Barrrera E. Ducar D. Out of the shadows: centering the “T” in LGBTQ+ Health Care. HPHR. 2021;35.
“Gender is not sex; it’s not attraction, it’s not orientation, it’s a piece of my identity.” Explaining the difference between sexuality and gender can often feel like a broken record in the realm of LGBTQ+ (lesbian, gay, bisexual, transgender, queer individuals or those with intersex traits) healthcare. Whereas gender is defined as an innate sense of oneself as male, female, a combination of both, or neither, sexual orientation describes who a person is attracted to, romantically, emotionally and/or sexually.1,2 As transgender and gender diverse (TGD) health inequity continues to garner interest, we as openly transgender individuals working in transgender health research and clinical care have become increasingly aware of confusion surrounding the differences between sexuality and gender.
The majority of Americans are first introduced to the TGD community as a part of the umbrella of the LGBTQ+ acronym, which is often used as a shorthand for cisgender sexual minority populations. This confusion among the general population is merited given how few people know someone who is TGD. A Pew Research poll from 2016 revealed that almost 9 in 10 respondents personally knew someone who was lesbian or gay (87%), as compared to less than 1 in 3 respondents reporting that they personally knew someone who is transgender (30%).3 Considering that the most recent survey data estimates the our community (TGD individuals) to be approximately 0.6% of the general U.S. population, the conflation between sexuality and gender easily percolates.4 Ideally, as positive TGD representation in the media continues to grow, so will awareness of the difference between gender and sexuality among the general population. However, this distinction is often lost in the realm of clinical research, clinical education, and clinical care, where the stakes for understanding the difference between sexuality and gender are often the highest. The roadmap to closing health disparities within our community requires a multifaceted approach tackling each of these areas. There are steps that can be taken on an individual, organizational, and systemic level to dismantle the unique barriers to appropriate, respectful healthcare faced by the TGD community.
Healthcare disparities continue to exist for all communities represented in the LGBTQ+ acronym, and improvements in healthcare, clinical education and research must continue in order to close all health equity gaps. However, sexual orientation and gender identity are distinct concepts and now more than ever, gender needs to be front and center in clinical education, research, and healthcare writ large. We advocate for the need to focus on gender diversity, to increase focus on the unique health care disparities of the many gender-diverse communities. This requires increased systemic investment in clinical research, clinical education, and clinical care.
Transgender people are disproportionately discriminated against and improving TGD health equity requires an approach that addresses both structural and interpersonal barriers. Recent reports indicate high levels of healthcare discrimination continue to persist. According to a 2020 report by the Center for American Progress, approximately 3 in 10 transgender respondents reported postponing or delaying medical care due to fears of discrimination, 1 in 3 reported having to teach their healthcare provider about transgender individuals in order to receive appropriate care, and half reported delaying medical care due to financial cost.5 The continued lack of appropriate training for clinicians, dearth of clinical research and sparse healthcare infrastructure currently available for TGD individuals is even more concerning given the disproportionate health risks within our communities.
Our communities are at a higher risk for poor health outcomes. Research indicates a substantially higher rate of chronic illness among the TGD population, in addition to greater physical and sexual violence, substance use disorders and earlier onset of disabilities compounding existing health issues.6,7 TGD populations also display higher rates of depression, chronic asthma and HIV diagnosis.8 In July of 2021, the American Heart Association released a scientific statement assessing the disproportionate levels of cardiovascular disease (CVD) and myocardial infarction (MI) among our communities. Although comprehensive data remain limited, a cross sectional analysis of self-reported survey data from the Behavioral Risk Factor Surveillance System (BRFSS) showed transgender men had a >2-fold and 4-fold increase in the prevalence of MI as compared to men who are cisgender and women who are cisgender.9 In regards to TGD individuals requiring estrogen for gender affirmation, data consistently show elevated risk of venous thromboembolism (VTE), with one retrospective chart study reporting 2- and 8-year risk differences of 4.1 and 16.7 per 1000 people relative to men who are cisgender and 3.4 and 13.7 relative to women who are cisgender.10 There are multiple factors contributing to the elevated risk of CVD, including food access, houselessness and economic insecurity, as well as higher prevalence of co-morbid health conditions.11
In addition to external factors, internal stress caused by stigma can also produce negative health outcomes. The Minority Stress Model (MSM), which posits that psychosocial factors related to experiencing internal, interpersonal, and structural discrimination all contribute to poorer health outcomes, also likely explains some of the increased risk.12 TGD people of color, especially Black TGD individuals, are particularly vulnerable to the negative impacts of the MSM due to experiencing a combination of racism and transphobia. This model highlights how stigma perpetuated in our society negatively impacts health outcomes and healthcare organizations and policy must invest in reducing bias to reduce transphobia and racism. Healthcare organizations must develop initiatives to foster internal and public awareness to highlight the resilience within the TGD population and change the narrative.13
Increasing investment in both healthcare infrastructure and awareness is necessary. This two-fold approach will address poor health outcomes and reduce the impact of stigma. Focusing on the TGD population now will help build a foundation for high-quality respectful healthcare in the future. Investment in infrastructure and awareness means additional resources for clinical research, clinical education, and clinical care. Tackling these areas will foster competence, reduce discrimination, lead to better data collection, enhance quality of research, and improve health outcomes.
