Primary and Preventative Care for Transgender Patients

Introduction

Primary care clinicians can learn the skills to provide high-quality, affirming medical care to transgender patients the same way they learn to care for other patients with specific health needs. Clinicians may choose to provide the full spectrum of transition-related medical care, including hormonal therapy and pubertal blockers, or offer only primary care services. Regardless of scope, competency in care for transgender people is essential in our changing world. This skill set requires knowledge about barriers to care, steps for creating a trans-affirming office environment, cultural competency, medical treatment options for transition-related care, and an understanding for how medical transitions impact routine primary care. Most primary care providers are trained within a biopsychosocial framework—meaning that one’s health is considered in the context of mind, body, family, work, and culture. This holistic approach is particularly well suited for transgender patients, who may have complex medical and social concerns. In this chapter, we will review basic competencies and strategies for incorporating transgender health into primary care practice.

Barriers to Care

Transgender and gender nonconforming people face relentless discrimination in employment, family life, education, housing, and public accommodation, but some of the most appalling discrimination occurs when these individuals reach out for help—in health-care settings. Transgender people have well-defined health needs but, for many reasons, are often unable to access appropriate medical care. A recent survey of 27,715 transgender people across the United States shows minimal gains in access to health care for transgender people compared with data from 2010. Twenty-five percent of those surveyed experienced a problem in the last year regarding their insurance, 33% who saw a health-care provider reported at least one negative experience related to being transgender, 55% of those who sought coverage for transition-related surgery were denied, and 23% of respondents did not see a doctor when they needed to because of fear of maltreatment. Provider-based barriers to care include lack of training or experience with transgender health issues, paucity of evidence-based data to guide therapy, personal discomfort, religious or cultural prohibitions, ethical concerns, fear of complications, fear of litigation, and reluctance to prescribe medications for off-label indications. Patient-based barriers include stigma, lack of adequate insurance coverage, coming-out issues (e.g. fear of violence, rejection, ambivalence), financial problems, mistrust of the medical establishment, absence of knowledgeable providers, and inability to present for sustained monitoring and follow up due to lifestyle issues.

The lack of quality epidemiologic studies creates a significant barrier to care. Uncounted, the size of the transgender population remains unknown, and we are unable to inform public policy or allocate resources. Lesbian, gay, bisexual and transgender (LGBT) people are referred to as a hidden minority, as sexual orientation and gender identity are not readily apparent and patients may be reluctant to reveal themselves to clinicians. Thirty-one percent of transgender people are not out to any of their health-care providers. Most existing epidemiologic studies are flawed by conflicting definitions of what it means to be transgender and only those who seek treatment at gender clinics are accounted for in these studies. One population-based survey reported a 0.5% rate of individuals who self-identified as transgender, indicating a relatively high prevalence. Conway estimates that 0.5% to 2% of the general population have feelings of being transgender and 0.1% to 0.5% have taken steps to transition. As societal norms have changed, gender clinics across the country are reporting increased numbers of patients requesting services, but the ability to find primary care services remains low. Transgender people will remain underserved unless proper epidemiologic studies define the scope of the population.

Intrapersonal and interpersonal stigma presents another barrier to care for transgender people. The concept of minority stress is used to describe the health effects of stigmatization. Makadon outlines the causes of minority stress as “(a) an external, objective traumatic event, such as being assaulted or fired from a job; (b) the expectation of rejection and development of vigilance in interactions with others; (c) the internalization of negative societal attitudes; and (d) the concealment of gender identity or sexual orientation out of shame or guilt or to protect oneself from harm.” The concept of intersectionality demonstrates how individuals hold multiple identities, defined in terms of relative sociocultural power and privilege, which shape their experience with stigma. Differences in power and privilege associated with these identities ensure that an unemployed transgender woman of color will have a different experience attempting to access health care than a wealthy, white, transgender man.

Stigma has a direct effect on health. In one study, sexual minorities who lived in communities with high levels of anti-gay prejudice had a higher hazard of morbidity, an 18-year difference in the average age of completed suicide, and a 12-year shorter life expectancy. Transgender patients have increased rates of substance abuse, psychiatric illness, unemployment, HIV infection, and homelessness, which adds stigma to this population and increases the difficulty of accessing or sustaining medical care. Training in cultural competency, while essential, fails to address the larger health-care disparities created by institutionalized sources of stigma which result from cultural, economic, and political conditions.

Traditionally, LGBT health issues receive scant attention in medical training programs. In a survey of 176 medical schools, students received an average of 5 hours of LGBT health training over 4 years. Most medical students receive minimal training on taking a sexual history, leaving them uneasy and unprepared to handle the diversity of human sexual experience. When trainings on LGBT health topics are offered, medical students agree they are relevant to their future work as physicians. Unless the next generation of clinicians receives focused training on the specific health needs, transgender patients will continue to have difficulty accessing clinically and culturally competent care. The resulting “informational and institutional erasure” will lead to ongoing alienation and distrust of medical systems, with a devastating effect on health.

