Update to readers: Since this article was published, leadership changes at the Johns Hopkins Center for Transgender Health include the appointment of plastic and reconstructive surgeon Fan Liang as medical director. Paula Neira now serves as program director of LGBTQ+ Equity and Education in the Johns Hopkins Medicine Office of Diversity, Inclusion and Health Equity.
As he settles into a new office at the Johns Hopkins Center for Transgender Health, medical director Devin O’Brien Coon describes the life-changing surgeries that are part of his daily routine and that signal a new era at Johns Hopkins Medicine.
The day before, the plastic surgeon spent 10 hours reconstructing the bones of a face to make it appear more feminine.
The next day he will perform the first stage of a phalloplasty for a patient who is transitioning from female to male. This multistage operation will make a functional penis using tissue from the patient’s own forearm, and it will require complex microvascular and nerve surgery. The physician considers the 14-hour procedure to be the most challenging of the gender affirming surgeries he performs.
“It’s very ambitious in terms of the magnitude of what you’re trying to do,” he says. “Sewing 1-millimeter blood vessels together under the microscope is a very high stakes operation.”
Since the center opened in 2017, O’Brien Coon has performed roughly 150 gender affirming surgeries — at least a dozen of them phalloplasties; more surgeries are scheduled into August 2019. So far, nearly 900 people have requested transgender health related services that include primary care and hormone therapy.
“When we opened the Center for Transgender Health, we knew we were filling a largely unmet need for our patients. But the center’s reach and impact has exceeded all of our expectations,” says Redonda G. Miller, president of The Johns Hopkins Hospital.
The transgender health service involves 25 to 30 professionals across many departments, including plastic surgery, urology, gynecology, endocrinology, dermatology, mental health, nursing and social work.
Patients can receive hormone therapy, hair removal and voice therapy, along with gender affirming surgeries that include facial feminization, “top surgery” — chest masculinization mastectomy and breast augmentation, and “bottom surgery” — such as phalloplasty, metoidioplasty (which makes a penis from a clitoris that has been hormonally enlarged), hysterectomy and vaginoplasty, which creates a vagina. (See glossary.)
In addition to his medical degree from the University of Pittsburgh, O’Brien Coon has a master’s degree in biomedical engineering from the Johns Hopkins University Whiting School of Engineering. He uses computer models that help him analyze what will work best for each patient. Every procedure he completes maps new territory in a surgical realm for which there are no best practices.
“There’s no good educational resource to tell you how to do a phalloplasty that is fully functional and has sensation. Everybody who wants to learn how to do it typically has to travel to watch it being done,” O’Brien Coon says. “In surgery, rare, highly specialized techniques are sometimes learned that way. In those situations, however, you can supplement that with textbooks and references. We don’t even have that.”
O’Brien Coon first performed genital affirming surgeries as part of his fellowship in the joint Johns Hopkins/University of Maryland plastic surgery program. He continued his training by observing internationally recognized plastic surgeons in Europe and the United States.
He wants to make it easier for those who follow. Since the center opened, he has worked closely with artist Hillary Wilson, a graduate of the Art as Applied to Medicine program, to create explanatory medical illustrations of bottom surgeries and facial feminization that serve as resources for patients, other surgeons and medical students. In conjunction with a team at the Johns Hopkins University School of Medicine, they are developing a self-paced online module to educate health care providers about a range of transgender health topics — the first module addresses gender affirming surgery.
The creation of the center opens a new chapter in the hospital’s relationship with the LGBTQ community. Fifty years ago, Johns Hopkins Medicine was the leading academic medical center providing transgender health care in the United States. Then, amid controversy about its services, the original Gender Identity Clinic closed in 1979.
Now the medical establishment considers gender-affirming care, including surgery, to be the appropriate treatment for people with incongruence between their gender identity and the gender assigned at their birth.
In 2015, Johns Hopkins leaders pledged to resume gender affirming surgery as part of a package of comprehensive health care. A task force began planning the structure and scope of the new center while the Office of Diversity and Inclusion expanded efforts to educate staff about transgender care.
“With the establishment of the Johns Hopkins Center for Transgender Health, Johns Hopkins Medicine has returned to our roots as a leader in providing care to a population that faces many health care disparities,” says Paul B. Rothman, dean of the medical faculty and CEO of Johns Hopkins Medicine.
“In the 21st century, it is clear that gender affirming care, and gender affirming surgeries, have established benefits for some patients. By providing objective and supportive care grounded in evidence-based medicine and best practices, the center is helping patients in need.”
