Pediatric Annals

CME 

Beyond the Guidelines: Challenges, Controversies, and Unanswered Questions

Anita Radix, MD, MPH, FACP; Manel Silva, MD, MPH

Abstract

Transgender and gender-nonconforming youth have unique medical and psychosocial needs that frequently go unmet. For youth who wish to have their physical appearance congruent with their gender identity, treatment guidelines are available that advocate the use of gonadotropin-releasing hormone (GnRH) analogues (puberty blockers) and cross-sex hormone regimens. Although medical transition was once considered highly controversial, there is a mounting body of evidence that providing a supportive and affirming environment, as well as appropriate medical intervention, results in improved health outcomes. Primary care pediatricians may be unaware of current guidelines and consequently the need for treatment and/or timely referrals. Transgender youth often face other hurdles to initiation of therapy, including refusal of care and harassment in medical settings, denial of coverage by insurance plans, and the high cost of puberty blockers. Because transgender youth younger than 18 years depend on their families for medical decision making, they may be unable to access necessary medical treatment when parents do not support their transition plan. Medical transition impacts many aspects of the medical system, such as insurance coverage, billing, electronic health records, and preventive health care maintenance. These issues may become more apparent with the implementation of the Affordable Care Act (ACA) and increased use of electronic records and clinical decision support. The implementation of the ACA may also present new opportunities and protections for transgender individuals. Primary pediatricians are often the first providers families and youth reach out to for advice, and they can assist families with negotiating these complex medical, legal, social, and economic challenges and optimizing access to safe and appropriate health care services.

[Pediatr Ann. 2014; 43(6):e145–e150.]

Abstract

Transgender and gender-nonconforming youth have unique medical and psychosocial needs that frequently go unmet. For youth who wish to have their physical appearance congruent with their gender identity, treatment guidelines are available that advocate the use of gonadotropin-releasing hormone (GnRH) analogues (puberty blockers) and cross-sex hormone regimens. Although medical transition was once considered highly controversial, there is a mounting body of evidence that providing a supportive and affirming environment, as well as appropriate medical intervention, results in improved health outcomes. Primary care pediatricians may be unaware of current guidelines and consequently the need for treatment and/or timely referrals. Transgender youth often face other hurdles to initiation of therapy, including refusal of care and harassment in medical settings, denial of coverage by insurance plans, and the high cost of puberty blockers. Because transgender youth younger than 18 years depend on their families for medical decision making, they may be unable to access necessary medical treatment when parents do not support their transition plan. Medical transition impacts many aspects of the medical system, such as insurance coverage, billing, electronic health records, and preventive health care maintenance. These issues may become more apparent with the implementation of the Affordable Care Act (ACA) and increased use of electronic records and clinical decision support. The implementation of the ACA may also present new opportunities and protections for transgender individuals. Primary pediatricians are often the first providers families and youth reach out to for advice, and they can assist families with negotiating these complex medical, legal, social, and economic challenges and optimizing access to safe and appropriate health care services.

[Pediatr Ann. 2014; 43(6):e145–e150.]

Pediatricians and adolescent specialists are often the first medical providers to evaluate children and adolescents experiencing gender incongruence or nonconformity and, therefore, have a unique opportunity to provide advice, information, and support both to patients and families.1,2 The Endocrine Society and the World Professional Association for Transgender Health (WPATH) have issued guidelines for the care of transgender children and adolescents and have recommended the use of gonadotropin-releasing hormone (GnRH) analogues to reduce the distress associated with puberty and allow time for the adolescents to explore their gender identity. However, there is great variability in the quality and timing of care received, due in part to parental attitudes, the age of the individuals seeking care, provider knowledge, insurance coverage, and concurrent bio-psychosocial issues. Anecdotally, the use of puberty suppression and cross-sex hormones have beneficial effects in terms of immediate mental health and physical outcomes, but less is known about long-term effects. Little academic research on either the immediate or long-term outcomes or effects of these interventions has been conducted among U.S. children and adolescents. This article attempts to address some of the complex and controversial issues that may arise and offer suggestions about how primary care providers can advocate on behalf of their patients.

Terminology and Guidelines

Transgender individuals are those whose gender identity does not align with their assigned or natal sex. Many, but not all, transgender individuals will seek social or medical interventions to reduce the dysphoria associated with gender incongruence.3 Guidelines for the treatment of transgender adults with cross-sex hormone regimens were first published in 1979; however, it was not until 1998 that the transition needs of children and adolescents were addressed.4 The Endocrine Society and WPATH both have policies supporting the use of GnRH analogues or “puberty blockers” to halt puberty, giving adolescents time to explore their gender identity, while also preventing the development of the secondary sexual characteristics of their natal sex (see Olson and Garofalo’s article in this issue for additional details).4,5 Current guidelines recommend that cross-sex hormones can be initiated at ages 16 to 18 to introduce the secondary sex characteristics of the experienced or affirmed gender, followed by options for gender-affirming surgeries if appropriate (see Steever’s article in this issue for additional details).

