'I feel alive': Transgender Iowans on medical care, surgeries

DAVENPORT, Ia. — Aiden DeLathower began tending the fire pit in his backyard, hours before the sun dipped below the horizon. Restless with a mixture of excitement and anxiety, he paced around the flames like a kid waiting for Christmas morning, nervously poking embers and adding new logs.

Soon, the afternoon’s blue sky gave way to a pink-streaked dusk and eventually faded to night's deep black. Finally, it was time for the evening’s main event: a bra burning.

Six weeks earlier, DeLathower, a transgender man, had his breasts removed. Now, free from “his chains,” he wanted to put life as a woman behind him. So with the encouragement of friends, DeLathower, 48, held a handful of brassieres over the flames.

“These have trapped me for 48 years,” he said, his voice catching. “Forty-eight years of shame and misery.”

DeLathower dropped in the intimates to ebullient cheers. As the fabric popped and crackled in the heat, he whispered, “Let them burn.”

DeLathower is one of a growing number of transgender people seeking medical care they believe is needed to make their body match their brain, experts said. But for many gender nonconforming people, health care can be difficult to access. Obstacles include a lack of specialized services, exclusions in private or public insurance coverage or the high price of full medical transition, which The Philadelphia Center for Transgender Surgery estimated could cost more than $100,000.

As transgender people begin to feel more comfortable coming out and living as the gender with which they’ve always identified, they are facing a “patchwork of rampant discrimination amid pockets of progress” in the health care industry, said Harper Jean Tobin, the National Center for Transgender Equality’s policy director.

“Despite having always been here, transgender people have been mostly invisible in society until recently,” Jean Tobin said. “So there is this popular perception that medical treatment needed to alleviate gender dysphoria isn’t real health care. The medical community has resoundingly rejected that perception, but it persists.”

Des Moines-based Dr. Joseph Freund describes hormone replacement therapy, counseling and surgeries as "lifesaving" medical treatments. All three can ease the stress, anguish and suicidal thoughts associated with gender dysphoria, the condition where one’s internal sense of gender conflicts with one's birth sex, he said.

In Iowa, health care resources for transgender people are slowly growing. In January, Cedar Rapids’ Planned Parenthood location will begin offering transgender care, and the University of Iowa’s award-winning LGBTQ clinic hopes to continuously add services, including possibly gender-confirming genital surgery. Yet “culturally competent” doctors are found most often in cities, leaving large swaths of the state where transgender Iowans can’t access needed care, said Freund, whose gender variant patients drive hours from all over the state.

And, unlike some neighboring Midwestern states, Iowa does not prohibit private insurance companies from excluding transgender care. In fact, the state’s Medicaid administrative code features a blanket exclusion on “surgeries for the purpose of sex reassignment,” classifying them as "cosmetic, reconstructive, or plastic surgery."

LGBTQ clinic at the University of Iowa offers 'relief'

Most major medical associations have denied that these treatments are cosmetic or experimental, and have affirmed that such interventions can be medically necessary. Some physicians and socially conservative groups, like the Family Research Council, disagree, cautioning “that all people have a biological sex, identifiable at birth and immutable through life.” The Family Leader, an Iowa-based Christian organization, agrees with the council’s sentiment.

“While The Family Leader recognizes with compassion the difficulty of struggling with gender dysphoria, we do not believe affirming that dysphoria as reality is beneficial or healing,” said Drew Zahn, the organization’s spokesperson. “Neither can we commend chemical treatments or surgically altering someone’s body in the effort to artificially conform reality to match their internal feelings or desires.”

As the 2016 election moves into the rear-view, President-elect Donald Trump's administration and Republican control of both houses of Congress could bring sweeping changes to health care. The federal Affordable Care Act, which Trump has called “terrible legislation,” offered for the first time clear regulations stating, “Individuals cannot be denied health care or health coverage based on their sex, including their gender identity.”

Medical resources for transgender Iowans

If Trump were to “immediately deliver a full repeal of Obamacare,” as his website promises, advocates, doctors and lawyers worry transgender Americans may lose health care and be at risk for discrimination. Trump alone cannot repeal the Affordable Care Act, but with Republicans controlling Congress, he could find support for action needed to replace Obamacare.

