ARTICLE IN BRIEF
The launch of a new AAN LGBQTI Section elicits discussion about how other medical societies are addressing professional and training concerns for an underserved patient population.
The AAN Board of Directors has voted to establish a new Section aimed at improving medical care for patients who identify as lesbian, gay, bisexual, transgender, queer or intersex (LGBTQI) and provide a more inclusive environment for physicians who identify themselves as LGBTQI, as well.
The LGBTQI Section is supported by a growing number of studies finding meaningful clinical differences in the risk and treatment of certain neurological disease between straight and LGBTQI patients, said Holly Hinson, MD, MCR, assistant professor of neurocritical care, neurology and emergency medicine at Oregon Health & Science University in Portland.
“Despite the evolution of attitudes in the United States, LGBTQI people still face significant social stigma, and that contributes to health disparities,” she said.
Dr. Hinson, who proposed establishing the AAN section, said a 2015 survey in Teaching and Learning in Medicine found that two-thirds of 4,262 medical students rated their LGBT curriculum as “fair” or worse and about one-fourth said they felt unprepared to discuss sex reassignment surgery or gender transitioning with their patients.
Indeed, other medical specialties have also begun to recognize the shortfalls of medical education on issues pertaining to transgender patients. A survey of endocrinologists published in January in the Journal of Clinical Endocrinology & Metabolism found that of 411 respondents, only 20 percent said they had received any training in how to provide hormonal treatment to transgender patients.
“We need to do a better job educating our current and future health care providers,” said the study's first author, Caroline Davidge-Pitts, MBChB, an endocrinologist and member of the Mayo Clinic's specialty clinic in transgender and intersex medicine, one of just a handful in the United States.
“You don't need to identify with the condition to treat it, just as you don't have to have multiple sclerosis to treat MS patients,” Dr. Davidge-Pitts said. “For me, I was drawn to providing for an underserved population.”
She encouraged neurologists and other clinicians who may not have previously treated a transgender patient to avoid what she calls the “broken arm syndrome.”
“Some providers may see a transgender patient who has, say, a broken arm,” she said. “The provider may spend much of the visit discussing the patient's gender identity, even though the reason for the visit was the broken arm,” she said. “It's not that the physician is trying to be disrespectful, but they need to let the patient lead the visit. If the patient wants to talk about their gender identity, that's great, but if the patient is not leading the conversation that way, it shouldn't become the focus of the visit.”
Joshua D. Safer, MD, is medical director of the Center for Transgender Medicine and Surgery at Boston University and Boston Medical Center, one of the oldest and largest of its kind in the country. He urged neurologists to educate themselves about best treatment practices for transgender people.
“Beyond having a welcoming environment,” Dr. Safer said, “neurologists need to have some understanding of the condition. If a patient they see regularly says, ‘This is in my life,’ they need to have some perspective on what the next steps ought to be, just as they would for other medical conditions.”
Referring a depressed or suicidal patient to a psychiatrist is appropriate, Dr. Safer said, but otherwise, the most appropriate referral for a person seeking to transition should be referral to a competent endocrinologist or specialty practice.
“The medical profession has a great deal of experience with hormonal and surgical treatment, and it's overwhelmingly safe and effective,” he added. “We do have people who regret it, but they are vanishingly few. When people were sent only for counseling to try to ‘fix’ them, they had a 40 to 50 percent rate of suicide attempts.”
THE LANGUAGE OF GENDER IDENTITY
In an editorial in the August 2015 issue of JAMA Neurology, Nicole Rosendale, MD, and Andrew Josephson, MD, FAAN, both neurohospitalists at the University of California, San Francisco (UCSF) Medical Center, pointed out that the significance of such issues frequently goes unrecognized in neurological care.
These unique challenges begin with the very language used to discuss gender-related issues. Some might wonder, for instance, how the meaning of the word “queer” is distinct from lesbian, bisexual, gay, transgender or intersex, the authors wrote.
“How people identify and the terminology they use to identify their sexual orientation is often generational,” Dr. Rosendale, neurohospitalist fellow and member of the neurology department's diversity committee at UCSF Medical Center, told Neurology Today.
“There are subtleties to all of the various terms. I identify as ‘queer’ because ‘lesbian’ is a little constricting. It implies a gender binary: A female identified person is having a relationship with another female. That's not the case for everyone.”
The American Psychiatric Association's (APA) efforts to address these issues dates all the way back to 1973, when its board of trustees voted to cease classifying homosexuality as a psychiatric disorder. As recently as 2013, however, the DSM included a gender identity disorder (GID) diagnosis, a term that was considered offensive to many transgender people.