The paucity of evidence-based treatment guidelines, studies on the long-term safety of gender-affirming hormone therapy (GAHT), and guidance for complex medical cases also leads to barriers to care. Few studies exist to define the long-term risks of treatment with GAHT. LGBT people have been explicitly excluded from some clinical trials, particularly those related to sexual function. Pathologists and laboratory professionals lack guidelines on how to interpret surgical and cytologic specimens from transgender people, and norms for lab data are based on binary gender definitions. Use of GAHT or pubertal blocking medications for the treatment of gender dysphoria is not FDA approved, which may make clinicians reluctant to prescribe, or fearful of litigation. Over the last decade, a number of professional organizations have released comprehensive treatment guidelines, but recommendations are based on expert opinion, as evidence-based data are lacking. Clinicians who encounter complex biomedical cases may struggle without evidence-based guidance. Further clinical based research is needed to support informed medical decision-making in the office setting.

Problems with insurance coverage present significant barriers to care. Fourteen percent of transgender people are uninsured, and one in four reported problems related to insurance due to being transgender. These problems included refusal by insurance companies to change name and gender when requested (17%), denial of coverage for gender-specific services such as Papanicolaou (Pap) smears or mammograms (13%), and denial of coverage for routine care (7%), transition-related surgery (55%), and hormone therapy (25%). Many policies deny coverage for transition-related care, which has a disproportionate impact on the social, economic, legal, political, medical, and mental health of low income transgender communities and people of color.

Over the last few years, attention to transgender people in the media has reached a tipping point, with an increase in the coverage of their personal stories, societal issues, and governmental interventions. As a result, public debate around the rights of transgender people has swelled, with opponents pitted against proponents from the corridors of public schools all the way to the supreme court. The news is full of stories about bathroom bills and gender-based bullying. Hate groups masquerading as professional organizations publish their own recommendations for care, which are read by vulnerable parents and providers. Religious groups also contribute to the national debate, speaking out in favor or against affirming one’s gender identity. Although trained to evaluate the medical literature, providers, medical ethics committee members, and hospital administrators are all products of the same culture and bring implicit bias to exam and board rooms.

These many barriers to care arise as transgender people attempt to negotiate the medical system. Will the office staff treat me badly? Will my insurance cover my care? Will the doctor understand who I am, what I need? Is it worth the effort to try to get care?

Removing Barriers to Care: Creating Trans-Affirming Medical Environments

Hospitals and outpatient clinics can intentionally address barriers to care and create welcoming and inclusive patient-centered medical systems. Steps involve choosing a model for care, constructing appropriate visual cues, providing cultural competency training, capturing appropriate demographic information, updating policies and procedures, and learning to provide clinically appropriate services.

Intentional provision of care for LGBT patients usually employs one of two models: LGBT-specific care delivery (a clinic designed to serve this population), or LGBT-embedded care delivery (inclusive services offered within a general ambulatory care practice). In large cities, LGBT-specific clinics are often Federally Qualified Health Centers in neighborhoods with a high proportion of LGBT individuals. They usually advertise well, offer a sense of community and expertise regarding LGBT health concerns, and hire staff who are committed to serving this population. In the LGBT-embedded care delivery model, services are provided within the context of a general ambulatory practice. These types of practices vary from site to site in the scope of services offered and expertise of providers. They offer anonymity to patients who prefer not to self-identify, can be established in communities with smaller LGBT patient populations, and may be able to offer more general medical services.

The creation of welcoming environments includes attention to on-site physical structures and visual cues. Welcoming signs and trans-inclusive literature in the waiting room will signal that patients can be open with staff and providers. Gender neutral bathrooms should be installed and properly labeled. Anti-discrimination policies should be prominently displayed. Health centers can identify themselves as LGBT-affirming in hospital directories and marketing campaigns.

Staff should be trained to recognize and address the common problems transgender patients face around insurance coverage. Staff must learn how to bill for gender specific services, such as Pap smears for transgender men and prostate screening for transgender women. Clinicians can request appeals when insurance companies insist that patients conform to outdated standards of care. Patient navigators can direct patients toward policies with inclusive coverage, and advocate for patients who are denied services. Providers should familiarize themselves with local legal or insurance advocacy organizations to assist, when necessary.

Electronic medical records have traditionally offered a binary system for capture of demographic information, missing the opportunity to describe and measure data on sexual and gender minorities (SGM). The Institute of Medicine, under the auspices of the National Institutes of Health (NIH), now recommends routine capture of sexual orientation and gender identity data in all medical records. The Department of Health and Human Services (HHS) has included sexual orientation and gender identity data collection in its requirements for Electronic Health Records certified by Meaningful Use. Health centers that capture this data will be able to identify and target regional health inequities.

