States and most other countries require a supporting diagnosis. In 2013, the Diagnostic and Statistical Manual of Mental Disorders (DSM), 5th edition (American Psychiatric Association, 2013) replaced the diagnosis of gender identity disorder with gender dysphoria. Whereas gender identity disorder was perceived as pathologizing a person’s gender identity, gender dysphoria emphasizes the clinically significant distress and impairment that can accompany incongruence between assigned sex and gender identity (Robles et al., 2016). A person who experiences no distress or impairment due to this incongruence will not meet diagnostic criteria for gender dysphoria. More recently, the International Classification of Diseases, 11th revision (WHO, n.d.) has replaced transsexualism and gender identity disorder with gender incongruence and moved the diagnosis out of the mental and behavioral disorders chapter and into a new chapter on sexual health.
Many insurers and some health care providers require documentation that an individual meets guideline requirements, including diagnostic criteria for gender dysphoria, as a prerequisite for hormonal or surgical
treatment. Because of the power differential inherent in this construct, this practice has been described as “gatekeeping” and can function as a significant barrier to accessing care. In a survey of transgender adolescents, for instance, participants described distress at having to prove to a mental health provider that they were “trans enough,” having to wait for approval for treatment, and perceiving that their therapist feared legal liability should a person later regret the treatment (Gridley et al., 2016). Even transgender people with insurance coverage and access to providers report difficulty in navigating diagnosis-based requirements imposed by providers and insurers (James et al., 2016). Over the past 10 years, some U.S. medical professional organizations have increasingly moved to reduce psychiatric gatekeeping by shifting toward an informed consent and shared decision-making model, especially for adults (Schulz, 2018). Some countries have further underscored that transgender identity is not a pathology by recognizing gender affirmation as fundamental to the human right to self-definition and removing requirements that transgender people seeking gender-affirming medical care present with a diagnosis such as gender dysphoria (Arístegui et al., 2017).
Outcomes of Gender-Affirming Interventions
The evidence base for gender affirmation across age groups has grown rapidly over the last decade. For transgender youth who have not yet reached puberty, social affirmation and support are primary interventions. Using data from electronic records from the Kaiser Permanente system, recent work has suggested that prepubescent transgender children experience increased rates of mental health problems, especially anxiety, depression, and attention deficit disorders, relative to cisgender children (Becerra-Culqui et al., 2018). However, research also shows that, when transgender children in this age group are socially affirmed and supported by their families, their rates of depression are much nearer to those of cisgender children (Durwood, McLaughlin, and Olson, 2017). In one study, transgender youth who were socially affirmed had elevated rates of anxiety relative to their cisgender peers, but this difference was not clinically significant and may have reflected ongoing social stigma and minority stress (Olson et al., 2016). Another study found that using transgender youths’ chosen names in home and at school was associated with reduced depression, suicidal ideation, and suicidal behavior (Russell et al., 2018).
Puberty blockers, typically gonadotropin-releasing hormone analogs, have been used since at least the late 1990s to prevent development of irreversible secondary sex traits and to give youth more time to explore their gender identity (Cohen-Kettenis and Van Goozen, 1998). In 2014, a landmark paper provided longitudinal data from a cohort of youth in the Netherlands: among this group, puberty suppression, followed several years
later by gender-affirming hormones and surgery, was effective in reducing gender dysphoria and restoring well-being equal to or better than same-age cisgender young adults (de Vries et al., 2014). Though most data on puberty suppression are limited and drawn from convenience samples in European clinics, this fully reversible gender-affirming intervention appears to confer improved psychological functioning and may reduce gender dysphoria (Mahfouda et al., 2017).
There is inconsistent and limited evidence regarding risks of irreversible low bone density and infertility (Chew et al., 2018; Mahfouda et al., 2017; Rafferty, Committee on Psychosocial Aspects of Child and Family Health, and Committee on Adolescence, 2018). In recognition of these risks, guidelines recommend monitoring bone density and counseling on fertility preservation prior to treatment (Hembree et al., 2017). Of note, while evidence indicates that social affirmation and puberty suppression are low risk and effective interventions for young transgender youth, there may be a significant delay between recognition and disclosure of gender incongruence: in one cohort, participants reported identification of gender incongruence on average at age 8 and disclosure to caregivers on average at age 17 (Olson et al., 2015). Support from parents and affirmation of gender diversity are critical to creating safe opportunities for young people to access the psychosocial and medical care that they need in a timely manner.
Hormone therapy with testosterone or estrogen is a common gender-affirming treatment for transgender adults and older adolescents. Though limited by heterogeneity of methodology, regimen, and outcomes measures, systematic reviews and meta-analyses consistently find that gender-affirming hormone treatment is associated with significant reductions in gender dysphoria, psychological symptoms, and psychiatric diagnoses and with improved markers of well-being, including quality of life, interpersonal functioning, psychological adjustment, sexual function, body satisfaction, and self-esteem (Costa and Colizzi, 2016; Dhejne et al., 2016; Keo-Meier et al., 2015; Murad et al., 2010; Nguyen et al., 2018; Rowniak, Bolt, and Sharifi, 2019; White Hughto and Reisner, 2016).