Access to Care

If the adolescent decides to pursue gender transition and initiate puberty blockers, these are usually initiated at Tanner stages 2 to 3;3–6 however, multiple barriers prevent access to appropriate and timely transition-related medical care. Data from a large transgender health clinic in Boston showed that youth often presented late in puberty (Tanner stages 3–4), when blockers were not optimally effective.7 Delays in appropriate and timely care on the part of providers may be due to a lack of knowledge about the medical options available, or even more concerning, a failure to refer because of unfounded fears about potential risks, the belief that gender dysphoria will dissipate over time, or a moral objection to treatment.

Medical providers may be poorly informed about transgender (as well as lesbian, gay, and bisexual) health issues. Even when knowledgeable providers exist, gender-nonconforming and transgender adolescents may not disclose their gender identity due to fear of a negative response.8 A recent survey of medical school curricula revealed that very little time was devoted to lesbian, gay, bisexual, and transgender (LGBT) issues, and less than a third of schools provided any information about transition-related health care for gender-nonconforming youth.9 The dearth of information continues during postgraduate training, resulting in transgender patients encountering providers who may be unclear about the current standards of care,10 an issue that has considerable consequences during adolescence, when timely referrals are critical. In addition, despite the proliferation of clinics and clinicians providing transition-related care to transgender adults, many will not provide cross-sex hormones to adolescents younger than age 18 due to concerns about the legal age of consent. Families who support transition care for their underage child will frequently have to travel long distances to access these services, entailing considerable out-of-pocket expenses.

An additional barrier to care has been discrimination in health care settings due to stigma surrounding transgender identity. A recent survey revealed that many transgender individuals reported being refused care or facing harassment and violence in health settings, which led to postponement of both routine and urgent health care.10 The Affordable Care Act (ACA), signed into law in 2010, prohibits discrimination on the basis of sex (which includes gender stereotyping and gender identity) in facilities receiving federal funding. The new law also prevents children younger than age 19 from being denied health coverage due to pre-existing conditions. Both of these protections should hopefully improve access to potentially life-saving health care for transgender youth.

Is This Just A Phase?

The clinician who is providing care to the transgender adolescent should be aware of the controversies and questions regarding medical transition. The first question is whether gender identity naturally fluctuates in adolescence and if starting puberty blockers is, therefore, unnecessary and potentially harmful to natural gender identity development. Although the majority of prepubertal children diagnosed with gender dysphoria (GD) will have resolution before adolescence (“desisters”),11–13 those adolescents whose symptoms persist and intensify at puberty will usually have persistence of GD into adulthood.4,14,15 For these transgender adolescents, forcing them to undergo puberty in their natal sex can result in severe dysphoria, depression, suicidality, and self-harming behaviors.16,17 The use of puberty blockers allows a period of time for transgender adolescents to explore their gender identity while not undergoing the potential irreversible changes of puberty, such as facial hair, breast growth, and deepening of the voice, which can negatively impact on the ability to “pass” in their affirmed gender. Another benefit of puberty suppression is improvement in mental health outcomes, such as a lessening of depression and behavior problems.14 Youth who use blockers and later start cross-sex hormones are able to develop physical characteristics that more closely align with their affirmed gender and generally can avoid costly interventions (eg, shaving of the Adam’s Apple, facial feminization, and removal of the breasts) to reverse natal pubertal changes.14,18 The primary care provider should also explain that even though puberty will naturally resume if blockers are stopped, most adolescents will decide to continue with gender transition.14

The High Cost of Transition-Related Medical Care

Accessing insurance coverage for medical transition is extremely difficult, as most commercial insurance companies, as well as the public insurers, Medicaid and Medicare, and Children’s Health Insurance Program, exclude transition-related medical care. The cost of GnRH analogues are prohibitive; for example, the average dose of leuprolide (checked across seven national pharmacy chains) is $1092 per month. There are less expensive options for treatment; for example, depo-medroxyprogesterone can be used in transmen to stop menses; however, this option is less effective and may result in irregular or prolonged bleeding, which is often highly distressing to the patient. Medical providers may be able to advocate for their patients by writing a letter of medical necessity citing relevant portions of the guidelines from WPATH and the Endocrine Society.

