Abstract
Healthcare advocacy is the duty and privilege of all healthcare providers, but especially for those who care for children. Intersex and gender diverse youth face significant barriers across many aspects of life, with access to competent gender affirming healthcare chief among them. Understanding the importance of both institutional and individual efforts in healthcare advocacy is paramount to improving healthcare access and outcomes for this population.
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“Each time a [person] stands up for an ideal or acts to improve the lot of others or strikes out against injustice, [they send] forth a tiny ripple of hope.”
- Robert F. Kennedy. 1966 Day of Affirmation Address, University of Capetown; Capetown, Africa
Health advocacy is comprised of efforts to ensure access to equitable care and resources, guide policy, and support system change. It requires an understanding not only of the provision of healthcare, but also of the economic, social, and political landscape in which such care is delivered [1, 2]. Uniquely positioned and qualified to advocate for improvements in systems of health, there have been increasing appeals to physicians to engage publicly on behalf of their patients [3,4,5,6]. Many feel this is of great importance in pediatric medicine, where individuals who cannot vote require an “evidence-base and a personal understanding of [their] lived experience and healthcare needs…not driven by popular or political will” [1]. This is never truer than for children from marginalized communities.
The transgender and gender diverse (TGD) communities face significant bias, often experiencing mistreatment, violence, and discrimination throughout every aspect of life [7]. The downstream effects cannot be overstated, resulting in worse economic, social, and healthcare outcomes across a spectrum of parameters [7, 8]. In a 2015 survey of the TGD community in the US, the largest of its kind to date, greater than half (54%) of those perceived as being transgender during elementary and secondary school years had been verbally harassed at school on the basis of their gender identity or expression; nearly one quarter (24%) had been physically attacked and 13% had been sexually assaulted [7]. The unemployment rate of those surveyed was reported as being nearly 15%—3 times the rate of the general United States population—while nearly 1/3 surveyed (29%) live in poverty, over twice the rate of the general United States population (12%).
Healthcare implications were similarly dire, with a third of respondents (33%) reporting at least one negative experience at the hands of healthcare professionals, ranging from verbal harassment to refusal of treatment, leading many to avoid care [7]. Alarming rates of psychological distress were reported, with almost 40% of respondents attempting suicide in their lifetime—a figure greater than 8 times the rate of the United States population; it is worth noting that many of these numbers were even higher for gender diverse people of color [7, 8].
While the needs of intersex patients and patients with differences in sexual development (I/DSD) have perhaps been less politicized, they remain fraught; the historical practice of medically intervening to “normalize” intersex bodies to fit a binary gender system has resulted in systematic oppression, discrimination, social isolation, and human rights violations [9,10,11,12].
The history of gender diversity is challenging to study, in part a function of a relatively new and emerging vocabulary (the term transgender was coined in the twentieth century) as well as the historical conflation of sexual orientation and gender identity [13]. However, gender fluidity of the human race is documented throughout history [14]. Indeed, descriptions of gender beyond a binary system can be found dating back millennia: there are examples throughout Greek and Roman mythology [15, 16] and in several Indigenous North American and Polynesian tribes, in which other or third genders are recognized [15, 17, 18]. It is evident that “the expression of gender characteristics, including identities that are not stereotypically associated with one’s sex assigned at birth, is a common and a culturally diverse human phenomenon that should not be seen as inherently negative or pathological [19].”