Cultural competency training for staff is essential to creating welcoming and inclusive environments. Training should cover explicit and implicit bias, trans-affirming language, behaviors, and interviewing techniques. Staff and providers are usually unaware of the implicit bias they have absorbed from their cultures. Most healthcare personnel pride themselves on being “accepting of everyone,” but true understanding of the lives of those different from ourselves includes acknowledgement of the institutionalized racism, sexism, genderism, ableism, and classism that is an integral part of our culture. These concepts are challenging to address in short cultural competency trainings, and require a willingness on the part of trainees for honest self-assessment. Explicit bias, in the form of racist, transphobic, or homophobic remarks or actions, are easier to identify, but may be equally challenging to address, particularly in clinics with embedded care delivery models, where staff were not necessarily recruited for their commitment to LGBT patients. Culturally competent care includes the recognition that each patient has a unique journey, with differing goals, timelines, and ability/willingness to disclose. Clinicians must learn how to involve family members in the transition process, when appropriate, or support patients who are rejected by family. They must also be aware of the challenges many transgender people face around housing, education, employment, and societal stigma.

Attention to trans-affirming language is an essential part of cultural competency training. Individuals present with an increasing number of terms for self-identification. All office staff must be comfortable asking patients their preferred name and pronouns, and familiar with the common names for identities that fall under the transgender umbrella. They must be comfortable with the concepts of sex assigned at birth, gender expression, and sexual orientation, and understand that patient experience may be fluid. Training manuals are available with teaching tools and lists of definitions, as well as pictorial representations, such as the widely used “genderbread person.” Clinicians should learn the terms transgender people use to describe common practices, such as “packing” (wearing genital prosthesis), “tucking” (hiding the penis and testicles), and “binding” (wearing compressive chest garments).

Clinical competency is essential to creating a welcoming environment, and a holistic, biopsychosocial approach to care works best. Clinicians should learn to recognize the health-care disparities faced by transgender people of different ethnicities, race, ability, literacy, and socioeconomic status. They should familiarize themselves with common health problems, hormone treatment protocols, and primary care protocols for transgender people. They must learn to take accurate sexual histories, and assess for high risk behaviors and substance abuse. They must develop skills in assessing psychosocial stressors, which includes knowing to ask about common legal, spiritual, social, and emotional problems. Clinicians can partner with mental health providers, creating a therapeutic team to assist struggling patients. Professional medical education programs are available for providers who wish to develop these skills.

Clinicians and staff should be aware of transgender-specific community resources and post this information in waiting rooms or on websites, or distribute it via handouts. Patients benefit from access to support groups, pride centers, legal advocacy centers, affirming places of worship, and other social services. Clinicians can also refer patients to legal groups who assist with changing gender markers on documents. We recommend developing close connections to legal organizations that represent transgender people who face discrimination, such as the America Civil Liberties Union, Lambda Legal, the Transgender Legal Defense and Education Fund, and the National Center for Lesbian Rights.

Patient feedback is important to assess the effectiveness of efforts to create welcoming and inclusive spaces. Patients can be asked to participate in focus groups or community advisory boards to comment on their healthcare experience and make recommendations for improvement. Patient satisfaction surveys should include specific questions regarding the experience of transgender patients within the healthcare system.

The US Department of Health and Human Services (HHS) has taken significant steps to advance the health of LGBT communities by implementing article 1557 of the Affordable Care Act, which prohibits discrimination in health care on the basis of sexual orientation and gender identity. The NIH has officially designated SGM as a health disparity population for research, and a new position for a Senior Advisor for LGBT Health has been created within the Office of the Assistant Secretary for Health (OASH). As a result, new services are being evaluated and developed at the federal and state level. The Healthcare Equality Index/Human Rights Campaign offers an online benchmarking tool to assist institutions as they update these policies and then advertise best practices in LGBT health to their community. The first step to reducing barriers to care is to ensure that LGBTQ health care is valued as part of an organization’s commitment to quality.

Principles of Primary Care for Gender Nonconforming and Transgender Patients

Gender-Affirming Hormone Therapy: Basics for the Primary Care Clinician

Hormonal therapy is highly effective in enhancing psychological well-being for transgender people. Quality of life is enhanced, and symptoms of depression, anxiety, body discomfort, and psychopathology are reduced. All primary care clinicians should have a basic understanding of hormonal therapy. Gender-affirming hormone therapy is considered medically necessary, and is the standard of care for the treatment of gender dysphoria. We will provide a brief overview of masculinizing and feminizing hormones, and discuss the metabolic effects of these medications ( Table 12.1 ). The Endocrine Society recommends initiation of hormone therapy at age 16 or older. Parental consent is required until age 18. Most experts advocate for flexibility around the age for prescribing hormones, and may start hormones before age 16, for youth who meet criteria for gender dysphoria.