Both the WPATH and Endocrine Society guidelines identify age 16 as a general starting point for gender-affirming hormones, with the recognition that some adolescents benefit from earlier treatment (Coleman et al., 2012; Hembree et al., 2017). Evidence for hormone therapy in adolescents comes largely from outside of the United States and inconsistently tracks outcomes (Chew et al., 2018; Olson-Kennedy et al., 2016). The data available suggest that hormone therapy in adolescents likely yields reductions in dysphoria and distress and improvements in well-being similar to those in adults (Mahfouda et al., 2019). Gender-affirming hormone therapy can be managed for most patients by primary care providers,
as it typically involves long-term maintenance on doses similar to those used for cisgender patients with conditions such as hypogonadism (Wylie et al., 2016).
Surgeries involving the genitals or secondary sex characteristics can also improve health and well-being among transgender people and are an important and medically necessary aspect of gender-affirming care (Bailey, Ellis, and McNeil, 2014; Castellano et al., 2015; Murad et al., 2010; Passos et al., 2020; Wernick et al., 2019). Many factors affect an individual’s need for and access to gender-affirming surgeries. In the 2015 USTS, only 25 percent of respondents had undergone some form of gender-affirming surgery, such as genital reconstruction or chest reconstruction, and having surgery was correlated with higher incomes (James et al., 2016). Respondents also reported varying degrees of experience with or need for specific procedures: 97 percent of transgender men had or needed chest reconstruction surgery, and 22 percent of transgender men had or needed phalloplasty. Similarly, 95 percent of transgender women had or needed hair removal procedures, and 76 percent had or needed vaginoplasty. Non-binary individuals generally had and needed fewer surgeries than their binary-identified counterparts: 48 percent of non-binary individuals assigned female at birth had or needed chest surgery, and 12 percent of non-binary individuals assigned male at birth had or needed vaginoplasty.
Surgeries for transgender men and other trans-masculine people may include bilateral chest reconstruction, salpingo-oophrectomy (removal of the ovaries and fallopian tubes), hysterectomy, genital reconstruction (metoidioplasty or phalloplasty with or without prosthesis), and, rarely, vocal surgery. Chest reconstruction, which involves removal of breast tissue and nipple preservation, is associated with significant improvements in mental health and well-being among trans-masculine adolescents and adults (Agarwal et al., 2018; Mahfouda et al., 2019; Van Boerum et al., 2019). A systematic review of studies of genital surgeries that included metoidioplasty indicated that 93 percent of patients were satisfied with the outcome, including preserved erogenous sensitivity, despite significant rates of postoperative complications (Morrison et al., 2016). A systematic review of penile prosthetic outcomes for 792 transgender men over a mean followup period of three years found inconsistent reporting of sensory, urinary, satisfaction, and sexual outcomes after surgery, with 36 percent reporting prosthesis complications (Rooker et al., 2019).
Surgeries for transgender women and other trans-feminine people may include breast augmentation, facial feminization, vocal surgery, orchiectomy, and vaginoplasty. Some studies have shown improvements in quality of life and high patient satisfaction following facial feminization procedures for trans-feminine individuals, including reshaping the contours of the face and larynx (Ainsworth and Spiegel, 2010; Van Boerum et al., 2019). A
systematic review of vaginoplasty for transfeminine individuals identified 26 studies with a total of 1,563 patients; although measures used to track outcomes varied between studies, and complications were frequent, with neovaginal stenosis the most common, patients tended to report high ratings in both sexual function and satisfaction after surgery (Horbach et al., 2015).
The research regarding outcomes for surgery in youth under 18 is sparse, in part because it is generally not clinically recommended for legal minors, though there is only a small amount of low-quality evidence that supports this limitation (Hembree et al., 2017). Chest masculinization is sometimes appropriate for youth 16 or older (Coleman et al., 2012), and some surgeons perform vaginoplasty on minors under specific circumstances (Milrod and Karasic, 2017). Several studies provide positive evidence regarding the benefits of chest reconstruction in minors, with reduced depressive and anxious symptoms and improved chest dysphoria; the most common complications were changes in sensation and scar cosmesis (Mahfouda et al., 2019). There are very few data regarding genitoplasty for minors.
As noted above, available evidence generally indicates that gender-affirming medical interventions, including surgeries, are associated with improvements in gender dysphoria, mental health, and quality of life for transgender people. Evidence also suggests, however, that mental health conditions can persist after treatment: for instance, a 2011 Swedish registry study of 324 patients who had undergone gender-affirming surgeries between 1973 and 2003 found increased rates of suicide attempts and psychiatric hospitalizations relative to population controls (Dhejne et al., 2011). The study notes that surgeries did alleviate gender dysphoria, and the study was unable to determine how patients might have fared without surgery. When a more recent Swedish registry study tracked mental health treatment utilization among people with a gender incongruence diagnosis relative to people without gender incongruence between 2005 and 2015 (N = 2,679), time since gender-affirming surgery was associated with reduced need for mental health services (aOR: 0.92; 95% CI: 0.87, 0.98) (Bränström and Pachankis, 2019). A reanalysis of these data compared individuals with gender incongruence who had gender-affirming surgery with those who did not and found comparable rates of reduced need for treatment for mood disorders between the groups, but higher rates of treatment for anxiety disorders among the group who did have surgery (aOR: 1.40; 95% CI: 1.00, 1.97) (Bränström and Pachankis, 2020). The authors note that the comparator nonsurgical group is heterogeneous, including a mixture of patients who both did and did not want surgery. Furthermore, as was discussed in detail in Chapter 11, transgender people have significantly elevated rates of mental health problems due not just to the experience of
gender dysphoria but also because of minority stress and stigma. While social and medical affirmation reduce gender dysphoria and can mitigate the impact of social factors, such as discrimination and family rejection, medical affirmation may not fully resolve or protect from experiences of stigma and stress. Future studies examining outcomes of gender affirmation should assess and control for these factors. Related research needs include exploration of factors that can promote resilience in different family and community settings and across the life course (Bockting et al., 2016).