Despite the current hurdles to accessing these medications, there are signs that change may be imminent. Several medical organizations, including the American Medical Association, the American Psychiatric Association, and the American Academy of Family Physicians, have made statements strongly advocating for the inclusion of transition-related health care in private and public health insurance policies.19 The ACA’s prohibition of discrimination based on sex and gender identity may eventually lead to legal challenges to current exclusionary language and pave the way to improved access to transition-related care, including essential medications such as blockers and cross-sex hormones.20

Gender, Electronic Health Records, and Billing Issues

Another feature of the ACA is to promote the use of electronic health records (EHRs) to reduce paperwork and administrative costs and improve quality of care, with financial incentives offered for the “meaningful use” of certified EHR technology. These new strategies introduce new concerns for transgender persons. EHRs may not have the flexibility to include both legal and preferred names, or natal and current gender markers, which may potentially cause delays in care as well as complex billing scenarios and insurance denials. For example, a young transman (eg, natal female) who has legally changed his gender marker to male but has not undergone genital surgery may not be identified by the EHR clinical reminder program as needing a cervical pap test. When the pap test is done, the insurance may deny the claim due to perceived discordance of “male gender” and “cervical pap.” Insurance denials can also occur when the EHR records a name different to the legal name. Medical providers can advocate for their EHRs to be transgender inclusive, such as through the addition of fields for preferred name and natal sex and current gender identity as well as preventive care templates that can be customized to reflect the needs of individual patients. With regard to billing and coding, some providers have objected to the use of the “gender identity disorder” (diagnostic codes 302.85 in ICD-9 and F64.1 in ICD-10), believing that issues related to a transgender identity do not equate to having a “disorder.” In addition, the exclusion that many insurance companies currently have for reimbursement for gender transition-related services can also challenge the selection of diagnostic billing codes, as using these codes may trigger a denial of payment for services rendered. As a result, there is considerable variation in the billing codes used throughout the United States. Some clinical centers have used non-specific diagnostic codes such as “endocrine disorder NOS” or “hypogonadism” to get appropriate primary care medical services covered. However, there is no national standard, and more work needs to be done in this area to ensure adequate access to comprehensive care.

Issues of Age and Informed Consent

The Endocrine Society and WPATH guidelines suggest that cross-sex hormone therapy can be started in 16-year-olds,4–6 although some providers make the case that earlier initiation should be considered on an individual basis.3,14 The legal age of consent in the United States is 18 years, which means that to undergo many of the recommended interventions, such as puberty suppression and initiation of cross-sex hormones, parental consent has to be obtained. In some circumstances, youth are able to access transition-related care without parental consent through legal mechanisms (as emancipated minors) and the mature minor doctrine. Even in states that abide by the mature minor doctrine, a lower age of 15 often prevails, thereby preventing the use of puberty blockers.21,22 Outside of legal emancipation or parental consent, many medical providers may be unwilling to implement these treatments. Unfortunately, parents may not give consent to medical transition, forcing youth to delay medical transition until age 18, long past the age when blockers are effective. In some situations, youth have resorted to obtaining hormones without medical supervision often via the Internet, or injecting silicone to feminize their bodies. Some youth engage in sex work to afford hormones or medical treatments, exposing themselves to the associated risks of HIV and other sexually transmitted infections.17,23,24 It is important to engage parents about their reasons for not providing consent, which may include moral objections to gender transition, concerns about the long-term safety of hormones and blockers, or the belief that their child may ultimately desist and regret their gender transition. The pediatrician can play an important role in providing information and reassuring parents about the reversibility of blockers as well as the potential harms averted (depression and suicidality) when these are initiated.

Youth in foster care have the same age restrictions for medical decision making. Because most youth in foster care are insured through Medicaid, there is the added complication that transition-related medical care may not be covered. In 2010, New York City’s foster care agency, the Administration for Children’s Services (ACS), implemented a policy for the provision of non–Medicaid-reimbursable treatment or services for youth in foster care. This policy included gender-affirming health care associated with gender identity disorder.25 Since this policy was implemented, at least three foster youth have been able to receive sexual reassignment surgeries through the ACS.

What Are The Medical Consequences Of Puberty Suppression?

There is extensive experience in the use of puberty blockers for treatment of precocious puberty that show they are well tolerated.26 When these agents are used for medical transition, there are additional positive effects on mental and physical health. Published studies show significant improvements in psychological functioning, such as less depression and fewer behavioral problems.7,14,18 In addition to the beneficial effects of suppressing the secondary sexual characteristics of the natal sex, there have been concerns about the impact of blockers on bone, fertility, and psychosocial function. During puberty, bone density increases; therefore, the use of puberty blockers halts this process. Adolescents taking puberty blockers will have lower bone density compared to their peers (lower z-scores) until treatment is stopped or cross-sex hormones are introduced, at which time bone density will normalize.27 Of greater concern is the effect on fertility. Implementing puberty suppression will prevent ovulation and spermatogenesis. Because many adolescents will proceed directly to cross-sex hormones or may eventually undergo gonadectomy, the effects on child-bearing potential need to be fully discussed, with options given for cryopreservation of sperm or ova before starting cross-sex hormones. If blockers are stopped without introduction of cross-sex hormones, fertility potential normalizes.