Recent data are sparse regarding the current prevalence and breadth of sexual and gender minority (SGM) related content covered in medical school curricula in the U.S., but a 2018 survey of medical students revealed that although 92.7% of students felt comfortable or somewhat comfortable with caring for sexual minorities, 76.7% felt not competent or somewhat not competent caring for gender minorities.19 Although data are similarly sparse for nursing education, one study indicated that the majority of respondents currently in graduate nursing programs did not rate their LGBT health knowledge as high and did not feel equipped to educate their colleagues.20 Our medical educational system, and the next generation of clinicians, is not currently equipped to provide care for the TGD population. Not only is the current system failing the TGD community, the dearth of TGD health education fails learners by not equipping them with the skill set they need to care for all their future patients.
Currently there is no requirement for any SGM medical education, accreditation or graduate training, in accordance with the standards laid out by the Liaison Committee on Medical Education (LCME), Association of American Medical Colleges (AAMC), and Accreditation Council for Graduate Medical Education (ACGME).21 On average, baccalaureate nursing programs in the US only cover 2.12 hours of LGBTQ+ content over the course of an entire program.22 There is a lack of data available regarding graduate nursing programs, and more research is required to gain a better understanding of the barriers to implementation. A focus on TGD health disparities in clinical education by mandating SGM health topics are covered will improve the quality of clinical education.
For clinicians in training who have not had any prior experiences with SGM populations, it can be confusing to understand the core differences between sexuality and gender when they are presented alongside one another. In addition to understanding the our communities in isolation, teaching clinicians to care for TGD individuals requires clinicians to develop skills to deliver patient-centered care. Not only will TGD future patients receive respectful, humanizing care, but all their patients will reap the benefits of a provider equipped with the skills set to care for a patient population historically marginalized by the medical institution. Focusing on TGD health disparities will provide a clearer understanding of the unique needs of this population, encourage a patient-centered clinical skill set, and aid future healthcare workers in understanding the difference between gender and sexuality.
Ensuring clinicians have the resources they need to actively participate in closing TGD health disparities can start with enacting effective clinical guidelines focusing on TGD care.13 Expanding private and public coverage and increasing reimbursement rates of gender-affirming medical interventions like surgery and hormones will serve as an incentive to increase access to gender-affirming care. Revising policies that have both federal and state level components such as tethering Center for Medicaid and Medicare Services (CMS) reimbursement to clinical competence and outcomes may also increase quality of care. Improving coverage and bolstering financial incentives will expand access to higher quality gender-affirming care.
Clinical research efforts continue to garner more data, which serves to improve the foundation of evidence-based care. Given the continuous evolution of language, it is important for researchers to include TGD community members in decision making about manuscript language, study design and research questions. Researchers must carefully consider language when differentiating sexuality and gender, especially as it relates to collecting demographic data. In addition to understanding the difference between gender identity and sex assigned at birth, researchers cannot assume that all gender minorities must also identify as sexual minorities. Although a large percentage of the TGD population identify as a sexual minority, 15% of transgender respondents from the 2015 US Transgender Survey reported identifying as straight or heterosexual.23 Improving SGM demographic survey measures, especially within federal programs and studies, is integral to maintaining data accuracy and identifying health equity gaps.
The framework of community-based participatory research (CBPR) can aid in ensuring community engagement by improving communication between the TGD and research communities.24 CBPR emphasizes community stakeholders as equal partners working in collaboration with researchers. The expansion of CBPR in TGD health research by including TGD community members in the research process will help researchers to address evolving language, reduce bias, and build trust.