“When we think about all the protections that come through the ACA, it is pretty scary thinking about those protections disappearing,” said Naomi Goldberg, policy and research director at Movement Advancement Project, an LGBT-focused think tank. “We would be rolling back to state protections and, in that case, transgender people are facing an incredible medley of laws.”

All those concerns seemed worlds away as friends hooted, hollered and poured champagne in DeLathower’s backyard.

For DeLathower, like many other transgender people experiencing life after surgery, the party marked a death and a rebirth — and in both cases it was a cause for celebration.

Stirring his melting bras with a stick, DeLathower laughed, “They’re French-fried.”

He paused, sighing, “And I’m free.”

'Simply who they are’

For as long as DeLathower can remember, he never felt right in his skin. He always liked traditionally boys' toys and clothes, but he believes the knowledge that he is male is deeper than playthings; it is innate.

“Pretty much my whole life I hated myself,” he said. “I was very self-destructive. I would cut. I would try to take pills to overdose. I was always angry.”

DeLathower's masculine feelings lingered for decades, always just under the surface. Then, one night last winter while watching Ruby Rose on “Orange Is the New Black,” something clicked. Rose, an actress, is known for her gender fluidity and androgynous look.

“Knowing how many people were accepting of the fact that she could look like a male or a female,” DeLathower said, “it was just like, wow, maybe I can really do this and be accepted for me. Finally.”

Most of the more than 45 transgender Iowans interviewed by The Des Moines Register have said their gender identity was apparent from their earliest memories.

Brains are gendered at birth, said Dr. Nicole Nisly of the University of Iowa’s LGBTQ Clinic, and in the case of transgender people, their brains are gendered differently from what their physical sex characteristics show, she said.

“They didn’t choose that; it’s simply who they are,” Nisly said. “It’s no different than being left-handed or having red hair. And when people are given the correct treatments — hormones, possibly surgery — they immediately regain a sense of hope, a sense of life."

For transgender people, going to a doctor's offers unique challenges that can quickly turn a regular checkup into a "terrifying experience," Jean Tobin said.

“Lots of people are nervous to talk about private things or have invasive physical exams," Jean Tobin said, "but all of that is heightened for transgender people because there’s a greater chance they won’t be accepted or the doctor won’t understand their needs or they will be humiliated.”

Respondents to the National Center for Transgender Equality’s just-released Transgender Survey reported encountering “high levels of mistreatment when seeking health care.” More than one-third of respondents said they have had at least one negative experience with a health care provider due to being transgender, and a quarter said they didn’t seek health care because of the “fear of being mistreated as a transgender person.”

Nisly has seen that fear firsthand in some of her new patients, she said.

“It’s not uncommon that we have patients who come in who have been so mistreated previously that they are literally shaking and in tears and completely scared,” she said.

For DeLathower, having a doctor put a name to what he’s always felt was freeing, but, as a deeply Christian man, he felt he needed divine providence to move forward. DeLathower picked up his first shot of testosterone in early February, but waited to administer it.

“One afternoon, I was laying down on my bed and I was praying and I kept saying (to God), ‘You know my heart,’ and I was bawling,” he said. “Then it just kind of flooded me, like a calm, a peace, like someone saying, ‘It’s OK.’

“So I went into the other room and told my wife it was time to take the shot.”

'Safe, effective treatments'

The night before DeLathower’s surgery, he was nervous. Pacing back and forth in his hotel room, he told his wife he was scared of the “unknown,” but he had to get rid of “the chains” that have kept him a prisoner in his body.

“I’m scared of what it’s going to look like,” he said in a video diary. “I know I’m going to have scars, and I just need to look at those scars as my battle wounds.”

By the next morning, he was “stoked,” cracking jokes with his surgeon, Dr. Clifford King of Madison, Wisconsin, whom DeLathower chose for his expertise in mastectomy, commonly known as “top surgery” in LGBT circles.

“I haven’t been able to fully embrace being Aiden with these,” DeLathower told King. “So I’ll be a lot better when these things are gone.”

