Ashlee Freeman, a transgender woman from Durham, N.C., got a list from her insurer of doctors who could perform her gender-affirming surgery.
The first was nearby but inexperienced in what was once called gender reassignment. The next was just east of Baltimore at MedStar Franklin Square Hospital, which launched a program about three years ago.
“I live really close to the first hospital, but drove five hours to the second,” said Freeman, 33, who had a vaginoplasty at Franklin Square in June and recently returned to handle paperwork. “Like everyone who has a major procedure, I wanted the doctor with experience.”
Access to such procedures is something of a last frontier for LGBT health care. There are growing lists around the country of primary, specialty and behavioral health providers for transgender people, but big geographic gaps remain between established surgical programs.
With specialized programs at Franklin Square and Johns Hopkins hospitals, providers and observers say Baltimore is becoming an important center for transgender medicine, particularly the surgeries that can be the final step in a transition.
The reputation is largely based on anecdotal evidence. Unlike other specialties, there is little official data on procedures, and there is no certifying medical board for transgender surgeons or even a U.S. News & World Report-style ranking. Hopkins and Franklin Square both launched programs in 2017.
To find surgeons with the most experience and least complications, potential patients rely on message boards and personal recommendations that amount to informal rankings. Freeman says she’s shared her experience, and even photos of her new vagina, to others considering the procedure.
Wait times are emerging as an indicator of quality. Freeman waited 6 months for surgery after first meeting her doctor, delayed only somewhat by coronavirus-related limits on some surgeries. For the most complex procedures, such as penis construction and some facial sculpting, top doctors, such as those in Baltimore, New York and San Francisco, have waiting lists that can stretch into years.
Hopkins is among hospitals that have launched fellowship programs to train more surgeons in the field.
For now, many patients will continue to travel to Baltimore. About 90% of Hopkins patients for its most complex surgeries come from around the country. Franklin Square says it’s drawing patients from Virginia, Pennsylvania and North Carolina, among other places.
Dr. Gabriel Del Corral, the surgeon who helped launch the Franklin Square program, said the center now performs about 25 breast and genital procedures a month.
While not every transgender person wants to have “top” and “bottom” surgery, the community is demanding more access to the procedures, said Dr. Devin O’Brien-Coon, a Hopkins surgeon. He said the transgender surgical field emerged due to and continues to be propelled by a “grassroots” effort.
“There were patients looking for somebody to take care of them,” he said.
Some of the demand is a function of insurance, which has begun covering genital procedures but more rarely facial alterations. Treating gender dysphoria, extreme discomfort with one’s birth identity, is now considered medically necessary.
Procedures are costly out of pocket, with breast reduction or enhancement costing around $10,000 and genital and facial surgery tens of thousands more.
Freeman, whose procedure was covered by insurance, said her recovery is going smoothly. She considers it the last stage of a transition that began when she was 5-years-old and wanted the feminine toys and clothes given to her sister.
She went through life trying to “fit in,” getting married and having two children, despite the internal suffering it caused. Her kids, 10 and 12, still call her “daddy,” which she said was the only masculine word that ever made her feel good.
Freeman realized she was transgender, referred to as “hatching,” in 2016. She was almost 30 and texted a close friend that she had something to tell her.
“Everything started making more sense and things started getting easier for me,” said Freeman, who is separated from her wife but still visits her children in another state about once a month.
Freeman was laid off from a call center job during the pandemic but was able to use continuing health care benefits to pay for her procedure. She’s now in school studying to become therapist for transgender people.
She hopes talking about her process will help others — people considering surgery and providers considering offering the procedure.
“Surgery means validation,” she said. “You stop and think what if I stopped transitioning and decided to live the rest of my life. No, no, no, that’s not the right thing for me.”
LGBT groups continue to add names of transgender care providers to lists they maintain. They also are pushing for better treatment while getting all types of medical care. Surveys show that 70% of transgender people have felt discriminated against when seeking health care.