When the center opened, clinical program director Paula M. Neira knew that many in the transgender community longed for therapies to free them from gender dysphoria, the persistent distress felt by someone whose gender does not match the one assigned at birth.
She knew that a landmark antidiscrimination court ruling had greatly expanded health insurance coverage for transgender people, allowing many to consider gender affirming procedures that can cost $30,000 or more.
But she did not anticipate the pent-up demand. For its first year, the center planned to serve up to 200 patients. In a year and two months, it has already worked with four times as many.
Johnny Boucher, one of O’Brien Coon’s first phalloplasty patients, explains the relief of finally getting access to surgery as well as to nonjudgmental treatment.
“I’ve had many experiences of trying to see a doctor and being told, ‘We can’t see you here, we don’t treat different folks,’” says the Dallas elementary school teacher. “Or you hear, ‘We’re a family doctor’ — which is code for, ‘You’re disgusting.’ Being at Hopkins was like breathing fresh air.”
Boucher says his greatest joy is knowing that his body finally reflects his gender.
He recalls the moment when O’Brien Coon first removed the bandages. “I just had this sense of my body being well and healthy,” he says. “The circulation was there, the blood was flowing, and I experienced this great feeling of warmth and wholeness.”
The teacher has shared this, and many other details of his surgical experience, through a transgender social media support group. “A couple-thousand folks online have said, ‘This helps me know that I should get this surgery.’ They say, ‘I would do anything to be at home in myself.’”
Transgender Research and Education
At Johns Hopkins Medicine, the commitment to providing transgender health care also means advancing research and education.
Surgeon-scientist O’Brien Coon says his ideal workday begins in the Translational Tissue Engineering Center, where he is researching novel ways to engineer tissue that can spare phalloplasty patients the pain and risk of taking tissue from their forearms or thighs.
“One of the underserved areas of transgender medicine is that there’s not much in the way of scientific research,” he says. “Part of it is due to funding, and part is that few scientists and Ph.D.s have opportunities to interact with this community and understand what their needs are.”
As for clinical education, he encourages medical students and residents to observe gender affirming surgeries — opportunities he hopes may lead to regular rotations and fellowships.
Meanwhile, Johns Hopkins internist Helene Hedian and Errol Fields, a Johns Hopkins adolescent medicine subspecialist, are implementing a curriculum on LGBTQ health for medicine and pediatric residents. Since the Center for Transgender Health opened, Hedian has acquired more than 30 transgender patients in her primary care practice at Green Spring Station from word of mouth and referrals.
“I think there is a perception that it is uncommon for people to be transgender,” she says. “People say, ‘Yes, we have this center, but how many transgender people are there really? And how important is it for physicians to dedicate time in their busy medical curriculum to teach trainees about this?’”
There are roughly 1.4 million transgender people in the United States — 22,300 in Maryland — according to a 2016 study by The Williams Institute, a public policy research institute at the University of California Los Angeles School of Law that focuses on sexual orientation and gender identity issues.
“In the United States, there are more people who are transgender than who have multiple sclerosis or sickle cell disease or hereditary hemochromatosis,” Hedian says. “We spend an awful lot of time learning about those conditions in our medical training.
“Put in that context, you can say, ‘You will certainly meet a transgender person in your practice — if you haven’t already.’”
A New Day
“Anna,” the first transgender woman to receive a vaginoplasty at the center, recently celebrated what she now considers her first birthday. She says her life as a woman began Aug. 2, 2017.
“I knew I would be the first woman to be born at the opening of this clinic, and I would somehow become the matriarch of something great,” says Anna, a resident of Washington, D.C., who requested anonymity. “I could not ever imagine having a better experience from consultation to recovery. ... It’s such a high to realize that what you knew would make you happy actually does.”
The date also marks a milestone for her surgeon. When O’Brien Coon decided to treat transgender patients, he wanted to help “a group of people who were facing constant, undeserved prejudice, even within the health care system.” Anna’s gender affirming bottom surgery was the first that he performed at Johns Hopkins — and the first at the hospital in almost 40 years.
“It was the real exclamation point on the center being open,” O’Brien Coon says. “Not only did it reflect on a year and a half of groundwork, but it showed that the priorities and the goals of Johns Hopkins Medicine had changed. And everybody, from the OR staff to the administrators to the nurses, everybody was onboard.”