Another major limitation in research on postsurgical outcomes is the absence of patient-reported outcome measures that have been validated in transgender and non-binary post-operative patient populations (Andréasson et al., 2018; Barone et al., 2017; Dy et al., 2019). Recent data overall suggest that satisfaction after gender-affirming surgeries is high and risk of regret is very low. For example, the Center of Expertise on Gender Dysphoria at the Free University Medical Center in Amsterdam published results from 43 years of clinical care in which regret was reported in only 14 patients (0.5%) of the more than 5,300 patients who underwent gonadectomy as part of gender affirmation (Wiepjes et al., 2018). A smaller study found that only 1 of 68 patients who received chest masculinization surgery experienced regret “sometimes” (Olson-Kennedy et al., 2018), consistent with findings from older research (Gijs and Brewaeys, 2007). Similarly, a 2018 systematic review and meta-analysis of 46 articles with 3,716 cases of vaginoplasty for transgender women reported a cumulative rate of regret of 1 percent, compared with an overall satisfaction rate of 92 percent across different surgical techniques (Manrique et al., 2018). While many studies do not qualitatively assess degree and reasons for regret, in one study patients who reported regret with surgeries reported mild regret and attributed this to cosmetic or functional outcomes rather than the decision to have surgery (van de Grift et al., 2017).
Substantial progress has been made over the past decade in research on outcomes of gender-affirming interventions, and there are ample opportunities for improvement. To address the scarcity of data and difficulties extrapolating findings from relatively homogeneous European samples, a United States-based comprehensive registry that tracks patient-centered outcomes for both youth and adults could lead to valuable insights on the benefits of medically supervised gender affirmation (Kimberly et al., 2018). Much remains to be learned regarding optimal timing and risk profiles for surgeries and other medical interventions, aided by standardized and validated tools for body satisfaction, gender-related quality of life, gender dysphoria, and mental health (Olson et al., 2016). Standardized assessment and reporting of outcomes are particularly essential for helping clinicians and patients understand surgical options. In this area, too, more attention is needed to populations that tend to be invisible or underrepresented in
clinical research, especially transgender people of color and non-binary individuals. Very little is known about the experiences and options for treatment for transgender individuals with intersex traits, especially those who had irreversible treatments as children. Overall, however, the evidence indicates that gender-affirming interventions, including social affirmation, hormonal treatment, and surgeries, are medically necessary for reducing distress and improving the health and well-being of transgender people.
Efforts to change sexual orientation or gender identity, which initially gained traction in the 1960s and which are often referred to as conversion or reparative therapies, assume that non-cisgender and non-heterosexual identities are abnormal. In 2009 the APA produced a landmark report that systematically reviewed the evidence of efficacy for sexual orientation change efforts (APA, 2009). Most of this research was conducted prior to 1981, and very few studies were experimental in design. The task force found that some people sought sexual orientation change efforts due to distress over their sexual orientation but that the treatments were unable to reduce same-sex attractions or increase other-sex attractions. Furthermore, there was evidence that individuals experienced harm from these treatments, including sexual dysfunction, depression, anxiety, and suicidality. With regard to gender identity, while interest in the so-called “desistence” of transgender identity has been informed by studies suggesting that as high as 80 percent of prepubertal youth presenting to pediatric gender clinics ultimately do not identify as transgender, many of the youth included in these studies did not meet full DSM criteria for a gender incongruence diagnosis (Olson, 2009). Recent evidence supports that early social affirmation of transgender identity is associated with good outcomes (Olson et al., 2016; Durwood, McLaughlin, and Olson, 2017) and that lack of social affirmation correlates with depression, anxiety, and suicidality (de Vries et al., 2016; James et al., 2016).
Consequently, sexual orientation and gender identity conversion efforts have fallen out of favor in mainstream psychological and psychiatric practice. By the time of the 2011 Institute of Medicine report, many medical organizations had issued statements condemning sexual orientation change efforts based on the lack of efficacy and evidence of harm. Many of these organizations have since updated their positions to decry conversion therapy for both sexual orientation and gender identity (AMA and GLMA: Medical Professionals Advancing LGBTQ Equality, 2018; American Academy of Child and Adolescent Psychiatry, 2018; Rafferty, Committee on Psychosocial Aspects of Child and Family Health, and Committee on Adolescence, 2018; SAMHSA, 2015; Streed et al., 2019a).