Many individuals and organizations in the medical community, including the American Medical Association and the American Academy of Family Physicians, agree that surgical intervention can be a medically necessary treatment for gender dysphoria when deemed appropriate by provider and patient.

“We at the (American Medical Association) forcefully and will continue to forcefully reject the myth that these treatments, including surgeries, are cosmetic and experimental,” said Dr. Jesse M. Ehrenfeld, director of Vanderbilt University’s Program for LGBTI Health, focused on lesbian, gay, bisexual, transgender and intersex patients. “Rather there is a large and established body of research that these can be important, safe, effective treatments for what is a health condition.”

Some others in the health care and faith communities disagree, including the American College of Pediatricians, a small group of socially conservative doctors who have said that "human sexuality is an objective biological trait" and have characterized transgender people's medical transition "as a lifetime of carcinogenic and otherwise toxic cross-sex hormones" and "unnecessary surgical mutilation of their healthy body parts." The American College of Pediatricians, which the Southern Poverty Law Center deems a "hate group," is different from the American Academy of Pediatricians, which has issued guidelines stating "transgender adolescents need to be supported and affirmed."

Although studies into transgender health care are still in their infancy, Nisly said, “this is in no way new science.” Johns Hopkins Hospital in Baltimore, Maryland, opened a gender identity clinic in the late 1960s and, soon after, began performing gender confirmation surgery. That program shuttered in 1979, but since its founding, more than 40 specialty clinics have popped up nationwide and are conducting research and providing care, according to the Washington Post.

TRANS IN IOWA: See full coverage of transgender issues in Iowa

Three weeks after surgery, DeLathower drove to the LGBTQ clinic in Iowa City for an appointment with Nisly, whom he’s seen since early spring.

Nurse Nancy Dole, a favorite of patients, walked in first to update his charts.

“Wow,” she gasped, clutching her reading glasses. “You look so different! You look so happy!”

“Want to see?” DeLathower asked, tugging at his shirt with a sly grin.

“Oh, yes,” she said, clapping as DeLathower revealed his chest. “I love it when people flash me!”

Payment can be 'nightmare'

DeLathower qualifies for Medicaid, publicly funded health insurance, because he is unable to work due to various health problems as well as needing to take care of his wife, Tammi, who has multiple sclerosis. They are both in the process of filing for disability.

Medicaid covers DeLathower’s hormones, he said, and his mastectomy would have been approved if completed in Iowa due, in part, to how he requested the surgery be coded when it was submitted. After much research, DeLathower chose to go with King in Wisconsin and paid for the about $9,300 surgery using a high-interest, health care-focused Care Credit card, which insurance doesn’t subsidize. DeLathower estimates his transition has cost about $30,000 so far.

Many visiting Iowa City's LGBTQ clinic will not be as lucky as DeLathower when it comes to coverage, said Nisly. Invariably, her team will spend hours dealing with “a nightmare of paperwork” for her patients to gain coverage.

“We have nursing assistants and a pharmacist who are capable of knowledgeably dealing with insurance companies," Nisly said. "We have law professors who have advised us. We call people, we write letters, and we go to the top level of insurance companies, and we’re still denied.”

Unlike Minnesota, Illinois and Michigan, Iowa doesn’t have a law prohibiting private insurers from excluding care for gender dysphoria treatments. The Family Leader would be against “the government penalizing private insurers for refusing to cover medical transition services,” but some in the transgender community would like to see similar legislation passed in Iowa.

However, passing such a bill will be “very difficult under Republican control,” said state Sen. Matt McCoy, D-Des Moines.

“When you have a whole group excluded from medically necessary care, that’s clear discrimination,” he said. “Frankly, it’s dangerous, and it will continue to stand as I do not see anyone who’s capable of convincing Republicans that this medical care is necessary.”

Asked about potential support for removing the Medicaid ban or prohibiting exclusions in private insurance, spokesman Ben Hammes told the Register that neither Gov. Terry Branstad nor Lt. Gov. Kim Reynolds would discuss the issue without “seeing legislation.”

