Inclusivity Is Paramount for Efficacious and Equitable Neurological Care of Transgender Patients

“The idea of inclusive care actually came from the disability justice movement,” explained Nicole Rosendale, MD, assistant professor of neurology at the University of California San Francisco Weill Institute for Neurosciences and San Francisco General Hospital. “It’s the idea that care is efficacious, so that it produces what we want it to produce, as well as equitable, and that means that services are provided based on what people need and not their position and/or positioning by society.”

Rosendale kicked off the session “Neurologic Conditions in Transgender Patients” on Sunday, April 23, at the American Academy of Neurology 2023 annual meeting by providing background that encompassed terminology and concepts relevant to the care of transgender and gender-diverse individuals and best practices for optimizing neurologic care in this patient population.

Inclusive care is inextricably intertwined with affirming care, or health care that attends to not only the physical well-being of transgender and gender-diverse individuals, but also their mental and social health care needs while respectfully affirming their gender identity. The end goal is health equity and attaining the highest level of health for everyone while continuing to focus on addressing avoidable inequities and injustices and eliminating health and health care disparities, Rosendale emphasized, before handing off the discussion to Gwen Zeigler, DO, a neurologist at Utah Valley Hospital with Intermountain Health, a transgender activist, and a founding member of the Gender Equity Working Group of the LGBTQIA section of the American Academy of Neurology.

Zeigler discussed gender-affirming hormone therapy (GAHT), headaches, epilepsy, and how to help reduce medical avoidance within the transgender and gender-diverse community and thereby improve care overall.

“Gender-affirming hormone therapy affects someone’s secondary sex characteristics to align with their gender identity,” she stated, “either with medically inducing puberty, if you will, or blocking the default puberty.”

Transmasculine GAHT primarily encompasses testosterone as the primary therapy; finasteride, a 5α-reductase inhibitor that blocks the conversion of testosterone to dihydrotestosterone, the stronger form of testosterone in the body,¹ that is often used to prevent hair loss; gonadotropin-releasing hormone (GnRH) agonists, which are used to suppress pubertal-related changes²; and period blockers. Transfeminine GAHT typically includes estrogen in the form of estradiol; progesterone to enhance estradiol’s effects³; spironolactone, an androgen receptor antagonist that reduces testosterone levels and in turn can reduce the needed estrogen dose, which has the added effect of reducing neurological adverse effects; finasteride; and GnRH agonists.

Zeigler then used case studies to shape her discussion of neurological care in the transgender and gender-diverse community.

The first case involved a 19-year-old woman assigned male at birth who presented with intractable headaches with hours-long unilateral throbbing, light sensitivity, nausea, dizziness, and exacerbation with movement. She had a family history of migraines; was being treated by another neurologist with topiramate, which is used for epilepsy and migraine, and amitriptyline and zolmitriptan, both also used to treat migraines and their symptoms; and was receiving oral estradiol and spironolactone for GAHT.^4-6

When addressing and treating headaches in the transgender and gender-diverse community, important neurological considerations for evaluating and treating headache, as illustrated by this case study, are medication-GAHT interactions; increased risks of idiopathic intracranial hypertension, cerebral sinus venous thrombosis (CSVT), and brain tumors; and increased headache frequency and disability.

There should be a lower threshold when thinking of secondary headaches, Zeigler noted, especially with GAHT, because these patients have increased risks of triple-sized thromboses, stroke, and venous thromboembolism. In addition, long-term estrogen therapy has been linked to a greater risk of CSVT.

“Everything we do as clinicians involves weighing the benefits and the risks, and it’s important that we try to be as accurate as possible, as well as consider our own biases,” Zeigler emphasized. “It’s good to try and avoid the interactions if possible and good to coordinate with the physician in charge of the gender hormone therapy.”

Further research is needed, however, because evidence is very limited on the effects of GAHT on headaches, even with research showing migraine and migraine disability have potential links to trauma and discrimination in sexual and gender-minority individuals.⁷ 

Because this patient also presented with signs of epilepsy, it’s important to understand the effects that estrogen and progesterone can have on that condition’s neurological outcomes. Estrogen, for example, is known to exhibit proconvulsive properties in some patients, so dose reduction is an important consideration in the context of epilepsy, while progesterone has a metabolite that is a neurosteroid that has anticonvulsant properties. A third consideration involves potential use of medroxyprogesterone, a synthetic form of progestin, but this does not offer the same protection as natural or micronized progesterone.

“So, if in the midst of trying to control the seizures, one of the things you’re considering is recommending progesterone to help control the seizures, medroxyprogesterone may not be your best player,” Zeigler stated.

She then addressed health care avoidance among transgender and gender-diverse individuals, noting that primary reasons community members give for avoiding health care have to do with body changes and imposed shame, attempts to change their gender identity that they feel have proved futile, experience in health care and biases from health care providers, potential career consequences, and gender dysphoria and euphoria.

Barriers to initiating access to care within the transgender and gender-diverse communities also include unemployment and homelessness, which often are connected, and discrimination, in the form of uncertainty, avoidance, and legislative barriers. Data that Zeigler quoted from 2015 show that 22.8% of transgender individuals avoided health care because of the anticipated discrimination.⁸

What can be done, she asked: Is it enough to signal affirmation without having the cultural knowledge and humility? Is it enough to publicly display or discuss how complicated an issue it would be for transgender and gender-diverse people to be given full rights and dignity? Or is the best way to signal safety by demonstrating an affirming environment that is fully backed with cultural knowledge and humility?

Make your setting and yourself a safe environment, Zeigler continuously emphasized.

“Research on transgender and gender-diverse patients is lacking and greatly needed, and cultural humility, knowledge, and affirming environments are critical to the care of transgender and gender-diverse populations,” she concluded. “The field and the community benefits.”

References

1. What are finasteride and duasteride? Plume. January 6, 2023. Accessed April 23, 2023. https://getplume.co/blog/what-are-finasteride-and-dutasteride/

2. Pubertal blockers for transgender and gender-diverse youth. Mayo Clinic. June 18, 2022. Accessed April 23, 2023. https://www.mayoclinic.org/diseases-conditions/gender-dysphoria/in-depth/pubertal-blockers/art-20459075

3. Prior JC. Progesterone is important for transgender women's therapy-applying evidence for the benefits of progesterone in ciswomen. J Clin Endocrinol Metab. 2019;104(4):1181-1186. doi:10.1210/jc.2018-01777

4. Fariba KA, Saadabadi A. Topiramate. National Library of Medicine. Updated January 31, 2023. Accessed April 23, 2023. https://www.ncbi.nlm.nih.gov/books/NBK554530/

5. Amitriptyline for pain. ProHealth Clinic. May 5, 2022. Accessed April 23, 2023. https://prohealthclinic.co.uk/blog/amitriptyline-for-pain-frequently-asked-questions/

6. Zolmitriptan. Medline Plus. Updated January 15, 2022. Accessed April 23, 2023. https://medlineplus.gov/druginfo/meds/a601129.html

7. Rosendale N, Guterman EL, Obedin-Maliver J, et al. Migraine, migraine disability, trauma, and discrimination in sexual and gender minority individuals. Neurology. 2022;99(14):e1549-e1559. doi:10.1212/WNL.0000000000200941

8. James SE, Herman JL, Rankin S, Keisling M, Mottet L, Anafi M. The report of the 2015 US transgender survey. National Center for Transgender Equality. December 2016. Accessed April 23, 2023. https://transequality.org/sites/default/files/docs/usts/USTS-Full-Report-Dec17.pdf