However, there is recent evidence that LGBTQ youth and adults continue to be exposed to conversion therapy. A 2019 report from Williams Institute estimated that 698,000 adults between ages 18 and 59 have undergone conversion therapy from a licensed professional or religious advisor, of whom 350,000 were adolescents when treated (Mallory, Brown, and Conron, 2019). The same study estimated that an additional 57,000 youth will receive conversion therapy from a health care or religious provider before 18 years of age. Among 25,000 LGBTQ youth respondents to a 2019 national survey, 67 percent reported that someone attempted to convince them to change their gender identity or sexual orientation (Trevor Project, 2019). A survey of 762 marriage and family therapists and members of the American Academy of Marriage and Family Therapists, which has a position statement against conversion therapy, found that 19.4 percent of respondents believed it was ethical to practice sexual orientation change therapy, and 3.5 percent of respondents had done so. This belief was associated with higher levels of negative beliefs about LGB clients than those of other therapists (McGeorge, Carlson, and Toomey, 2015).
A recent survey was among the first to evaluate the link between sexual orientation change therapy and the health of young people: among 245 white and Latinx LGBT individuals between the ages of 21 and 25, exposure to conversion efforts within or outside of their families during adolescence was associated with higher family religiosity, lower family socioeconomic status, and higher individual gender nonconformity (Ryan et al., 2018). In addition, exposure to conversion efforts during adolescence was significantly associated with increased suicidal ideation, suicide attempts, and depression, as well as diminished life satisfaction, self-esteem, social support, educational attainment, and lower income in young adulthood.
A systematic narrative review of gender identity conversion efforts found few data and a notable absence of research about their effects on both adolescents and adults (Wright, Candy, and King, 2018). However, a recent study using data from the 2015 USTS found that 14 percent of respondents had been exposed to gender identity conversion therapy during their lifetimes; exposure was associated with significantly higher rates of past-month severe psychological distress and lifetime suicide attempts compared with respondents who had not been exposed to such therapy (Turban et al., 2019). Exposure to gender identity conversion therapy before age 10 was associated with nearly twice the rate of lifetime suicide attempts.
The available evidence suggests that sexual orientation and gender identity conversion efforts are ineffective and dangerously detrimental to the health of SGD populations, especially for minors who are unable to give informed consent. As of early 2020, 20 states, the District of Columbia, Puerto Rico, and a number of municipalities had outlawed sexual orientation and gender identity conversion therapy for minors (Move-
ment Advancement Project, 2020b). As growing numbers of professional organizations and governments call for or legislate an end to conversion therapy, particularly for minors, it is important for clinicians working with SGD populations to understand the effects that these experiences can have on individuals, even many years later. Research on strategies for helping individuals who have experienced conversion therapy to heal and recover is essential. In order to end the practice of conversion therapy, it is not sufficient for professional organizations to recommend against conversion therapy; rather, professionals may require dedicated and specific training on the inefficacy and danger of conversion treatments, and insurance providers should consider limiting coverage for these non-evidence-based practices.
The most expansive estimations of the prevalence of intersex traits, including any variation in any marker of sex (chromosomes, internal reproductive anatomy, external genital shape, and secondary sex traits), concludes that up to 1.7 percent of the population has an intersex trait (Fausto-Sterling, 2000). Estimates based on the number of people with clinically identifiable sexual or reproductive anatomic variations are closer to 0.5 percent (Nordenvall et al., 2014). Estimates for prevalence of infants born with obvious genital diversity, sometimes known as ambiguous genitalia, range from 0.03 percent to 0.1 percent (Blackless et al., 2000; Hughes et al., 2007; Thyen et al., 2006). Such variations can include differences in the length of the genital tubercule or glans (as in a shorter penis or longer clitoris), a narrow or absent vaginal opening, or presence of partially fused labia or a partially separated scrotum. This section focuses primarily on early genital surgery for children born with obvious genital diversity, which remains the most contentious area of clinical care—and increasingly, health law and policy—for persons with intersex traits (Dalke et al., 2020).
Genital Diversity and Early Genital Surgeries
Although some infants with genital diversity require urgent surgery to address urinary obstruction or exposed pelvic organs (Woo, Thomas, and Brock, 2010), many have no immediate medical concerns and do not require urgent medical treatment (Romao and Pippi Salle, 2017). Because the appearance of the external genitals is typically the primary datum for the sex assigned to infants at birth, genital diversity can lead to uncertainty about which sex a child with intersex traits should be assigned. Similarly, eventual gender identity cannot be readily predicted for many people with intersex traits based on the appearance of their genitals at birth (see more
detailed discussion below). Currently, clinicians and advocates alike typically recommend a binary but flexible sex assignment, informed by the balance of sex markers and the specific intersex condition the child has, which will contribute to the person’s gender identity later in life.
Early genital surgeries primarily seek to align genitalia with assigned sex. Feminizing surgeries reduce the size of a clitoris, shape a vulva, or create or lengthen the vagina of a child assigned female. Masculinizing surgeries may reposition a urethra that is not located at the tip of the penis or create a phallus for a child assigned male. Early removal of gonadal tissue may also be recommended to reduce risk of malignancy or the pubertal production of hormones (and therefore secondary sex traits) that are discordant with the child’s assigned sex. In the United States, many of these surgeries are performed in infancy.
