Inclusion of Historically Oppressed Genders in Neurologic Practice Research

In this issue of Neurology® Clinical Practice, Qureshi et al.¹ present a case of a transgender man of childbearing age with a reported body mass index of 37 who presents with idiopathic intracranial hypertension (IIH). The authors conclude that exogenous testosterone as part of a gender-affirming hormone regimen may be a potential mechanism for his diagnosis of IIH, based on prior evidence that disorders in androgen metabolism may influence CSF production.² The authors additionally report multiple similar case reports in the literature of transmasculine patients with IIH.

In recent years, the number of articles on historically oppressed genders unrelated to HIV infection has been increasing in the neurologic literature.³ There is some evidence that stroke risk is higher in the transfeminine community compared with their cisgender counterparts.⁴ This finding may possibly be associated with the use of gender-affirming hormones.⁴ However, these studies are limited by multiple methodologic issues, and because of systemic barriers, there are higher rates of confounding stroke risk factors in transgender patients.⁴ There are other considerations when treating patients on gender-affirming hormone therapy, including potential changes in the frequency of migraine headaches and serum levels of seizure medications.⁵

We applaud the authors for the manuscript's use of affirming language in the case description. This is particularly noteworthy in comparison with the broader literature, which often uses culturally insensitive terminology, even at the date of publication (Table). However, as described below we wish to caution readers that the case report by Qureshi et al. may still contain unintended implicit bias, and we should be cautious in concluding that the diagnosis of IIH is related to the use of testosterone.

First, the patient's transgender identity is irrelevant to his original diagnosis of IIH, which was discovered before the initiation of exogenous testosterone. At the time of IIH recurrence, the patient's testosterone dosage was similar to androgen therapy for hypogonadal cisgender men, and his serum testosterone levels were low to within the range as compared to cisgender men.⁶ Therefore, there is no evidence of androgen imbalance in this patient. Furthermore, androgen excess is not fully explanatory as the mechanism for IIH because IIH has been observed in transgender women and cisgender men with low testosterone levels.^7,8 There have been no known reports of nonbinary or intersex patients with IIH.

Second, there is a confounding factor of obesity in this patient, which is a well-known risk factor for IIH. Over 90% of patients with IIH are obese, and the risk of IIH increases directly with body mass index.^2,7 This association is especially important to note with transgender patients, in whom disordered eating is prevalent as a maladaptive coping mechanism to systemic minority stressors.⁹ All reported body mass indices in publications on transgender patients with IIH are above the accepted “healthy” range.¹⁰

Last, the use of transgender community members to investigate disease mechanisms may not be necessary and could lead to potentially harmful clinical implications if the results are misinterpreted. Cisgender persons live with varying endogenous testosterone levels and can alternatively be used for the study of androgen imbalance and IIH pathogenesis. Furthermore, the association of gender-affirming hormone treatment with IIH may result in hormone prescribers stopping their patients' hormone therapy, which is not benign. Gender-affirming hormones improve mental health outcomes and are life saving for many transgender people.¹¹ Decisions to stop gender-affirming hormones should be made in conjunction with patients along with full informed consent of the risks and benefits of doing so. There exist reports of obese transgender patients who achieved remission from IIH and safely continued their gender-affirming hormones.¹²

These issues highlight several important needs within academic neurology. First, there is a lack of transgender, nonbinary, and intersex representation in our clinical research. The inclusion of gender-nonconforming patients is clinically important because many choose to undergo varying degrees of medical transition, including microdosing of hormones or none at all. Second, there is a lack of medical education for transgender health care and cultural sensitivity in our training requirements. Third, there is a lack of implicit bias and social impact review of our original research and publications. These issues are structurally longstanding and indicate an ongoing problem with quality assurance and cultural bias in our institutions and profession.

Solutions to these issues should be intersectional, prioritized, and systemic. Neurologists should champion equity as an outcome and promote collective liberation of our patients and colleagues who identify as members of historically oppressed communities. We should publicly advocate for favorable new laws, practices, and policies for our patients and colleagues from historically oppressed communities. Academic wage scales should be transparent and equalized. Training on culturally sensitive health care and social justice should be required and included in professional licensing and credentialing examinations. Accountability and compliance to Inclusion, Diversity, Equity, Anti-racism, and Social Justice initiatives should be publicly reported. We should bidirectionally engage and collaborate with external stakeholders from other professions, including allied health professionals and community thought leaders. Community-Based Participatory Action Research should be taught and practiced in our academic institutions. Positionality should be included as relevant disclosures. We should pay and give appropriate credit to representatives from the affected communities involved in our research. We should recruit, develop, and mentor talented individuals from historically oppressed communities. More funding should be made available for clinical care and research involving historically oppressed communities, and transgender and nonbinary identities should be included as underrepresented minorities in medicine.

This case report highlights the possible role of gender-affirming hormones in neurologic practice; however, careful evaluation is needed to not overestimate the risk of gender-affirming hormone therapy in light of the many known benefits. Ethical representation of gender minorities and inclusion of culturally sensitive language are important in neurologic clinical practice and research.

Appendix Authors

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