Hospitals helping children cope with gender ID issues

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They come in the door as early as age 6: a boy who knows she's a girl, a girl who knows he's a boy. Or they're not quite sure either way, but feel uncertainty, pain and confusion about the gender they were assigned at birth.

At Children's Hospital of Pittsburgh of UPMC and at hospitals across the country, clinics are springing up to help children and adolescents navigate the emotionally and physically charged issues of gender identity, a response to demands from a younger generation of parents and greater cultural acceptance of difference.

Being transgender is one of the hottest topics in adolescent medicine, said Elizabeth Miller, chief of adolescent and young adult medicine at UPMC who co-founded Children's Gender and Sexual Development Program three years ago. It's a collaboration with the departments of Pediatric Endocrinology, Adolescent Medicine and Behavioral Health, and more than 30 young patients are currently enrolled, with one or two new patients coming in each week.

"This is just something we needed to do," said Dr. Miller about the program, which provides therapy, hormone testing treatments, special drugs that suppress the onset of puberty and family counseling.

"We've got these kids coming to us, school-age children, who are truly in the wrong body," she said.

The drug that stops pubertal development "allows us to bide time, because you'll have a kid who tells you, 'I don't want a period, I don't want my breast development freaking me out,' and why, indeed, should he? We want to let them have an adolescent transition as a male and see how it works for them."

But how does someone know they were born "in the wrong body," as so many have described it? Is being transgender a choice or is it biology? Why do some children realize they're the wrong gender as early as age 3, and why do others not realize it until adulthood?

On the Children's Hospital website, the answer seems to be a slightly longer version of "We don't know":

"Many health experts believe that being transgender isn't caused by one single thing," it reads. "They believe it's the result of a complex mixture of biology, psychology and environmental factors -- and not simply a matter of choice."

In most medical circles today the condition of being transgender, "gender non-conforming," "gender fluid" or any number of other labels, has been scrubbed of the pathology applied to it in the past. In 2013, the Diagnostic and Statistical Manual of Mental Disorders-V -- the guide used by mental health professionals -- replaced "gender identity disorder" with "gender identity dysphoria." This reflects the stress experienced by transgender people while still providing a diagnosis to allow access to treatment.

But the science of gender is sparse: there are no federally funded National Institutes of Health studies into gender identity, says Johanna Olson, medical director of the Center for Transyouth Health and Development at Children's Hospital Los Angeles, which serves 300 transgender youths and their families.

"It's terrible," she said. "The problem is that the folks who are doing the care aren't doing the research, and the folks doing the research aren't caring for the patient population."

Despite the dearth of research in the U.S., small but important studies have come out in Spain, Australia, the Netherlands and elsewhere, Dr. Olson said. A 2013 Belgian study of 45 transgender men and 42 transgender women found that hormonal therapy, at least in the short term, is safe and effective, despite the use of large amounts of male or female sex hormones -- testosterone for females transitioning to males, and estrogen for males transitioning to females.

There also has been research into the brain structure in individuals with severe gender identity issues, says Randi Ettner, a Chicago-based clinical and forensic psychologist.

"We know it's brain based, but we can't specify exactly how it works, or what accounts for the variations of severity of gender dysphoria," Ms. Ettner said.

One Australian study has identified genes associated with transgender people, while another study of 112 sets of twins showed a high concordance for gender dysphoria, she said. An MRI study in Spain found differences in the thickness of the brain's cortex -- the thin layer of tissue that covers the outer portion of the brain that plays a role in memory, attention, perceptual awareness, thought, language and consciousness.

The first hormone blockers, which stop puberty, were first administered in a Dutch clinic in 2000, and today they're used in Pittsburgh's Children's Hospital program, with girls beginning around age 10 and boys at age 12.

Dr. Olson's center in L.A. has joined with children's hospitals in Boston, Chicago and San Francisco in a NIH proposal to study the long-term health effects of hormone treatments and hormone blockers on 101 young people between the ages of 12 and 24. Meanwhile, parents and medical professionals debate when and how to intervene, since hormone blockers are completely reversible, while hormone treatments and sex reassignment surgery will result in sterility.

Third gender

Across the world gender definitions are more elastic. India's Supreme Court just issued a landmark ruling recognizing transgender people as a third gender, noting, "It is the right of every human being to choose their gender."

In the Philippines, there's a word, "bakla," that doesn't just refer to gay people but men who dress as women, and the Zapotec Indians in the southern Oaxaca, Mexico, also recognize the muxe -- a third gender of men who consider themselves women, a tradition dating back to pre-Colombian Mexico with Mayan gods who were both male and female.