In 2016, an international consensus group offered an update on genital surgery for children with obvious genital difference and identified a broad set of benefits for surgeries (Mouriquand et al., 2016). Physically, surgeries seek to promote “functional genital anatomy to allow future penetrative intercourse (as a male or a female)” (p. 141), as well as fertility, urinary function, menstruation, and the avoidance of malignancy and secondary sex traits that are discordant with assigned sex. Psychosocially, surgeries also purportedly “foster development of ‘individual’ and ‘social identities’,” reduce genital-related stigma, and support “the parents’ desire to bring up a child in the best possible conditions” (p. 142). Since the early 1990s, however, intersex advocates have called attention to the physical and emotional harms of surgery, especially when performed before a child is old enough to participate in the decision. Indeed, in the absence of cloacal exstrophy (exposure of pelvic organs), urinary obstruction, or current malignancy, there is no medical urgency for such surgeries; they can be safely deferred until a child is older. At the core of the debate is a question as to what to do and when: what, if any, surgeries should be performed on very young children? This question ultimately calls for the weighing of relative physical and emotional risks, benefits, and alternatives to such surgeries.
Synthesis of the evidence base is complicated by significant heterogeneity of anatomic and medical considerations, surgical procedures, and dynamic psychosocial aspects over the life course. The available research on outcomes also has significant methodological limitations, with many outcomes reported from single surgeons or programs and inconsistency in measurement instruments, study designs, sample sizes, reported outcomes, and follow-up periods. Studies often have insufficient postsurgical followup to evaluate outcomes of childhood interventions on adult physical, sexual, and psychological well-being. Many studies also lack an effective comparator group, as there are no standard nonsurgical pathways for children with genital difference.
A review of these surgeries follows, along with an assessment of what is known about the outcomes of these interventions. The risks and benefits of each group of surgeries are discussed together, as these tend to be specific to the physical intervention itself. Some psychosocial outcomes, however, are discussed in aggregate, to reflect more limited data and overlaps in psychosocial experiences among intersex variations.
Removal of the gonads yields two potential benefits in the form of risk reduction: avoiding gonadal malignancy and undesired secondary sex traits. The risk of malignancy tends to be higher for intra-abdominal testes or atypically developed gonads, but it has to be balanced against the potential benefits of hormone-producing tissue (Pyle and Nathanson, 2017). Individuals with complete androgen insensitivity syndrome (AIS) have very low risk of testicular malignancy in childhood or adolescence, do not develop masculine secondary sex traits in puberty, and derive a high bone health benefit from endogenous hormone production; in these cases, it is generally recommended to defer gonadectomy until after puberty. Individuals with gonadal dysgenesis (in which gonads do not fully develop into ovarian or testicular tissue) have a higher risk of malignancy with little hormone production, and childhood gonadectomy is consistently recommended (Mouriquand et al., 2016). Some assigned girls with a 46,XY karyotype, testicular tissue, and full or partial androgen response, as in partial AIS or 5-alpha reductase deficiency, have moderate or low risk of malignancy and less predictable responses to hormone production at puberty. Gonadectomy is sometimes considered for these children to reduce distress and uncertainty around a “mixed” puberty (Mouriquand et al., 2016).
There are significant risks from gonadectomy. Some people with typically developed intra-abdominal testes, as in complete AIS and 5-alpha reductase deficiency, may be capable of producing mature sperm with assisted reproductive technology (Finlayson et al., 2017; Kang et al., 2014). For such people, gonadectomy can amount to sterilization. Removal of sex hormone-producing gonadal tissue can lead to low bone mass, genital changes, sexual dysfunction, and mood changes, for which individuals may require a lifetime of hormone replacement therapy. If the surgery is performed prior to puberty, people may be prescribed hormones congruent with their assigned sex rather than identified gender. Importantly, recent evidence suggests that puberty blockers may be a viable nonsurgical alternative to support gender identity exploration and allow time for informed consent, and in most cases, surgery need not be done in early childhood (Canalichio et al., 2020).
Feminizing surgeries include clitoral and vaginoplasty surgeries. Clitoral surgery is most often recommended for 46,XX children with congenital adrenal hyperplasia (CAH) who are assigned female, with concerns primarily about genital “ambiguity” (Mouriquand et al., 2016). In recognition of inadequacies of earlier techniques, like clitoral amputation and recession, microsurgical approaches aim to preserve clitoral nerve and vascular supply, and in some cases they “bury” rather than remove parts of the clitoris should an individual wish to reverse the surgery in the future (Mouriquand et al., 2016). Vaginoplasty may also be recommended for assigned girls whose vaginas do not connect to the perineum, thereby limiting penetrative sex and impairing fertility and outflow of menstrual blood (Mouriquand et al., 2016). For assigned girls with shorter or absent vaginas and without uteruses (as in AIS, gonadal dysgenesis, or Mullerian agenesis), vaginoplasty carries the sole benefit of allowing penetrative intercourse.
There is some evidence that 46,XX women with CAH were satisfied with feminizing genital surgeries (Mouriquand et al., 2016). Reviewers have concluded from surveys of women who had undergone feminizing genitoplasty as children that women prefer earlier timing of surgery (de Jesus, 2018). Indeed, in one survey of adult women with CAH or AIS who had genital surgeries at an average of 3.8 years, 17 out of 24 reported that surgery had been done at the proper age (Fagerholm et al., 2011). However, these surveys are small and limited. Importantly, a large systematic review and meta-analysis found that only two studies surveyed 46,XX female CAH patients’ satisfaction with surgery, of which the majority were satisfied (Almasri et al., 2018).
