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Demand surges for clinicians serving transgender youth — and for earlier treatment

LOS ANGELES — Pediatrician Dr. Johanna Olson-Kennedy uses a stethoscope and otoscope, of course. But running a clinic for transgender youth means her pediatric medical supplies also include a selection of silicone penises and chest-flattening binders.

Thanks to the openness of Caitlyn Jenner and others, public awareness of transgenderism — and demand for trans-specific medical care like counseling, hormone treatments, and genital surgery — is exploding, even for the youngest of patients. At the 30-plus clinics for transgender youth across the US, doctors like Olson-Kennedy can barely keep up with the demand.

Chicago’s Lurie Children’s Hospital, for example, opened its trans clinic just four years ago but already has 500 patients — and a four-month waiting list. Seattle Children’s Hospital opened its clinic in October and immediately got scores of calls. Olson-Kennedy’s clinic, the Center for Transyouth Health and Development at Children’s Hospital Los Angeles, is the country’s largest, treating 725 trans youth from across the western US. Five hundred of those patients are Olson-Kennedy’s.

Her youngest patient is 3.

What her patients share is the strong, almost certain, belief that they have been born into the wrong body. Their brains tell them they are one gender, their bodies another. Too often, Olson-Kennedy said, these kids have no one to help guide them or ease their pain or even offer routine medical care without disparaging them. “You sit in this room with these young people and see their distress so clearly,” said Olson, a 47-year-old California native. “It’s not OK to do nothing.”

So Olson-Kennedy battles. She fights with insurance companies, tangles with pediatric colleagues who think children are too young to transition, and persuades reluctant parents to help their distressed kids. She’s even taken on the authors of “What to Expect When You’re Expecting” for not including a section on transgender children. And now, just as her fledgling field is beginning to gain medical and mainstream acceptance, she’s got a new adversary: President-elect Donald Trump, who many fear will erode the recent gains of the transgender community and cut access to the health care they need to transition.

“It’s my number one concern right now,” Olson-Kennedy said. “I’m very worried.”

But there are also signs of hope. Olson-Kennedy is helping lead the first National Institutes of Health grant for research on transgender youth, now in its second year. And she and others hope that data will help win out over discrimination.

Dr. Johanna Olson-Kennedy specializes in the care of gender non-conforming children and transgender youth at Children's Hospital Los Angeles. (Photo by Melissa Lyttle)

Dr. Johanna Olson-Kennedy specializes in the care of gender non-conforming children and transgender youth at Children’s Hospital Los Angeles. Photo by Melissa Lyttle/STAT

Olson-Kennedy’s clinic sits on the fourth floor of a bank building on a busy stretch of Sunset Boulevard. In her office with a view of the iconic Hollywood sign, she counsels patients and their parents — a good many of whom have driven or flown from distant states to see her. She can spend hours getting to know a patient before beginning any medical treatment.

The youngest patients receive no medical interventions, just counseling. Olson-Kennedy describes one 18-month-old, born a girl, who understood her gender before her grammar. “I a boy,” she repeatedly told her parents. Many young children who experiment with gender roles end up reverting to their birth gender.

But when the gender discomfort persists into adolescence, said Olson-Kennedy, it’s usually there to stay. And puberty, when secondary sex characteristics develop, can be a dangerous trigger.

“I’ve had mothers call me who say their child tries to kill themselves every time they have their period,” Olson-Kennedy said. “Parents come in saying, ‘My kid tried to cut off his penis with dental floss.’”

Olson-Kennedy’s first line of treatment for adolescents is stopping puberty so children and their parents can buy time to sort out what they want to do. Puberty blockers, GnRh agonists like the injectable Lupron or the implant Supprelin, suppress puberty by modifying hormone release. Such drugs have been used off-label safely for more than 30 years to stop early puberty.

Trans doctors say it’s critical to stop puberty before the body morphs in ways that are difficult to change — the broadening of shoulders for men, for example, or the rounded hips of women. “Even 14 or 15 is too late,” said Dr. Norman Spack, an endocrinologist who founded the country’s first transgender youth clinic at Boston Children’s Hospital.

Once children are ready to make a permanent change, they can stop puberty blockers and use masculinizing or feminizing hormones. Some trans youth go on to have surgery to remove breast tissue or add breast contours or alter their genitals. Others forego surgery and use binders and packers to alter their body shape.

While some religious groups oppose the process of transitioning — and radio host Laura Ingraham, in the running to be Donald Trump’s press secretary, told her listeners to wear adult diapers rather than use public bathrooms with people who are trans — Olson-Kennedy and her colleagues mostly ignore the flack. They say the care they are providing is not only reducing emotional distress but saving lives. Without support and treatment, Olson-Kennedy said, trans kids are a risk for almost everything: depression, self harm, substance abuse, homelessness, HIV and suicide.