The outside world may be changing, but discrimination is still rampant among health care insurance providers, said Masen Davis, executive director of the Transgender Law Center. One friend was treated for a stress fracture after running -- and then received a massive bill from his company. "They told him that as a transgender man, hormones weaken your bones and that's what created the stress fracture," which wasn't true. While that incident happened five years ago, companies still deny basic coverage they would have had if they weren't transgender.

In Pittsburgh, though, there is a robust network of health care professionals who have been at the forefront in providing the transgender community with basic and transition-related medical treatment.

One recent morning at the office of Martin Seltman, a physician at Metro Community Health Center in Swissvale, a beautiful woman walked into the waiting room, one of hundreds of transgender patients his practice sees each year.

"We're talking with her about ways to provide guidance to other transgender women," said Dr. Seltman, who was asked by Persad, one of Pittsburgh's most active LGBT support organizations, to provide medical care for transgender people 15 years ago. This occurred not long after his own child came out as a transgender male.

"Trans-friendly" medical care includes everything from hormone shots and primary care, too -- not to mention a respectful attitude, which is not always there during the transition process.

"Every time you go to a new doctor, you feel like you have to go through Trans 101 all over again, because a lot of medical professionals just don't know what it is, and have no training," said Chance Thomas, a 33-year old transgender male from Stanton Heights. "You literally have to come out to every medical expert you come in contact with."

Dr. Seltman, along with Stacy Lane and Steve Wolfe, two other physicians who care for many transgender patients, don't do plastic surgery. While it is possible to receive chest reconstruction surgery in Pittsburgh, it's not advertised, so most transgender males and females go elsewhere -- to Cleveland; Fort Lauderdale, Fla.; or Montreal.

Surgically, it's easier to transition from male to female -- the surgeries are simpler and require less reconstruction -- although some "feminizing" procedures, such as laser surgery to remove facial hair or minimizing the Adam's apple, are expensive, time-consuming and painful. But complete female-to-male surgery presents the most difficulties: the cost is $25,000 or more, it is not always successful and there are many more side effects.

Until recently, health insurers generally didn't cover transgender care unless a company asked for it. That is changing, at a rapid rate: In 2009, 49 major U.S. employers offered transgender-inclusive health care coverage. That number has zoomed to 340 in 2014, according to the Human Rights Campaign's Corporate Equality Index.

Five Pittsburgh-based corporations -- PNC Bank, BNYMellon, American Eagle, K&L Gates and Reed Smith -- have received a 100 percent rating in the index because they provide "transgender inclusive" benefits to their employees such as counseling, medical visits, hormone treatments and surgery.

Highmark Blue Cross/Blue Shield also plans to offer transgender-inclusive benefits to its own employees in 2015, said spokesman Aaron Billger, but the insurer does not offer transgender benefits as part of basic coverage to smaller companies.

"We don't see those people who are not self-insured going beyond the basic benefits because of their fear of costs," Mr. Billger said. And yet, self-insured companies have discovered that transition-related care serving a relatively small population is inexpensive compared to cancer drug treatments or heart surgery.

UPMC Health Plan, in a statement, noted that Pennsylvania doesn't mandate coverage of transgender services and "to date we have not been asked to provide, and hence have not offered, a rider for coverage of these services to any employer group." It would "entertain a request" by any employer for such coverage.

California, Colorado, Oregon, Connecticut and Vermont and the District of Columbia have, in the past 18 months, mandated transgender-inclusive care in basic private insurance plans. Pennsylvania has no such requirements.

However, private insurers often take their cues from government providers like Medicare, and on Friday the Department of Health and Human Services announced it would lift a longtime ban on sex reassignment surgery.

While health insurers and companies play catchup, in some areas, the federal government has been moving ahead with dispatch: Federal prisons must provide hormone treatments for transgender inmates who request them, although state prisons have been slower to act, if they do at all. A federal judge in Ohio recently ordered the reinstatement of hormone treatments for a transgender female in a state prison after a prison psychologist denied them, claiming she didn't meet the criteria.

Clearly the health care landscape is shifting -- and national transgender advocates are optimistic, at least publicly.

"It's about social justice," said Dr. Miller of Children's Hospital. "Each of us has a role to play in ensuring that access to health care is equitable and does not marginalize people, and any time there is any of that going on, it is our job to change that."


Mackenzie Carpenter: mcarpenter@post-gazette.com, 412-263-1949 or on Twitter @MackenziePG. First Published June 2, 2014 12:10 AM

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