Long-term data regarding the reversibility of and sensory and sexual outcomes from these procedures are lacking, especially for more novel microsurgical approaches. Data regarding preserved sexual function after clitoral surgery is challenged by studies revealing significant rates of long-term sexual dysfunction and anorgasmia (de Jesus, 2018). Because studies of sexual quality of life may be confounded by psychosocial issues, attempts have been made to study postsurgical sensitivity objectively with a device capable of analyzing thermal and vibratory sensation. Many patients, however, have refused to participate in such studies, which may reflect discomfort or even trauma associated with previous experiences of medical care (de Jesus, 2018). Limited data suggest unfavorable patient satisfaction with cosmesis after vaginoplasty, as well as a high incidence of postsurgical vaginal stenosis. If this occurs, patients may experience pain with intercourse and require self-dilation or repeat surgery. While there has been some evidence supporting benefit of surgery for women with CAH, multiple studies of adult women with CAH find less frequent sexual activ-
ity and lower frequency of orgasm, including among the small reported number of people with CAH who did not undergo surgery (de Jesus, 2018). Notably, there are no objective scales validated to assess sexual function in women with intersex traits. There are few data evaluating long-term urological complications after feminizing genitoplasty.
Masculinizing surgeries aim to facilitate standing urination, penetrative intercourse, and a “cosmetically pleasing appearance” (Winship, Rushton, and Pohl, 2017). These procedures include hypospadias repair and phalloplasty. Hypospadias is characterized along a spectrum from distal (urethra opening near, but not at, the tip of the penis) to proximal (urethra opening at the base of the penis). Most individuals with distal hypospadias do not have differences of sex development (DSD), so this variation is not reviewed here.
Proximal hypospadias is often associated with diversity of penile and scrotal appearance, and at least one of three children born with proximal hypospadias and an undescended gonad will have other features of a DSD, such as non-XY karyotype (Romao and Pippi Salle, 2017). Phalloplasty may be recommended for 46,XY assigned boys born with a smaller than usual, or absent, penis. Although many of these children were historically assigned female, longitudinal data have revealed higher rates of gender dysphoria for those assigned girls than those assigned boys (Meyer-Bahlburg, 2005), and there is some evidence that urologists increasingly favor male sex assignment (Diamond et al., 2011).
The primary cited benefit of proximal hypospadias repair is avoidance of distress due to difference and stigma (Bush and Snodgrass, 2017), which is accomplished through achieving decreased spraying with urination and capacity for penetrative intercourse. Although long-term outcome studies for proximal hypospadias do not consistently track lower urinary tract symptoms, some studies have reported rates of lower urinary tract symptoms as high as 100 percent after proximal hypospadias surgeries (Gong and Cheng, 2017). Multiple studies have found persistent penile curvature and dissatisfaction with cosmesis after masculinizing surgeries (Tourchi and Hoebeke, 2013), and there is no commonly used objective measure of penile appearance after surgery (Gong and Cheng, 2017). Very few outcome studies for masculinizing surgeries have evaluated erectile dysfunction, and “most pediatric urologists do not follow patients into adulthood and have little experience in sexual medicine” (Winship, Rushton, and Pohl, 2017, p. 287). One study found that more than two-thirds of adult men with proximal hypospadias reported some sexual dysfunction and decreased sexual quality of life after surgery (Chertin et
al., 2013). Reoperations and complications may contribute to urinary and sexual dysfunction, with complication rates ranging from 4 to 68 percent, and reoperation rates ranging from 23 to 52 percent (Gong and Cheng, 2017). Higher rates of reoperations and complications are associated with longer durations of follow-up, suggesting that long follow-up periods may be important elements of studies examining adverse postoperative outcomes (Gong and Cheng, 2017).
Psychosocial Outcomes after Genital Surgery
The absence of holistic and validated tools for assessment of sexual well-being and gender identity, patient satisfaction, and patient-centered surgical outcome measures present significant challenges in identifying robust conclusions regarding the psychosocial risks and benefits of early surgery. There are, however, some data regarding the outcomes of psychosocial distress and gender identity in the context of surgery.
Avoidance of distress due to social stigma and bodily difference has been offered as an indication for feminizing surgeries (de Jesus, 2018), masculinizing surgeries (Bush and Snodgrass, 2017), and gonadectomy for patients who may develop discordant secondary sex traits at puberty (Mouriquand et al., 2016). Of note, as discussed in Chapter 11, evidence indicates greater rates of psychological distress for individuals with intersex traits than the general population, but there is very little research exploring why. Rather, much of the research and clinical discourse reveals an implicit bias that genital or sexual difference is de facto abnormal and distressing and that “normalizing” surgery is a solution to this problem (Dalke, Baratz, and Greenberg, 2020). One series of qualitative studies suggested that 46,XX assigned and identified females with CAH experience stigma in medical, social, and sexual settings related to their genitalia and secondary sex traits; however, these studies included both women who did and did not have surgery, suggesting that surgery did not fully protect women from experiencing stigma (Meyer-Bahlburg et al., 2017a, 2017b, 2018). Of note, there are very few robust data exploring the benefits of surgery for patients with intersex traits, especially those who do not have CAH. Because standard practice has been to perform surgery early, however, there are few studies evaluating rates of psychosocial distress or satisfaction among individuals who did not undergo surgery, nor is there clear evidence that genital surgery itself reduces psychosocial stress (Roen, 2019). In a series of interviews, parents of children who did not undergo genital surgery reported that their children had attended school, had friends, and had not experienced bullying or harassment (Human Rights Watch, 2017).