TRANS IN IOWA: Hear stories from other transgender Iowans

As of Jan. 1, a nondiscrimination clause in the Affordable Care Act will go into effect that covers any health program administrated by the federal government, receiving federal funding or offered on the marketplace. That clause may nullify a possible challenge to Iowa Medicaid’s exclusion of transgender care. Simply, the federal regulation would trump state statutes, said Jennifer Pizer, law and policy director at Lambda Legal, an LGBT-focused nonprofit.

But advocates worry about the new administration's possible changes to the ACA, which has been used to “a great deal of success” in helping transgender patients get care, said Camilla Taylor, senior counsel with Lambda Legal.

“The ACA’s discrimination prohibitions are a crucial aspect of our work to defend trans patients," Taylor said, "and, obviously, all of that is vulnerable as a result of the election."

“It’s hard now to know what the future holds.”

Feeling ‘alive again’

After the bras were successfully “French fried,” DeLathower and his friends retired to the patio for more champagne. But Tammi lingered, staring into the fire.

“I’m so thankful he was actually able to take this step in his journey,” she said. “He’ll never, ever have to look at those and feel constricted within himself like that ever again.”

He’s back to the person she married, she said, accentuating person. For years, DeLathower told her of his masculine feelings, so the idea that he may eventually want to transition didn't come out of nowhere, she said.

“When we first got together, I told him I fell in love with him,” she said. “It didn’t matter if he was a male or a female, I fell in love with him and his heart.”

The health care industry has a long way to go beyond changes in insurance coverage to reach full equality for transgender people, many experts and advocates said. More resources, including therapists and counselors specializing in gender dysphoria, are required to meet a growing need across the country, Jean Tobin said.

But the first step is education, she added.

Advocates would "like to see culturally competent education included in health care training for doctors as well as nurses, emergency room staff and front desk workers,” Jean Tobin said. The goal is to "create an environment that’s holistically transgender-friendly and doesn’t deter people from seeking treatment.”

DeLathower hopes to become a resource for transgender people in the Quad Cities, and will speak to students at his high school alma mater in January.

As he patted down embers and bra remnants, the fire illuminated DeLathower’s many tattoos. In an effort to take back his body when he was younger and still living as a woman, DeLathower used his skin as a canvas for artwork.

Looping around a detailed lighthouse, one tattoo’s whirling script reads, “All who wander are not lost.” It’s his mantra, DeLathower said, and a reminder that even after surgery, he’s still finding himself, still searching for what’s next.

With his chest surgery complete, DeLathower said he's experiencing genital dysphoria and is planning to consult with a doctor about possible procedures. Bottom surgery — as genital confirmation surgery is commonly known — can be risky for people his age, he said, and is expensive, with costs estimated at more than $20,000. But DeLathower said he desperately wants to "feel complete."

“Some days I’m so happy,” he said, “and others I feel like a freak because I feel like from my mid-section up I’m a man, but from mid-section down I’m a woman with hairy legs.

“But I don’t hate myself anymore,” he continued. “I don’t have any desire to hurt myself anymore. I feel free. I feel alive again. I feel like I can actually be the person that was inside of me all along.”

Like the semicolon tattooed on his wrist, DeLathower knows surgery wasn’t an end, but rather a short stopover on the long road of his transition.

That’s OK, he said, transition is a path he’s waited his whole life to wander.

Coverage to continue

This is the sixth and final piece of the Register’s Trans in Iowa series, which explored the lives of transgender Iowans.

Throughout the series, the Register has looked at the triumphs and challenges the transgender community has experienced in Iowa. First, the series explored the legal challenges facing transgender Iowans by telling the story of Des Moines' first transgender teacher. The Register then charted the concerns of transgender youth and transgender athletes. And, most recently, the series looked at the extreme fear some transgender people have when coming out at the office. 

These issues related to the transgender community will continue to be covered as news arises. In the meantime, please read and share the rest of the series at DesMoinesRegister.com/transiowa. 

Share your story

The Des Moines Register invites readers to share stories of transition in their own lives. We hope to hear from a diverse array of people to show the full scope of the recent triumphs of the transgender community and the challenges it faces.

You are welcome to submit your video testimonial or written response to ccrowder@dmreg.com.

Or tell us your story on social media by using #transiowa.

Courtney Crowder can be reached at 515-284-8360 or ccrowder@dmreg.com.