The Human Rights Campaign’s Health Equality Index seeks to provide some guidance by annually grading institutions on their anti-discrimination policies for staff and patients. The survey, however, gave top marks to just a quarter of 765 systems surveyed nationally. Neither Hopkins nor Franklin Square provided enough information to be assessed.
Many people eager for surgery will overlook bad bedside manner, but the policies and actions of a hospital can affect outcomes if patients don’t return for follow-up care or if their concerns and potential complications are ignored, said the executive director of the National LGBT Cancer Network, who goes by his last name, Scout.
Most people still just don’t have a lot of choice, he said.
“Everybody expects to travel” for surgery, said Scout, a transgender man.
“Some people find local doctors, but you’re not sure they have a lot of experience or they don’t take your insurance,” he said. “So you fly somewhere that someone recommended, even out of the country."
It’s a problem, he said, if people travel so far that "there is no going back for follow-up care. That’s when we start to hear horror stories.”
The Williams Institute, a think tank at the UCLA School of Law that studies transgender policies and issues, now estimates there are 1.4 million transgender people in the United States, including 22,300 in Maryland.
“It’s safe to say the medical needs of transgender people are not being met,” said Jody L. Herman, a fellow at the institute.
Nonetheless, she said, access to medical care is increasing, including surgeries, first performed in the 1980s. States that require non-discrimination clauses in public and private insurance have helped, though the Trump administration has rolled back some protections. The administration has rejected a provision of the Affordable Care Act that bans discrimination based on gender identity and sexual orientation, a move that could affect those with government-backed insurance if upheld in court.
Herman pointed to the 2015 U.S. Transgender Survey Report produced by the National Center for Transgender Equality that found that prior to the law’s protection, a quarter of respondents were denied coverage by their insurer for transgender care such as hormone therapy in the prior year and more than half were denied coverage for surgery.
Discrimination remains behind some of the lack of proper care and training, said Deborah Dunn, a physician assistant who has been working with LGBT patients since 1983 when the HIV epidemic showed the need for tailored care.
Medical schools still offer little specific training, and Dunn said she had to “fly all over the country” to learn from other providers.
She now works for Chase Brexton Health Care, a Baltimore health care system that offers primary care and other services to LGBT patients.
“It used to be medical professionals would outright deny care, discriminate, and we still have those, but now they say things like they don’t feel competent,” she said. “That’s a veiled way of saying your personal biases are keeping you from serving any group of people."
Chase Brexton offers training programs attended by more than 1,000 medical providers in the last year, said Sam McClure, executive director of the system’s LGBT Health Resource Center.
There are basics to learn, such as transgender men still may need mammograms, and hurdles such as changing electronic medical records to reflect a transgender patient’s proper name, McClure said. Learning surgical procedures, however, takes more than a seminar.
“The vast majority of people who have come through the medical education system were taught very little about LGBT people," she said. "If they received any information it probably glazed over transgender people.”
The fellowship Hopkins offers seeks to train surgeons in the area of most unmet demand, the most complicated procedures including facial surgeries and phalloplasty, which is construction or reconstruction of a penis. Surgeons there adapted procedures from those they developed for people with birth defects, illness or trauma.
O’Brien-Coon, chief medical director of the Johns Hopkins Center for Transgender Health, said many doctors outside of large academic medical centers can do a good job on breast procedures, for example, but can’t perform 14-hour genital surgeries.
That is why the few experienced surgeons in phalloplasties have years-long waiting lists. He said complications are not uncommon and some of his patients come to him in need of repairs.
“It’s not fair to learn as you go anymore,” he said. “No one was really good at this 5, 10 years ago, but now we have centers good at this and we need to scale up."
Del Corral said providers need sensitivity training in addition to medical training. He found some in person and some online for his MedStar team of 20 doctors, nurses and staff.
“You can’t just put up a sign,” he said. “We needed to do everything possible to be a place where patients could feel safe to have treatment.”