There is some evidence that early genital surgery may unintentionally compound psychosocial distress. Multiple studies report that genital examinations in childhood can be experienced as intrusive, aversive, stigmatizing, and objectifying, particularly when children are not engaged in dialog with their providers (Roen, 2019). Qualitative research suggests that shame and a sense of “differentness” are correlated with both feminizing and masculinizing interventions: “going through surgery as a child might highlight bodily difference as stigmatising rather than facilitating the management of shame” (Roen, 2019, p. 517). This finding is consistent with information from intersex people themselves, who report experiences of anger, guilt, and trauma related to early surgery that was carried out without their consent, especially when they did not receive adequate information about their bodies or the procedures that were performed on them (Human Rights Watch, 2017).
Of particular interest in genital surgery is gender outcomes, particularly given the risk of developing a gender identity discordant with a sex that was assigned at birth and then surgically reinforced. Some intersex traits, such as complete AIS, complete gonadal dysgenesis, and proximal hypospadias without DSD, are associated with very low likelihood of gender dysphoria (Meyer-Bahlburg et al., 2016). Other intersex traits are associated with much higher rates, such as 46,XY individuals with cloacal exstrophy who are assigned female (Meyer-Bahlburg, 2005). A systematic review and meta-analysis found that 8 to 13 percent of 46,XX assigned female individuals with CAH did not identify as female (Almasri et al., 2018), which is much higher than the estimated 0.6 percent population prevalence of transgender identity among the general population (Flores et al., 2016). One very small, non-U.S. study found 46,XX assigned males with CAH can also experience gender dysphoria (de Jesus, Costa, and Dekermacher, 2019). Few data have been published on gender identity among individuals with partial AIS, 5-alpha reductase deficiency, or 17-beta hydroxysteroid dehydrogenase deficiency. Most studies evaluating gender identity among individuals with intersex traits have taken a binary view of gender, which could underreport rates of non-cisgender identities. Sex assignment at birth has become increasingly nuanced and focused on patient-specific recommendations (Kolesinska et al., 2014). Early and irreversible interventions may limit opportunities for gender affirmation later in life, which supports deferral of surgeries until the person’s gender identity and ability to participate in the decision are established.
As is discussed in Chapter 11, much of the psychosocial research on intersex issues focuses on the mental health of parents. This work suggests that parents of children with genital difference experience stress similar to parents of children with chronic illness and, in some cases, also have de-
pression, anxiety, and decreased mental health quality of life (Wisniewski, 2017). Parents report fearing that their children will be teased, excluded, or stigmatized because of their genital differences (Wisniewski, 2017), and reduction of parental distress is often cited as a benefit of early genital surgery. However, there have been no studies examining experiences of bullying among children with intersex traits, and thus no evidence is available to indicate that surgery reduces the risk of bullying. Surgeons may be more likely to find a child’s preoperative genital appearance unsatisfactory than parents (Nokoff et al., 2017), and this possibility raises the question of whether parents’ perceptions of their child’s genitals are influenced by the medical team’s implicit bias. Overall, there is no evidence that genitoplasty directly targets parental distress, nor is there evidence that parental distress is intolerable or cannot be addressed in other ways (Roen, 2019).
An important consideration around parents is the process by which they make decisions about their child’s health care. One ethical concern involved in this process is informed consent. Ethicists generally assume that parents can give informed consent for their child’s health care as actors in the child’s best interests (AMA, 2018). However, some scholars have suggested that, because the uniqueness of intersex surgery might affect a child’s fundamental human rights, a court order might be required for the parent to give informed consent (Dalke et al., 2020). Evidence has also challenged the integrity of informed consent at a micro-ethics level. One study of self-identified DSD clinics found gaps in informed consent processes: more than two-thirds of the clinics did not document discussion of risks of surgery, including additional procedures, sexual dysfunction, psychosocial distress, gender uncertainty, and that interventions could be deferred until a later time (Rolston et al., 2017). Even with sufficient information, the informed consent process may not be adequate when carried out with parents of a minor child, given the distress that parents experience (Tamar-Mattis et al., 2013). Many families lack access to psychological services to assist in information processing despite multiple consensus recommendations for such services (Rolston et al., 2017). There are emerging data suggesting that the way information is framed can bias families’ decision making. For instance, adopting a position of equipoise and patient-centeredness can unintentionally move families toward the surgeon’s recommended course of action (Timmermans et al., 2018), and several studies have suggested that families feel as though their options are “surgery or nothing” (Roen, 2019).
Alternatives to Genital Surgery
There is very little research regarding alternatives to surgical intervention. Some doctors have suggested that gonadotropin-releasing hormone analogs can be used in place of gonadectomy for pubertal suppression in
children whose gender identity or pubertal development is uncertain and that hormonal management of CAH can reduce the size of a clitoris as an alternative to surgery (Mouriquand et al., 2016). Vaginal dilation may be an option in place of vaginoplasty for some. The contours of psychosocial support, including limiting genital exams and engaging patients and families over time to involve them in decision making, are beginning to emerge but as yet have minimal supporting data (Roen, 2019). This approach offers the possibility of helping families and young people learn to cope with and reduce the distress that surgery seeks to, but may not, avert.
