When Their Doctor Disappeared, Transgender Patients Scrambled to Find Care in Pence’s Indiana

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Investigations LGBTQ

When Their Doctor Disappeared, Transgender Patients Scrambled to Find Care in Pence’s Indiana

Amy Littlefield

“I’m appearing calmer than I am. But on the inside, I’m freaking out. What if I can’t get my prescriptions renewed? What if I can’t find another doctor?”

On December 7, Lincoln Saldivar, 15, and his mother drove to his appointment with Dr. Christi Wallace in South Whitley, Indiana. Saldivar, who is transgender, was due to receive a testosterone injection and have his hormone-blocking insert replaced. Just days earlier, the office had called Saldivar’s mother, Kimberly Keener, to confirm the device had arrived.

But when they pulled into the parking lot, they found the lot empty, the lights off, and the door locked. There was no note to explain where Dr. Wallace had gone. Keener called the office; a representative told her Wallace no longer worked for Parkview Physicians Group, and referred her to another doctor in the network. When Keener explained to that new office that her son was on hormone therapy, the receptionist’s voice grew cold.

“We don’t do that here,” she said, according to Keener.

Keener called her husband, weeping, from the parking lot. She was terrified that Indiana, a state that became famous for attacks on LGBTQ people under former Gov. Mike Pence, had restricted access to hormone therapy. This wasn’t the case, but the ripple effect of Wallace’s disappearance highlights a national problem that goes beyond policy: the shortage of doctors trained and willing to care for transgender people, particularly in rural or right-wing areas, where patients frequently rely on informal networks and word-of-mouth to find care.

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“I’m appearing calmer than I am. But on the inside, I’m freaking out. What if I can’t get my prescriptions renewed? What if I can’t find another doctor?” Davina, a transgender woman and factory supervisor who was Dr. Wallace’s patient, told Rewire. She asked us not to use her last name.

The Trump administration last week made this picture immeasurably worse, moving to empower providers who turn away LGBTQ patients under the guise of religion, and opening avenues for harmful “conversion therapy” programs to receive federal funding. Even before the administration unveiled its new office to protect providers who reject trans people, finding a doctor could be daunting for these patients.

“In many communities, there could be one person … who is providing hormone therapy and the rest of the primary care for a lot of transgender people, and they may have people coming from 25 or 50 or 100 miles to see them,” Harper Jean Tobin, director of policy at the National Center for Transgender Equality (NCTE), told Rewire.

For example, the Indiana Transgender Network, which collects recommendations from patients, lists Wallace as the only doctor within 50 miles of Fort Wayne, Indiana’s second-largest city. Beyond a single medical practice about 60 miles away in Goshen, the nearest options listed are 100 or more miles from the city. The Planned Parenthood health centers in Indiana do not yet offer transition-related services, although in some states these centers are key providers of such care.

This shortage is not because such treatment is unduly complex. For the most part, trans people require the same primary care as everyone else. For hormone therapy and other transition-related care, the World Professional Association for Transgender Health (WPATH) provides standards of care and trainings.

“We really need to demystify what it means to provide trans competent care,” Cecilia Chung, senior director of strategic projects at the Transgender Law Center, told Rewire. “It’s really not rocket science.”

The landscape has shifted dramatically in recent years, but there is still a long way to go.

“It’s still a patchwork,” Jamison Green, immediate past president of WPATH, told Rewire. “We haven’t been able to educate doctors in a very uniform or consistent way.”

Indeed, many doctors lack even a basic understanding of what it means to be transgender. In an NCTE survey, a third of trans patients who had recently seen a health-care provider reported at least one negative experience related to their gender identity, including having to teach the provider about transgender people or being refused treatment. Patients of color and those with disabilities reported higher rates of negative experiences. About a quarter of trans patients had recently avoided seeing a doctor when they needed one, due to fear of mistreatment.

Facing these odds, transgender patients may go to great lengths to avoiding changing providers, even in urban or progressive areas with more options.

“We have patients who FLY here to be seen,” one provider in the Northeast wrote to Rewire, referring to trans people who moved out of state but still returned for health care.

When these providers vanish, it leaves transgender patients and their families “worried and scrambling,” Cristy, whose 13-year-old daughter is transgender, told Rewire in an email. Cristy asked us to withhold her last name to protect her daughter.

“Some of the message boards I’ve been on are quickly becoming mass hysteria,” Cristy wrote in the wake of Dr. Wallace’s disappearance. “Seriously. THAT is how difficult it can be to find a [doctor] who will treat the trans community—not just with respect and dignity, but with vital competent medical care.”

What Happened to Dr. Wallace?

A spokesperson told Rewire that Dr. Wallace left Parkview Physicians Group as of December 6, but would not say if she quit or was fired, or whether her departure was related to her treatment of transgender patients. Reached by email, Dr. Wallace’s husband said she was in the process of starting employment with a new hospital group and did not have permission to speak with Rewire.

