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Wren Vetens had no trouble getting the therapist鈥檚 recommendation letter required to start hormone therapy. She wore a dress to her first appointment. The therapist 鈥渢ook a look at me and said 鈥楥ool,鈥欌�� Vetens recalls. Getting the surgery, however, was far more complicated. (Lauren Justice for KHN)

With the country on course to enshrine the rights of transgender Americans, Wren Vetens introduced herself as a woman for the first time in January 2016, at the annual meeting of the American Astronomical Society. After being raised as a boy and grappling with her gender identity for years, it felt liberating to be referred to as 鈥渟he.鈥�

Vetens, who is now 24, began taking hormones to develop female characteristics that spring, as the Obama administration unveiled a landmark rule barring most health care providers from discriminating based on gender identity, under peril of losing federal funding.

That summer, as she prepared to start a Ph.D. program in physics at the University of Wisconsin, Wisconsin officials voted to allow transgender public employees 鈥� including graduate students who worked as teaching assistants 鈥� to obtain coverage for hormone therapies and surgery, in compliance with the Obama administration鈥檚 anti-discrimination rule.

Vetens eyed the waitlist of a respected surgeon in California, hoping to have her gender confirmation surgery as soon as the summer of 2017.

Then, with the election of President Donald Trump, policy took a U-turn, changing the landscape for trans Americans. A new crew of socially conservative government officials peeled back those protections one by one, with legal challenges and non-enforcement. The Obama administration鈥檚 rule shielding trans patients from discrimination is expected to be formally eliminated this summer.

鈥淭hat is a potentially devastating outcome for trans people in particular but for all vulnerable communities,鈥� said Jocelyn Samuels, who helped write the rule as director of the Department of Health and Human Services鈥� Office for Civil Rights under President Barack Obama.

Against that new backdrop, Wisconsin officials decided they did not have to offer coverage for transition-related hormones and procedures after all.

In a matter of months, Vetens went from picking a surgery date to worrying she wouldn鈥檛 be able to afford the surgery. Without the state insurance to cover her operation, she spent months running a financial maze of estimates, invoices, bills and demands for payment from a hospital and an insurer who didn鈥檛 know how to price or cover a relatively new procedure.

鈥淚t feels like every single part of the system had a different nefarious role in this,鈥� Vetens said.

In a matter of months, Vetens went from picking a surgery date to worrying she wouldn鈥檛 be able to afford the surgery.(Lauren Justice for KHN)

Growing Up Thinking 鈥楽omething Was Wrong鈥�

Vetens describes the distress she had felt throughout her life as 鈥減hilosophical, existential anxiety.鈥�

鈥淚t was initially the feeling that something was wrong,鈥� she said, 鈥渢he feeling that the world wasn鈥檛 real or I wasn鈥檛 real or nothing was real.鈥�

Growing up in a suburb of Salt Lake City, Vetens was bright but struggled to focus in school, enduring bullying over her small stature. Sometimes she would lash out, at age 5 punching a classmate in the vagina who said Vetens couldn鈥檛 play with the girls on the playground because she was a boy.

Like many children, she challenged gender norms, occasionally swapping swimsuits with a female friend, who also had blond hair and blue eyes, as they pretended to be each other. She knew almost nothing about what it meant to be trans, her first exposure coming when a grade-school classmate told her the pop star Michael Jackson was 鈥渁 gay, transgender pedophile.鈥�

In school, she immersed herself in the dueling worlds of science and fantasy, playing Dungeons & Dragons with her friends during lunch and working in the lab of a Nobel Prize-winning geneticist during the summer. Longing to shed the legacy of a father with whom she didn鈥檛 get along, she changed her surname to Vetens, a derivation of vetenskap, the Swedish word for science.

Vetens was at a gaming conference in 2013 when she first considered she might be transgender. Then 19, she gravitated to panel sessions that focused on being trans in the gaming community. 鈥淲hat does that say about my gender identity?鈥� she wondered.