Athena Fenstermacher, 18, of Long Beach, has routine blood work and labs to check the hormone levels among other things, about a month before her gender confirmation surgery.  (Photo by Melissa Lyttle)

Athena Fenstermacher, 18, of Long Beach, has routine blood work and labs to check the hormone levels among other things, about a month before her gender confirmation surgery. Photo by Melissa Lyttle/STAT

Athena Fenstermacher was born male, but identified as a girl from her earliest days. “As soon as she could pick colors. As soon as she could talk,” said her mother, Jill. “There are pictures of me with a buzzcut and plastic heels and a Barbie,” Fenstermacher said. “I just knew I wasn’t born into the right body.”

Now 18, Fenstermacher is a petite and pretty blonde, demure, graceful and mature beyond her years. Living in nearby Long Beach, she found Olson-Kennedy at 15, after years of confusion and deciding she must be a gay male. “I didn’t even know transitioning existed until I was 14,” she said. “Everyone told me, ‘We don’t know what to do.’” Her treatment was further delayed by counselors who told her she had to undergo months of therapy before they would give her a referral to Olson-Kennedy. (While Olson-Kennedy said therapy is important, she said it should not be used as a roadblock to seeing a physician.)

Fenstermacher’s transition was excruciating. She attempted suicide, she said, after enduring extended bullying through high school and dealing with issues like trying to find a bathroom she could use comfortably. A 2015 study by the National Center for Transgender Equality found a majority of transgender Americans avoid using public bathrooms, even going so far as to limit their food and water intake when away from home. For 8 percent of people surveyed, this led to urinary tract or kidney infections.

It all took a toll: Fenstermacher went from an honors student with a stellar GPA to barely passing. She ended up earning her degree at home. Now, she fights constant loneliness and a sense she’s always being stared at and appraised. She hasn’t been swimming in seven years and says her slightly wider shoulders make her feel like a linebacker. She’s wistful when she describes watching her younger sister develop into the body she wishes she could have had. And she’s angry at her own genetics and a world that won’t accept her.

Fenstermacher is willing to discuss her experience and care because she’s so appreciative of Olson-Kennedy and because she wants people to understand the intense pain that comes with struggling with your birth gender. But she flinches every time her physician says the word “trans.” That word, Fenstermacher said, sets people to gawking, making judgements, and scrutinizing.

“I don’t feel like a trans woman.” Fenstermacher said. “I feel like a woman.” The word trans, she said, conjures up extremes: the flamboyant models of “Strut” or wealthy trans women like Caitlyn Jenner who order up any medical or cosmetic treatment they want. “The battle is a little different when you can just walk out the door and get facial feminization surgery,” said Fenstermacher, who dresses simply in jeans and T-shirts and, with her mother, has struggled to pay for therapy, treatment, hormones, and the surgery she recently underwent at a private clinic in San Francisco.

Athena’s mother fully supported the transition. “When you see their pain, you do what you have to do,” she said. Divorced and a waitress, Jill Fenstermacher literally had to scrape and borrow to get the money for Athena’s care, which was only partially covered by insurance. The costs of getting a legal name change, changing Athena’s driver’s license, it all adds up. “I told her, ‘I don’t care if I have to sleep in my car, I’m helping you do this.’” She’s battled so much: school districts, insurance companies, therapists, doctors. “I’m like the front line for her,” Jill Fenstermacher said. “I try to protect her, but there’s so much discrimination.”

Dr. Johanna Olson-Kennedy specializes in the care of gender non-conforming children and transgender youth at Children's Hospital Los Angeles. She checks up on patient Athena Fenstermacher, 18, of Long Beach, doing routine blood work and labs to check the hormone levels among other things, about a month before Fenstermacher's gender confirmation surgery.  (Photo by Melissa Lyttle)

Dr. Johanna Olson-Kennedy specializes in the care of gender non-conforming children and transgender youth at Children’s Hospital Los Angeles. She checks up on patient Athena Fenstermacher, 18, of Long Beach, doing routine blood work and labs to check the hormone levels among other things, about a month before Fenstermacher’s gender confirmation surgery. Photo by Melissa Lyttle/STAT

Not all doctors agree with the approach of Olson-Kennedy and her colleagues. Some think young patients will grow out of their gender dysphoria, or that children should wait until they are 18 to make critical gender decisions. Many would simply like to see data on whether delaying puberty and allowing children to transition at younger ages is safe and healthy for them in the long run.

Olson-Kennedy is hoping to oblige. In 2015, she and three other leading trans youth doctors received the first NIH grant given to study transgender youth. The $5.7 million, five-year study will look at nearly 300 youth, some who received puberty-blocking hormones and others who took masculinizing or feminizing hormones after puberty. Teams at children’s hospitals in L.A., San Francisco, Boston, and Chicago have recruited patients and are now collecting data to evaluate the effect of treatment on mental health and determine how safe the treatments are.