Today 1.8% of US children and adolescents identify as TGD, with a similar number reporting as intersex [20, 21]. Unfortunately, recent efforts to politicize the needs of TGD patients endeavor to limit access to gender affirming and culturally competent care. These efforts, often based on “misunderstandings and mischaracterizations of the field’s standards of care, clinical best practices and scientific research base [22],” greatly undermine patient bodily sovereignty, healthcare autonomy, and the sanctity of the physician–patient relationship [22,23,24]. According to the American Civil Liberties Union, as of this writing, 19 states have passed laws restricting access to gender affirming care and many other state legislatures have introduced bills with similar proposed restrictions [20, 25]. These actions have been taken despite vehement opposition from numerous national and international medical and professional organizations, including The American Medical Association, The American College of Physicians, The American Academy of Pediatrics, The Pediatric Endocrine Society, The American Academy of Child & Adolescent Psychiatry, USPATH, and WPATH (United States and World Professional Associations for Transgender Health, respectively), to name just a few [20, 23, 24]. Such legislation, while ostensibly proposed to “protect” children, instead restricts gender diverse patients from receiving best-practice medical care, as established by evidenced-based medicine and learned professional societies. Furthermore, these bills often “propagate a range of factual inaccuracies about transgender youth. Alabama [House Bill 1], for example, falsely asserted that gender-affirming medical interventions increase risk of mental illness and suicide, despite research showing that access to these interventions is associated with improved mental health outcomes [20].” The result is frank harm to these patients and, in some cases, criminalization of established best-practices and the physician as fiduciary [20, 22, 24, 26,27,28,29].
As pediatric providers, we have a moral, medical, and, in many cases, legal imperative to advocate for the rights and well-being of all children, including I/DSD and TGD youth [30]. While reasonable practitioners as a group may not universally agree on what represents the best pathway of care for all of these patients, we must all agree on the importance of providing autonomy to patients and families in their own medical decision-making, and of recognizing our patients’ basic human dignity. Available data confirms that TGD patients regularly endure negative healthcare experiences. This occurs even in our own departments: over 70% of patients in one recent survey of TGD experiences in radiology reported at least one negative imaging encounter, while 24% reported 6 or more [7, 8, 31, 32]. These included not being asked about their chosen pronouns or name, feeling a general sense of discomfort from providers and staff, and being repeatedly misgendered in personal communications or in the radiology report [31]. These data are alarming, but they are not insurmountable. Practical changes to our hospitals, our departments, and even our personal practices can contribute significantly to improving care for our gender diverse patients [31, 33].
Many straightforward steps can be taken to create an inclusive and welcoming environment for gender diverse patients and can be implemented in a variety of settings and departments [32, 34]. These may include adding affirming signage to public spaces and facilities; educating staff and practitioners in healthcare disparities and basic gender literacy; ensuring the electronic medical record (EMR) readily records and displays gender identity, pronouns, and chosen names; and creating inclusive intake and screening forms [35]. Partnering with executive leadership, as well as local and national organizations, can further facilitate making necessary changes within an organization. Groups such as the American Civil Liberties Union, Genderdiversity.org, and the Human Rights Campaign provide many resources for practitioners looking to advance LGTBQ + equality. Additionally, a downloadable toolkit has recently been published that provides specific, practicable, and actionable steps that we as pediatric radiologists can take to effect change in our practices and institutions to further guide these efforts [36].
Unfortunately, the practicality of achieving meaningful structural change in our practices and hospitals is heavily influenced by the current political landscape of each locality. Accordingly, we may find that certain types of change are not currently achievable in a given vicinity or practice environment. Healthcare advocacy in the form of political advocacy at the national, state, and local levels may represent a necessary first step to reclaim medical care oversight for I/DSD and TGD youth from the political realm but may be beyond the scope or expertise of any single practitioner.
In the face of this reality, it is crucial to remember that for many of these patients, a majority of their experiences with radiology departments, practices, and providers are likely to be unrelated to medical issues specific to their gender identity. We, as physicians and providers, hold the power to both enable and provide positive and affirming patient interactions at the individual level for these patients [37]. Recalling the staggering rates of negative health outcomes in this population tied to circumstances in which they lack support and affirmation in a variety of settings, our ability to provide kindness to, and recognition of, these youth likely represents our greatest opportunity to support their health and wellbeing. Simple efforts, such as using a patient’s chosen name and pronouns, require little in the way of operational change and yet have been shown to have significant downstream positive effects on our patients [33]. Ultimately, we must remember that we are never stripped of our own personal agency, nor of our ability to practice health advocacy at this most basic and human level; to do so is both our privilege and our duty.
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Menashe, S.J., Zavaletta, V., McCoy, M.N. et al. Advocacy in gender affirming care. Pediatr Radiol 54, 1391–1394 (2024). https://doi.org/10.1007/s00247-024-05885-w
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DOI: https://doi.org/10.1007/s00247-024-05885-w