Overwhelmed, she put the thought out of her mind until National Coming Out Day that fall, when a friend came out as non-binary, a term describing those who do not identify as exclusively male or female. Me, too, Vetens thought. She posted on Facebook, asking to be referred to as 鈥渢hey.鈥�

Dr. Kimberly Moreland (left) helped daughter Wren Vetens shop for an insurance plan that would cover Vetens鈥� gender confirmation surgery. Yet mother and daughter still found themselves caught between the hospital and the insurer.(Courtesy of Kimberly Moreland)

The news came as a shock to Dr. Kimberly Moreland, her mother, who found out about the post from Vetens鈥� sisters. She called Vetens and asked why she hadn鈥檛 told her before sharing it on Facebook. 鈥淢ama, I didn鈥檛 tell you because I knew you鈥檇 be fine with it,鈥� Vetens replied. The two had always been close.

Moreland, an OB-GYN, said Vetens 鈥� the oldest of her three children 鈥� has 鈥渆nlightened鈥� her in many ways. Still, the adjustment was difficult. More than two years after Vetens came out, they got into a heated discussion over Moreland鈥檚 occasional references to Vetens as 鈥渉e.鈥� Being misgendered 鈥渇elt like a punch in the gut,鈥� Vetens said.

The conversation turned to surgery when Moreland asked Vetens if it was something she wanted. Though she initially responded 鈥渘o,鈥� she started researching.

鈥淎s soon as I saw a picture from a modern procedure, I thought, Oh my God, I鈥檓 having this,鈥� Vetens said.

Prepping For Surgery

Vetens had no trouble getting the therapist鈥檚 recommendation letter required to start hormone therapy, while at Reed College in Portland, Ore. She wore a dress to her first appointment. The therapist 鈥渢ook a look at me and said 鈥楥ool,鈥欌�� she recalled.

Transgender individuals have a gender identity or expression that differs from the sex identified at birth. While often used interchangeably, 鈥渟ex鈥� refers to the physiological and biological traits of being male or female, while 鈥済ender鈥� refers to more socially driven traits, such as behaviors and attributes. An individual鈥檚 sense of their own gender is called gender identity; the way they communicate that to others is called gender expression.

鈥淕ender dysphoria鈥� is the diagnosis for those with 鈥渃linically significant distress鈥� due to the difference between their gender and sex, according to the American Psychiatric Association.

Vetens fit the diagnosis, and the timing of her transition meshed with an expansion of societal thinking. In 2013, the year Vetens came out, the APA鈥檚 Diagnostic and Statistical Manual of Mental Disorders 鈥済ender nonconformity is not in itself a mental disorder.鈥� Television shows like 鈥淭ransparent鈥� and 鈥淥range Is the New Black鈥� portrayed sympathetic trans characters. Former Olympian Bruce Jenner became Caitlyn.

The male-to-female surgery Vetens underwent, penile inversion vaginoplasty, is a painstaking procedure using the penile and scrotal tissue to create a vagina.

Dr. Madeline Deutsch, the medical director for transgender care at the University of California-San Francisco, said research shows hormone therapy and surgeries have been effective in improving quality of life, reducing depression and anxiety, and improving overall social functioning 鈥� results that are especially notable for a population at .

Federal Policy Upends Plans

When Vetens searched for a graduate program in string theory, a subfield of theoretical physics, she drew a line in the sand: The school had to be friendly to transgender students.

Madison seemed a welcoming place, a liberal island in a largely conservative state 鈥� but one that only narrowly tipped for Trump in the 2016 presidential election. The University of Wisconsin鈥檚 campus there has an active LGBTQ center, and the UW Health System is building a program catering to trans patients.

鈥淚 just sort of expected they鈥檙e going to be reasonable about this,鈥� Vetens said, 鈥渁nd I guess I learned a bit of a lesson about naivet茅.鈥�

Although Wisconsin had specifically excluded coverage for 鈥済ender reassignment or sexual transformation鈥� for state employees, its 11-member Group Insurance Board in July 2016 to overturn the prohibition, citing the new federal anti-discrimination rule.

When she arrived on campus that fall, Vetens was told the state health insurance plan would cover her surgery once the new policy took effect on Jan. 1, 2017.

Then came the surprise victory of Trump, who had built a campaign on rejecting Obama鈥檚 policies and embraced social conservatives like his running mate, Mike Pence. As a congressman and governor, Pence opposed protections for the LGBTQ community, including an Obama administration directive ordering schools to allow trans students to use the bathroom correlating to their gender identity.