One of the remaining controversies concerns the age at which puberty suppression is initiated. Although the gender clinics in the Netherlands introduce puberty blockers at ages 12–16 years,14,18 the Endocrine Society calls for initiation at Tanner stages 2 to 3.5,6 This allows for youth who undergo puberty before age 12 to access blockers before irreversible pubertal changes occur. These blockers have been studied extensively in children with precocious puberty and have been shown to be safe and well tolerated in natal girls younger than 8 years and natal boys younger than 9,26 which should allay parental and physician fears about use in children younger than 12 years of age. However, the long-term use of blockers in gender-nonconforming children requires additional research surrounding both efficacy and safety.

What About Concurrent Mental Health Concerns?

Transgender youth, similar to sexual minority youth, may experience high rates of psychological distress.28 It is common for adolescents with gender dysphoria to have coexisting internalizing disorders such as anxiety and depression, and/or externalizing disorders such as oppositional defiant disorder.8,16 Transgender youth may face these challenges without support from family, friends, or school. Youth who disclose their gender identity are at high risk of rejection, which can lead to significantly increased risk of suicidality, depression, homelessness, incarceration, sex work, and substance use.16,28 The challenge is to determine what aspect of a patient’s mental health may be improved by addressing the gender dysphoria and how much is independent of gender identity. Additionally, clinicians may be concerned about the effect of psychoactive hormones on underlying mental health issues. So far, the literature has shown that psychological functioning usually improves when treatment for gender dysphoria occurs. Other mental health issues can present challenges to treatment. For example, some studies have found a higher prevalence of autism spectrum disorder among transgender youth; however, this does not appear to affect the ability to begin medical transition.14 Pediatricians can advocate for their young patients and encourage disclosure to parents and acceptance by families, with the goal to improve emotional well-being and health and reduction in harmful behaviors.29

Additional Questions

There are still remaining questions regarding the use of puberty blockers and cross-sex hormones. Will there be any long-term metabolic or neurocognitive consequences of hormonal manipulation? What are the long-term cancer and cardiovascular risks? Are the benefits and risks the same across different races and ethnicities? Should transgender women and men follow the same preventive guidelines as natal women and men? Although there are early data, for example, showing no increase in the rates of breast cancer in transgender persons,30 there are currently no evidence-based preventive guidelines that take into account an individual’s transgender experience. Much of the research on transgender youth has come out of Europe, and few studies have been conducted that reflect the ethnically and economically diverse U.S. patient populations.

Conclusion

Pediatricians and adolescent providers are often the first clinicians to encounter and evaluate transgender youth. They have a unique responsibility to educate families on the current standards of care and to have a clear understanding of the rationale for early intervention and the risks and benefits of medical transition. Primary care providers need to be aware of the common challenges and controversies regarding medical interventions and have the tools to advocate for their patients (Table 1).

Suggestions for Clinicians Caring for Youth Experiencing Gender Dysphoria

Table 1.

Suggestions for Clinicians Caring for Youth Experiencing Gender Dysphoria

Despite the challenges, the outlook is improving for transgender youth. For one, they are very resilient. Additionally, more institutions recognize the need for transgender-appropriate services and have implemented the necessary structural changes to create more welcoming spaces for transgender youth and facilitate access to care.

References

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Suggestions for Clinicians Caring for Youth Experiencing Gender Dysphoria

Be aware of current guidelines regarding transition-related care for transgender children and adolescents.

Refer children and adolescents with gender dysphoria to experienced professionals.

Be an advocate. Work with families, insurance companies, and schools to ensure that youth have access to appropriate gender-transition services.

Authors

Anita Radix, MD, MPH, FACP, is Director of Research and Education, Callen-Lorde Community Health Center. Manel Silva, MD, MPH, is Clinical Director, Health Outreach to Teens (HOTT), Callen-Lorde Community Health Center.

Address correspondence to: Anita Radix, MD, MPH, FACP, Callen-Lorde Community Health Center, 356 West 18th Street, New York, NY, 10011; email: aradix@callen-lorde.org.

Disclosure: The authors have no relevant financial relationships to disclose.

10.3928/00904481-20140522-10

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