The doctors think the study will prove that early treatment and puberty-blocking lead to far better long-term outcomes, making it easier for doctors and parents to accept that approach.

“It’s an imperfect field with regards to decisions we are asking these families to make,” acknowledged Dr. Robert Garofalo, who co-directs the Center for Gender, Sexuality and HIV Prevention at Chicago’s Lurie Children’s Hospital and is also working on the transgender youth study. Garofalo hopes the team will be able to study patients far beyond the current five-year term to address a host of questions that currently have no answers. Does hormone use in trans youth increase breast cancer risk? How well do adults who have transitioned as teens grapple with their loss of fertility? “These are things that are entirely unknown,” Garofalo said.

And the researchers are hopeful that more data will help to combat misconceptions, both publicly and within the medical profession itself.

Olson-Kennedy points to the stories she hears of pediatricians who say they don’t believe in providing trans care. “You don’t have people opting out of diabetes care because they don’t believe in treating diabetes,” she said.

Insurance companies also prove a roadblock for many of her patients. But with California law making it illegal to deny care for gender dysphoria and with her healthy appetite for a fight, Olson-Kennedy usually gets her way. “I have template letters for 100 different denials,” she said. “I just fax in a 100-page appeal and tell them if they deny me, I’m going to fax in 200 pages.”

The most counterintuitive end goal of such specialized transgender youth clinics may be to eventually not even need them.

“My goal is to make this absolutely mainstream,” said Dr. Cora Breuner, an orthopedist and pediatrician at Seattle Children’s Hospital who chairs the American Association of Pediatrics committee on adolescence. “People should not have to drive 17 hours for this care.” She thinks more kids would get the care they need if pediatricians — usually the first doctor parents seek out — were more comfortable with trans patients. Sensing urgency, the AAP is currently fast-tracking a statement on care for transgender kids, Breuner said.

A 4-year-old patient drew this picture for Dr. Olson-Kennedy, and her parents framed it. It now hangs proudly on the wall of the doctor's office. Photo by Melissa Lyttle/STAT

A 4-year-old patient drew this picture for Dr. Olson-Kennedy, and her parents framed it. It now hangs proudly on the wall of the doctor’s office. Photo by Melissa Lyttle/STAT

Many physicians have a long way to go. The Twitter hashtag #transhealthfails chronicles a litany of frustrating experiences, from trans women being forced to take pregnancy tests before X-rays despite their not having uterus, to a doctor saying he couldn’t put a cast on a broken arm because he wasn’t versed in trans health care.

Sixteen-year-old Shay Sullivan, a Montana resident, had a series of frustrating medical experiences before the family found Olson-Kennedy four years ago. For years, the Sullivan family had tried to find care closer to home and dealt with a palpably uncomfortable local pediatrician. All the while, Shay was becoming increasingly anxious. The clock was ticking as puberty approached.

After the family’s first meeting with Olson-Kennedy, Sullivan’s mom, Shelley, said, “We just looked at each other. We were so relieved. We finally found someone who was going to help us find our way.”

The family’s insurance covered all but $200 of the cost of Shay’s $17,000 hormone blocking implant and helped cover the gender confirmation surgery she had at 16. (Most doctors wait until patients are over 18 for such surgery, but Shay was considered exceptionally mature, her mother said.) The family paid for the travel to see Olson-Kennedy and for staying in Arizona for nearly two weeks for the surgery. “We’re fortunate,” said Shelley, a physical therapist. “We both have good jobs and are able to afford it.”

Today, Shay is a driven high school junior, earning an International Baccalaureate degree in high school as well as learning several languages and is planning to study abroad during college. She doesn’t travel as much to the Los Angeles clinic now because her pediatrician has agreed to work with Olson-Kennedy to provide her care. Shay volunteers to help other trans teens in Missoula and is having a “pretty good year socially,” she said. One low point: Since entering high school, she’s not allowed to play on girls’ sports teams.

Doctors on the front lines of transgender youth care say they are heartened that children are coming in at younger ages and that transgender youth clinics are opening in suburban areas. But they’ve also nervously got their eyes on what Trump may do.

“I don’t know if it will be any worse, but I don’t think things will get better,” said Boston Children’s Spack, 73. “I’m old enough to remember when homosexuality was considered a disease. Those ideas die hard.”

Garofalo, a self-described optimist, said he hopes medical care for trans kids won’t suffer greatly under the new administration. But he said, “I’d be naive not to be worried.” He said he is definitely “poised to fight,” if needed, to protect his patients and families.

Olson-Kennedy already has her sleeves rolled up. She’s worried about policy changes, like a dismantling of the Affordable Care Act, that might remove the insurance coverage trans youth need. But she’s also worried about an emerging ethos that may allow open discrimination and violence against transgender youth and adults.

“We’ve made such incredible strides,” she said. “We don’t want to see people going underground again.”

This article is reproduced with permission from STAT. It was first published on Dec. 20, 2016. Find the original story here.

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