The Human Rights Campaign, which rates health-care providers based on their policies and practices for LGBTQ patients and employees, gave Parkview Regional Medical Center, one of Parkview Health’s hospitals, a low rating: 20 out of 100. A local paper, the Journal Gazette, reported Parkview Health has refused to take a public stance on legislation to prevent anti-LGBTQ discrimination.

Parkview Health touts itself as the region’s largest employer.

“In this area, Parkview is everything,” Keener, who lives in Wabash, Indiana, told Rewire, adding that it seems like “everybody is on the Parkview network, so we have to go quite a ways to get out of the Parkview network.”

But of about 700 providers in the network, Wallace was the only one serving transgender patients, a spokesperson said last month.

“If a new provider has obtained specialized training or credentials in [transgender health] care, those are great added benefits but they don’t necessarily dictate who we identify to hire,” spokesperson Jessica Miller told Rewire.

Miller said Parkview “is really focused on meeting the needs of the communities that they serve, so primary care is obviously one of the driving factors” for hiring. But that mission apparently does not include the transgender population: Asked where Parkview is referring Wallace’s former trans patients, Miller sent Rewire a list of four WPATH members in Indiana. Only two of the people on the list were doctors, both in Indianapolis—which is 120 miles from Dr. Wallace’s office in South Whitley.

“Northeast Indiana is the most conservative part of the state, so it was really a godsend when we got somebody like Dr. Wallace in this part of the state who could provide services,” Marla Meier, a leader of the local chapter of PFLAG, an LGBTQ support group, told Rewire. “We’re all now scrambling, especially the ones with kids.”

Marla Meier, a leader of the local chapter of PFLAG, an LGBTQ support group. (Courtesy of Marla Meier)

Meier said she had learned of a local endocrinologist who would see adult patients.

“Her office is getting a flood of calls right now,” Meier said. “We all know each other in the community, so word spreads quickly about things like this.”

Parkview’s Miller acknowledged receptionists mistakenly referred several of Dr. Wallace’s patients—including Keener and Cristy—to a Parkview doctor who Miller said “is not certified to provide transgender care.” When Cristy called that office, she said the receptionist told her Parkview was no longer providing care for “transgenderism,” and refused to give her a referral.

“Going to have a cry now,” Cristy wrote to Rewire in an email.

“Waiting to Hear That There Was Somebody”

Cristy developed a strategy to shield her transgender daughter, Lauren, from rejection by therapists and medical providers. She would book an appointment for herself, then go to the office, alone, and broach the topic of her daughter’s care. Most providers were not outwardly hateful, but they knew little about caring for trans patients. The pediatrician whom Lauren had seen since she was born was willing to care for her, but not to offer transition-related care.

One doctor refused to see Lauren outright. “She did not want to accept my daughter as a patient whatsoever, [even] for a sore throat,” Cristy told Rewire in an interview.

Lauren, now 13, has always known that she was a girl.

“She used to fall asleep at night, just crying in panic .…Was she going to grow up and have a man face and grow a beard?” Cristy told Rewire in an interview.

“‘What am I going to do, Mommy?’” Lauren would ask. “I didn’t know everything then, but I’m like, ‘I think maybe we could find some medicine for you to take,’” Cristy said.

The summer before she started kindergarten, Lauren socially transitioned, meaning that she began using female pronouns and living as a girl, without any medical intervention. Immediately, Cristy said, her depression and anxiety vanished.

“When you have a suicidal 5 year old, it tends to make you listen,” Cristy wrote to Rewire in a follow-up email. “Receiving affirming medical care saves lives.”

Data support this conclusion. In the NCTE survey, 37 percent of trans people with supportive families had attempted suicide versus 54 percent of those with unsupportive families. (That didn’t stop the U.S. Conference of Catholic Bishops, which issues directives that govern health care for one in six acute-care hospital beds nationwide, from publishing a letter last month that effectively encourages parents to reject their transgender children and to deny them access to gender-affirming care.)

Cristy didn’t just support Lauren; she became an expert on her care. She researched online and consulted other parents and psychiatrists. When she learned Lauren might eventually need reversible hormone blockers to delay puberty and give her more time to be sure of her transition, Cristy canvassed the region for a provider. She found a program in Chicago, but it was a two-hour drive from their home in Elkhart.

Then an offer of help came from an unexpected place: The midwife who had helped deliver Lauren, Katie Bast, was training to be a family medicine doctor in South Bend. She told Cristy that she would get the information she needed to help Lauren. Bast began consulting experts and attending conferences.

Cristy was used to educating providers, but soon, Bast was telling Cristy what Lauren needed.

“It was a huge weight off,” Cristy said.

After that, word spread fast.

“I was surprised at how many trans patients were just waiting to hear that there was somebody,” Bast told Rewire.

By the time she graduated residency in 2016, Bast had gone from one transgender patient to 80. Many of them were traveling two or three hours to see her.