In an appraisal of the literature and expert opinion, the Endocrine Society has recommended that parents be counseled on the risks and benefits of surgery and be permitted to make what they feel is the best decision for their child (Speiser et al., 2018). Timmermans and colleagues (2018) found that this approach biases families toward surgery. A growing number of consensus groups and professional medical organizations, including the American Academy of Family Physicians17 and Physicians for Human Rights,18 have interpreted the risk-benefit ratio as unfavorable for early genital surgery in instances where the individual is too young to participate in the consent process (Elders, Sacher, and Armona, 2017; Krege et al., 2019; Toler and GLMA Policy and Government Affairs Committee, 2016). These organizations advise the provision of psychosocial support for both parents and children and deferral of early genital surgeries until the child can participate in the decision.
Several international human rights groups have identified early surgery in the absence of informed consent as a violation of the child’s human rights to autonomy and an open future, and even as a kind of medical torture (Amnesty International, 2017; Human Rights Watch, 2017; United Nations General Assembly Human Rights Council, 2013; WHO, 2014). In July 2020, Lurie Children’s Hospital in Chicago, Illinois, became the first hospital in the nation to publicly acknowledge the harms of early genital surgeries and to adopt a policy that “irreversible genital procedures should not be performed until patients can participate meaningfully in making the decision for themselves, unless medically necessary” (Shanley et al., 2020). Of note, while the statement committed to pausing all genital surgeries that were not medically necessary, it did indicate that there may be a difference in approach for individuals with intersex traits who have CAH relative to people who do not.
Overall, there is mixed evidence that surgery achieves its physical goals and scant evidence that it confers psychosocial benefit. The existing research does provide strong evidence of the risk of irreversible harm from
early genital surgery, including immediate postoperative complications and later revisions, as well as the potentially catastrophic risk of incorrect, surgically reinforced gender assignment. The absence of data on alternative affirming pathways means that there is very little evidence of benefit from deferring surgery. It also means, however, that there is very little evidence of harm from deferring surgery. Factoring in the human rights of children and evidence that individuals with diverse sexualities, bodies, and genders can and do thrive with affirmation and support from parents, peers, and communities, there is insufficient evidence of benefit to justify early genital surgery. Therefore, the deferral of surgery until a child can participate in the decision, except in scenarios with urgent medical need, such as urinary obstruction or immediate cancer risk, may optimize the benefits of informed consent, autonomy, and patients’ physical, social, and emotional well-being.
Access to comprehensive, affirming, and high-quality health care services is a human right for all people. Ensuring access to care for SGD populations includes building supportive and protective structures at all levels, from the broad societal level to the level of individual provider practices. At the societal level, laws that guarantee access to health care services, health insurance coverage, and public health programs for all, regardless of sexual orientation, gender identity, and intersex status, are critical to the health and well-being of SGD people. Laws and policies that provide affordable, comprehensive health insurance coverage, such as Medicaid expansion by all states or some form of universal coverage, could combat health risks such as uninsurance and poverty among SGD populations.
Health services and procedures that are particularly important for the health and well-being of SGD populations include but are not limited to pre- and post-exposure prophylaxis for HIV; HIV treatment and care; abortion, fertility, and other reproductive health services; affirming mental and behavioral health care services; and gender-affirming care for transgender people. Transgender people, as well as lesbians and bisexual women, also need access to timely and anatomically appropriate preventive screenings.
Important aspects of providing culturally responsive and clinically appropriate care for SGD populations include but are not limited to creating affirming health care environments; using forms that are inclusive of diverse
identities and family structures; seeking to address social determinants of health and social needs; and requiring routine, high-quality cultural and clinical training on working with SGD populations for the health care and public health workforce. Efforts to promote quality of care and care coordination may have differential effects on populations experiencing disparities, making it important to assess the effects of these efforts on groups such as LGBT people, people with intersex traits, and intersectional groups such as LGBT people of color and people living with HIV. Entities that provide resources and guidance on affirming health care policies and environments for SGD populations include the Academy of Physician Assistants, GLMA: Health Professionals Advancing LGBTQ Equality, Association of American Medical Colleges, American Psychological Association, American Academy of Pediatrics, American Medical Association, National LGBT Health Education Center, and The Joint Commission.
Gender-affirming care for transgender people, including non-binary and other gender diverse people, is an essential and medically necessary intervention to improve health and well-being. Provision of this care needs to be individualized and conducted in partnership between patients and their providers. Insurance coverage of gender-affirming services and procedures by public and private payers, according to the most updated expert standards in the field and without inappropriate age or other restrictions, is necessary to facilitate access to these services and to avoid discrimination on the basis of sex and gender identity.
Conversion therapy to change sexual orientation or gender identity can cause significant and life-long trauma. Elective genital surgeries on children with intersex traits who cannot participate in consent are similarly detrimental to health and well-being. The American Medical Association, American Academy of Family Physicians, American Academy of Pediatrics, American Psychiatric Association, American Psychological Association, GLMA: Health Professionals Advancing LGBTQ Equality, Physicians for Human Rights, the U.S. Department of Health and Human Services, and
the World Health Organization recommend that these procedures not be promoted or performed.
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