Rating: Transsupportive, Scientific American, November 17, 2023 (PDF archive) (HTML archive) (Take Action)
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NOVEMBER 17, 2023
5 MIN READ
Transgender People’s Neurological Needs Are Being Overlooked
Migraine, stroke and epilepsy disproportionately affect members of the transgender community—but neurologists are often unprepared to respond
Neurology
As a transgender neurologist, I advocate for the improved health care of other transgender people. I present my research findings to professional organizations and medical colleges throughout the U.S. While doing so, the most frequent criticism I receive from neurologists is: “What does being transgender have to do with neurology, the branch of medicine focused on the nervous system?”
I understand their confusion. The American Board of Psychiatry and Neurology, which certifies neurologists in clinical competency, has no required curriculum on transgender health care. Therefore, it may not be surprising that a 2019 survey reported that nearly half of the American Academy of Neurology’s members believed that gender identity was irrelevant to the management of neurological conditions.
Advocates for transgender health care often miss this point as well. The World Professional Association for Transgender Health (WPATH) creates clinical management guidelines for the care of transgender people. The latest version, released in 2022, does not address many common neurological conditions and their treatment. Taking these absences together, it is no surprise that neurologists are at a loss when providing medical care to a transgender person who has experienced a stroke, seizure or migraine headache.
My colleagues and I have been publishing case studies and reviews to address these issues. In the process, we have documented a multifaceted health care challenge. There are notable gaps in neurologists’ ability to clinically practice with, educate or study transgender people. Publicly out transgender clinicians or researchers make up a small proportion of authors of scientific research and publications. As a result, articles published in neurology journals often include outdated or offensive language and terminology to describe the transgender community.
Nevertheless, scientific research throughout the last decade has demonstrated that being transgender can have a lot to do with the health of the brain and the rest of the nervous system. A complex interplay of factors are at play, including stress and discrimination as well as the nuanced effects of hormonal medications that many, though not all, transgender people use as part of their medical transition process. Simply put, transgender people have both distinct risks and treatment needs that the neurological community needs to better understand.
For example, studies involving transgender people illuminate a pattern in which social stressors—such as discrimination, stigma, bias, violence and rejection—take a serious toll on the body. Experiencing prolonged periods of elevated stress results in physiological changes—such as an elevated fight-or-flight response—with many consequences, including harming the blood vessels that supply the brain with oxygen.
A study published last year tracked more than 800 gender-diverse people with headaches, about half of whom were diagnosed with migraines. This study found that participants who experienced discrimination and trauma had increased disability because of their migraine headaches. In fact, pain disorders such as migraine may worsen in proportion to the amount of discrimination a person experiences. This link may explain why one study found that among Medicare beneficiaries, rates of epilepsy and migraine were three times higher in transgender people compared with cisgender people. Social factors can also affect cardiovascular health for transgender people, a link the American Heart Association has proposed reflects the biological effects of gender-related social stressors.
In addition to elevated health risks, research underscores several failings in the treatment that transgender people receive. Care for people who have had a stroke presents a powerful example. When someone is having a stroke, getting to the hospital as quickly as possible can save their brain functioning and their life. Surveys conducted in several countries show that transgender people often delay or avoid seeking medical care, however, because of previous negative interactions with the health care system. Additionally, because gender is often not assessed in acute stroke trials, it is unknown whether transgender people respond differently than cisgender people to treatments for stroke used in an emergency setting, such as clot-busting medications.
Yet another important factor is hormone treatment. Some affirming hormonal medications prescribed to transgender people, such as the feminizing compound estradiol, may increase the risks of blood clots, stroke and migraine. Given these links, a neurologist might discontinue a person’s hormone therapy after they experience a stroke or chronic migraines. But doing so could harm that person’s mental well-being: hormone therapy reduces depression and suicidality, for example, in transgender people who desire this type of gender-affirming care. Neurologists therefore ought to seek informed consent from patients and to discuss a patient’s preferences with their hormone prescriber. That collaborative approach could potentially lead to a different prescription—such as low-dose estradiol—or an alternative treatment.
Stepping back from the existing healthcare limitations, there are many positive changes underway for the neurological care of transgender people. The representation of transgender patients and health care providers is rising as advocacy efforts within neurology improve. Earlier this year several neurologists argued in the journal Stroke that stroke care providers need to learn more about the importance of reducing implicit and systemic biases within health care environments. Such changes could improve care for transgender people.
But until more neurologists recognize and develop their knowledge of these issues, many transgender people will lack needed health care access. As a transgender person, I myself cannot easily find other transgender neurologists to provide my personal medical care. WPATH’s directory of gender-affirming health care providers does not include a specialty category for neurologists. Given the rising number of Americans who are transgender, the country may be approaching a public health crisis, particularly among children and teens because a larger percentage of people in younger generations are transgender.
For myself and the small number of publicly out transgender neurologists, there are reports of discrimination and bias in workplace and health care settings. Similar issues have been found in interviews of deidentified physicians and medical trainees. How medical professionals treat transgender colleagues is a good litmus test of how well we providers treat transgender patients. Given the lack of publicly out neurologists, I posit that our transgender patients are not at the forefront of our minds when we provide neurological health care. In the end, my critics’ question—“What does being transgender have to do with neurology?”—is in itself sound evidence for the need to improve transgender health care, education and research within the field.
Are you a scientist who specializes in neuroscience, cognitive science or psychology? And have you read a recent peer-reviewed paper that you would like to write about for Mind Matters? Please send suggestions to Scientific American’s Mind Matters editor Daisy Yuhas at pitchmindmatters@gmail.com.
This is an opinion and analysis article, and the views expressed by the author or authors are not necessarily those of Scientific American.
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