In addition to promoting community engagement through CBPR, we must focus greater investment in clinical research projects focusing on TGD health. Although calls continue for more clinical research focusing on sexual and gender minorities, institutional and financial support present major barriers for researchers.25 Funding for clinical research must increase for all sexual and gender minorities, but allowing researchers dedicated grants to focus in particular on the paucity of comprehensive longitudinal clinical research for the TGD population will have a significant impact on developing future guidelines for clinicians of all specialties.
There is a rich history reflected in the grouping of sexual and gender minorities and before cultural understanding of gender progressed, anyone who was not cisgender and/or heterosexual marched under the banner of gay liberation in the 1970’s as one.26 However, in the clinical sphere, the needs of the TGD population diverge from the needs of the cis-LGBQ population and have been neglected for too long. The necessary changes to be made will require an intent, singular focus on mending the deeply seated mistrust many TGD individuals hold for systems of healthcare that have failed them over and over. Addressing transphobia in our medical system necessitates a precise, razor focused approach, and longitudinal large-scale investment to improve the quality of healthcare available to the TGD population.
Critics of expanding TGD access to healthcare often cite the statistically percentage of the population that identifies as TGD, estimated to be around 0.6%, however aside from the reality that this number represents 1.4 million adults, there are resource-based arguments for directly addressing this population.4 Health disparities present undue financial burden through premature death, lost productivity and delayed care leading to more costly interventions. For example, one analysis found that eliminating racial health inequities would amount to $93 billion in savings on excess medical care.27 Although no similar analysis exists for the TGD population, ameliorating health disparities for this population would likely lead to cost efficient savings. Healthcare systems on a regional and national scale have a vested economic interest in promoting health equity through investing now in healthcare infrastructure to address health disparities faced by TGD.
Setting aside a fiscal lens, the availability of respectful, scientifically rigorous, and humanizing healthcare is a human right. There persists a lack of guidelines (especially on the long term effects of gender-affirming hormones), little standardization of care or education, and too many clinicians who continue to report feelings of incompetence when caring for TGD patients.19,16,25 The building blocks are not there for accessible, respectful, scientifically-evidenced healthcare, and unless drastic measures in the form of investment in better healthcare infrastructure and comprehensive reform to center the needs of TGD patients are taken, things are not likely to improve.
System wide changes are required to increase access to appropriate clinical care for TGD populations, from state-wide insurance policies, to billing codes, to medical educational standards. This can be done by funding gender-affirming cultural and clinical competence curricula in healthcare, investing in necessary research, expanding access to needed health services, measuring SGM data in federal programs and studies, and funding healthcare initiatives explicitly dedicated to this work. 28 Increasing systemic investment in clinical research, clinical education, and clinical care specifically for the TGD population will raise the quality of care that cisgender LGBQ+ patients, and all patients, receive by encouraging innovative healthcare centered on the patient.
The history of TGD discrimination and mistreatment in healthcare can end. We have an opportunity to leave young TGD people growing up today with a system that provides respectful, humanizing healthcare. A system where they won’t expect to be harassed, misgendered, assaulted or outright denied care. A system where clinicians have comprehensive data, guidelines, and educational tools to strive for excellence when caring for TGD patients. A system born out of reform, reflective of a society that protects those that are most vulnerable and focuses attention on closing gaps in health equity.
Ellis Barrera works in transgender healthcare research at the Boston Children’s Hospital Gender Multi-specialty Service (GeMS) Clinic. He is an advocate for the transgender and gender diverse community particularly in the realms of healthcare and athletics. He is hoping to achieve his dream of attending medical school!
Dallas Ducar is the Chief Executive Officer of Transhealth Northampton. Dallas is on faculty at Northeastern University, University of Virginia School of Medicine, University of Virginia School of Nursing, Columbia University, and the MGH Institute for Health Professions. She serves as the Vice-Chair of the Primary Care Alliance, is on the LGBTQI Federal Policy Roundtable, and advocates for gender-affirming care nationally. She serves on the Board of Directors for GLBTQ Legal Advocates and Defenders (GLAD) and of Healing Our Community Collaborative (HOCC). She has advised international research groups on best practices and has carried out community-based participatory action research programs. Dallas seeks to revolutionize healthcare, building novel systems to provide holistic, empowering, gender-affirming care.