A Place to Come for Care

About a week after she graduated residency, Katie Bast and her partner, Mixhi Marquis, opened Mosaic Health and Healing Arts in Goshen, Indiana—about 30 miles from South Bend—to give those patients a place for continued care. They believe it’s the first family medicine practice in the state to openly welcome LGBTQ people. Mosaic is a full-scope family practice that sees children, adults, and Amish psychiatric patients; Oaklawn, where Mosaic is located, is a mental health facility.

After Dr. Wallace’s unexpected disappearance, Mosaic received about 25 calls from her patients. Bast and Mosaic’s nurse practitioner, Erin Flynn, extended the center’s hours to accommodate those patients from the Fort Wayne area, about 60 miles away.

Other patients come from as far away as the Kentucky border, driving upwards of five hours.

Grace Lidinsky-Smith*, a 23-year-old who lives in Bloomington, told Rewire the treatment she gets at Mosaic makes the 400-mile round trip worth it. She said she once tried to explain her identity to a doctor, who seemed not to understand and misgendered her. Mosaic providers used the correct pronouns and shared her joy as she began hormone therapy.

“It was great having a nurse and doctors who are respectful and celebratory of the process of starting on that journey,” Lidinsky-Smith said.

Bast fields calls from pharmacists confused about hormone therapy, writes letters to recommend gender-affirming surgery and name and gender marker changes, and advocates for coverage of transition-related care with insurance companies.

Nationwide, such coverage is an ongoing battle. A quarter of trans patients who sought coverage of hormone therapy in the year before the NCTE survey were denied. A third said there was at least one time in the past year when they needed to see a provider but did not, due to cost.

Mosaic offers a sliding pay scale for uninsured patients.

Rickie LeDuc attended support groups run by Bast and Marquis. (Courtesy Rickie LeDuc)

Marquis and Bast care for the whole patient, addressing spiritual and emotional health. They refer patients seeking religious community to LGBTQ-affirming pastors, including within the area’s sizable Mennonite and Brethren communities. Marquis practices Reiki, massage, and spiritual counseling. They also host support groups for transgender and nonbinary people. One of these groups meant everything to Rickie LeDuc, who began her transition during a roiling moment for LGBTQ rights in Indiana.

“It Was More About Survival Than Courage”

In March 2015, the state legislature passed a so-called religious freedom law that enabled people and businesses to discriminate against LGBTQ people under the guise of faith. Then-Gov. Pence signed the bill in a private ceremony, surrounded by anti-LGTBQ extremists, monks, and nuns. The move sparked nationwide protest, spurring condemnation from corporate leaders, and forcing Pence to sign a “fix” blunting the law’s discriminatory impact.

Pence’s approval ratings tanked in the aftermath; he may have lost his reelection bid if Trump hadn’t tapped him as running mate and plucked him from the wreckage.

Around the time the bill was introduced, LeDuc, who lives in the small town of Middlebury, in Amish country, had reached the point where transitioning felt like a question of survival.

“For me it was just kind of like a matter of life or death, even though it might have been more of an internal death, a slow prolonged death,” LeDuc told Rewire in an interview. “I think it was more about survival than courage, but it took some courage.”

LeDuc, who works as a forklift operator and sells three-dimensional models in the online virtual world Second Life, had tried to live openly as a woman when she was 25. After it became too difficult, she told herself she would transition by age 30. Then the years rolled by.

“Before you knew it, I was 40 years old and it was clear to me there was never going to be an easy time or the right time,” LeDuc, now 43, told Rewire. “I basically had to make a decision, right then and there: Either I have to accept that it’s never going to happen, and go on about my life and just deal with that, or I had to do something right now, today.”

So LeDuc called a therapist, who directed her to a support group run by Bast and Marquis in the back of a restaurant in downtown Goshen. It wasn’t an easy time to come out. The political moment fueled LeDuc’s anxiety. But at the meetings, she felt accepted and normal.

“Without that support system, I don’t think that I would have got off the ground at all,” LeDuc told Rewire. “I mean, it’s everything.”

Cristy describes Mosaic in similar terms.

“It means everything; it’s a lifeline,” she said. “It’s hard to explain to someone who doesn’t live here but—it’s Mike Pence’s Indiana.”

Cristy and her daughter moved to Fort Wayne a few years ago and started seeing Dr. Wallace. Unless Wallace reappears, Cristy will drive Lauren an hour and a half next month to Goshen—to visit Mosaic and the provider who, 13 years ago, helped bring Lauren into the world.

Bast is looking forward to the visit.

“Lauren has taught me an incredible amount and opened up the world to me,” Bast told Rewire. “Without Lauren I wouldn’t be doing trans care … Lauren was the first one to help me open up [and] see the world as more than binary.”

Things have come full circle, in a way. By treating trans patients like Lauren, Bast feels as if she has returned to her work as a midwife.

“What’s become clear to me is that I’m still doing midwifery, except I’m helping people give birth to themselves,” Bast said. “And that feels absolutely right to me.”

*Lidinsky-Smith’s name and pronouns have been updated at her request to reflect that she has since detransitioned.

For more on Bast and Marquis, and a video tour of Mosaic, see our companion profile