With the national momentum shifting, Vetens was home for the holidays when she learned that she鈥檇 lost the coverage she鈥檇 counted on to pay for her operation: In a meeting almost entirely behind closed doors, the insurance board its earlier decision. The board had caved to pressure from Scott Walker, the state鈥檚 Republican governor, and his justice department, which had called the anti-discrimination rule 鈥渦nlawful鈥� before joining other states in a lawsuit against the Obama administration.

The dramatic policy swings, from the unprecedented expansion of trans rights under Obama to the unpredictable reduction of trans rights under Trump, have left many feeling the whiplash.

Two other transgender women employed by the University of Wisconsin and covered by the state health insurance plan the Group Insurance Board, the university鈥檚 board of regents and others, alleging sex discrimination based on their inability to get coverage for their procedures. The case is scheduled to go to trial in October.

Health Care Hurdles

Determined to have her long-awaited surgery, Vetens and her mother set out to buy another policy that would cover it.

鈥淲hat鈥檚 striking about it is the urgency this family felt about getting this procedure done, even without having some big questions locked down,鈥� said Katie Keith, cofounder of Out2Enroll, an organization that helps the LGBTQ community obtain health insurance, adding: 鈥淚f you don鈥檛 get it now, how long do you have to wait, and what does that do to your mental state?鈥�

Vetens researched the procedure鈥檚 price tag, estimating it would cost $19,000 to $25,000. She then secured new insurance that would cover up to $25,000, became a patient of Dr. Katherine Gast, a surgeon newly recruited by the University of Wisconsin Hospital, and scheduled the procedure during her winter break in her second year. Her insurer, Consolidated Health Plans, preapproved her operation.

Then, about two months before her surgery, a hospital billing representative called: They had run the numbers and anticipated billing her insurer about $100,000. Vetens, who makes about $20,000 a year as a teaching assistant, could have been on the hook for as much as $75,000.

The phone call triggered months of turmoil as Vetens and Moreland fought to get the hospital and her insurer to negotiate a better price for a procedure that experts say costs $20,000-$30,000 without insurance. Both hospital and insurer blamed the wide divergence in estimates on the fact that they had little experience in billing for a penile inversion vaginoplasty and didn鈥檛 know how much it should cost.

Meyer said there was no negotiated rate for that procedure. Instead, it would be priced based in part on which of about 1,000 general categories it was grouped into 鈥� likely a grouping known as 鈥渕ental health disorder with O.R. procedure,鈥� he said. The price would further be determined by expenses like operating room supplies and other factors, such as how many days of hospitalization were required.

At one point, Gast, Vetens鈥� surgeon, called Vetens and asked her to reconsider moving forward before figuring out how to pay for it, a plea Vetens described as 鈥渁 slap in the face鈥� from a critical ally who had lobbied the hospital and insurer on her behalf. It had been a difficult year, punctuated by the murder of one friend and the suicide of another, Vetens said. She was determined to have the procedure.

In frustration, a week before the scheduled surgery, Vetens and Moreland accepted a hospital offer to forgo using their insurance and 鈥� even though the insurer said it would not reimburse Vetens for that kind of outlay.

鈥淲hat鈥檚 another $20,000 of debt for me being the person that I am?鈥� Vetens said. 鈥淚f that鈥檚 the price that I have to pay to be myself, then so be it.鈥�

Vetens underwent a penile inversion vaginoplasty on Dec. 27, 2017, and is thrilled with the results. But mother and daughter 鈥� a physician and a physicist 鈥� remain stunned by the obstacles they faced, and worry about those who do not have the fortitude and resources to fight back.

Moreland , writing: 鈥淲e feel that this discrimination in billing/insurance coverage practices is specifically because [Vetens] is transgender.鈥� She pointed out that patients with no insurance would pay the same price they did and accused the insurer of treating Vetens differently than it would treat women seeking common procedures like hysterectomies.

Transgender people experience a lot of inequality in health care, Keith of Out2Enroll said. Preventive care can be hard to get, with trans women struggling to get coverage for routine prostate cancer screenings, for instance. And insurers have commonly used exclusions for transition-related treatments to justify not covering any medical care for trans patients.

Under the Obama-era rule forbidding discrimination based on gender, trans individuals who ran into trouble could file complaints to the Department of Health and Human Services, which could intercede. Now that option is off the table.

Said Vetens: 鈥淢y case is unique in that I have enough privilege to still have a happy ending.鈥�

Bram Sable-Smith of Side Effects Public Media contributed reporting.

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