“The diagnosis has had different names at different times,” said William Byne, MD, associate professor of psychiatry at the Icahn School of Medicine at Mount Sinai, who chaired the APA's task force on treatment of GID. “The diagnosis formerly known as GID has now been renamed gender dysphoria. This new name makes clear that the problem lies with one's experience of dysphoria, not their gender identity.”
Jack Drescher, MD, a clinical professor of psychiatry at New York Medical College who has been a member of the APA working group, explained: “The recommendation is to move it out of the mental disorder section, because dysphoria describes a distressed state of mind that applies only to some people who are transgender.”
As the AAN seeks to address LGBTQI issues, Dr. Drescher said it should not expect to have the support of all members.
“You're never going to have everybody's approval, so give up that goal,” he said. “You shouldn't worry too much about those on the fringes.”
Although her own experiences as a physician working in San Francisco have been positive, Dr. Rosendale said, “I do still know a number of LGBTQI providers who are scared to be open about it. They're not sure how they will be treated. I think it depends in part on where you are located geographically.”
The fact that an unwelcoming attitude toward LGBTQI patients might be intentional on the part of some neurologists, rather than accidental, has not been lost on Dr. Hinson.
“There are several ways the Academy can address this area, both for our members and our patients,” Dr. Hinson said. “For one, [we should stress that] knowledge of a patient's history improves diagnostic accuracy. Someone taking estrogen as part of a gender transition might be at higher risk for ischemic stroke, for example, particularly if that person smokes. And we know that tobacco use rates are higher in people who identify as LGBTQI.”
“Participation in this new Section is optional,” she said. “But we hope to inspire interest among providers, especially those who do not identify as LGBTQI, and to create a safe space to learn more.”
The Section, which will meet for the first time at the AAN Annual Meeting, will have a Synapse online community on AAN.com and will be open to all AAN members who are interested in providing care to these underserved patient populations.
A MYSTERY SOLVED
Beyond the need to establish a sensitive, welcoming environment, recent studies have identified clinically meaningful differences in neurological diseases between straight and LGBTQI patients.
One of the cases, first reported at the AAN Annual Meeting in 2015, was subsequently published in the March 3, 2016, issue of the Journal of Neuromuscular Disorders.
The case involved a 40-year-old male-to-female transgender person, said the paper's senior author Christopher Grunseich, MD, a neurologist and senior clinical fellow in the Neurogenetics Branch of the National Institute of Neurological Disorders and Stroke. Despite total suppression of androgens, the patient displayed symptoms of Kennedy's disease, also known as spinal and bulbar muscular atrophy.
Because the X-linked disease is caused by polyglutamine expansion in the androgen receptor, it is typically dependent on androgens for manifestation, and so is seen in males.
The patient contacted the laboratory Dr. Grunseich works in because it specializes in the treatment and study of the disease, which is sometimes mistaken by clinicians unfamiliar with it for amyotrophic lateral sclerosis. (It can be distinguished in an exam by the involvement of sensory neurons and by its slow progression, which permits patients to live for decades after initial diagnosis.)
“She knew of us through her brother, who is affected, but she was curious as to how this could be occurring despite her taking androgen suppression,” Dr. Grunseich told Neurology Today. Even so, he said, “Compared to the average patient we see with Kennedy's, she was more reluctant initially to discuss information and to participate. I could sense there was some hesitation.”
Once the patient realized that Dr. Grunseich was welcoming and an expert in Kennedy's disease, “she started to share a lot of details that were helpful for us in trying to piece together a chronology of the onset of her symptoms and why she was symptomatic.”
Using cell culture and animal models, Dr. Grunseich and his group found that spironolactone, the anti-androgen she had taken for 15 years, promotes nuclear localization and toxicity of the mutant protein. This, they concluded, was the likely cause of her symptoms.
“We were concerned about her particular choice of spironolactone and reviewed our findings with her,” he said. “We discussed that we found evidence of toxicity in our cell and animal models. We recommended that she review our findings with an endocrinologist. At this point, we understand that she has chosen a different androgen antagonist for her therapy plan.”
FIRST MEETING AT THE AAN ANNUAL MEETING
Neurologists seeking to provide a welcoming clinical environment for LGBTQI patients can find helpful information in guidelines created in 2006 by the Gay & Lesbian Medical Association, available as a PDF on its website at www.glma.org. The new Section will host its first meeting at the AAN Annual Meeting at noon on Wednesday, April 26, at the Westin Boston Waterfront Hotel.