Finding wholeness: What trans-affirming care looks like in the Triad

A mother’s voice breaks as she sits at her desk on her lunch break in a government building in Forsyth County.

“This is serious,” she says. “This is life or death. He needs it. If I have to pay for it, I’m going to pay for it. I’m going to help him be the most complete human he can be.”

This mother, who asked that her name not be shared to protect the privacy of her teenager in transition, shared that her family moved from a neighboring rural county to Forsyth to find a more open environment. A former missionary and religious conservative, she was driven to support her child by finding the right care. Having already come out as gay in middle school, she shares she wasn’t as shocked as she could have been when her child told her he was transgender in high school.

“Thankfully, I didn’t react,” the mother tells Triad City Beat. “I just said ‘How can we help you? How can we work on this?’”

At the center of gender-affirming medicine is heartening reassurance and support. For transgender individuals, therapists and physicians can be a source of validation that they don’t get in the places like houses of worship or within their families. And in the wake of dozens of legal attacks on transgender rights across the country, parents, community members and trans individuals themselves are fighting for their rights within the Triad.

A maze of resources

On an early spring day, Thomas Livengood sat in the driver’s seat of the family SUV as his child sat next to him. After months of taking trips back and forth to school, doctor’s appointments and mental health providers in search of a reason behind the teenager’s anxiety and depression, the car had become a safe space for them to talk.

“I have something to tell you, but I don’t know how to say it,” his child said.

“Tell me kid, but it’s your choice to tell me or not,” Thomas replied. “This is safe zone — we can talk about anything here, you know that.”

“Umm. Dad, I think I might be transgender.”

For Livengood, hearing his child say those words following a regular visit with their psychiatrist was a beautiful relief. After years of working with mental health professionals to address a cascade of challenges: transitioning schools, finding counseling and seeking support from their pediatrician, his child was finally able to find the words to express it.

“Up until then, we were still talking about the problems with executive functioning and anxiety, but not the cause,” he said during a January presentation at a Parents and Friends of Lesbians and Gays (PFLAG) event.

There would be other battles in the years to come. Livengood and his family had to move from their longtime church home after a member of the youth group stood up and asked that they pray for protection against the “LGBTQ+ influence in schools”. Already in the midst of hormone therapy and counseling, it was a major blow to the family.

For families with transgender children, gender-affirming healthcare is a complex maze of providers and resources. Getting to this kind of front-seat revelation isn’t the starting point for many families; they’ve already been working for years. Oftentimes, there’s a winding and frustrating series of misaligned diagnoses, confused emotions and deeply engrained societal roadblocks that stall the process and delay transgender youth and adults from arriving at this first step.

According to a 2019 study by the Campaign for Southern Equality, 41 percent of trans respondents in North Carolina report being mistreated by healthcare professionals. Close to half reported having to educate their care providers about their identity.

A decade ago, transgender individuals had to make the trek to Chapel Hill, Charlotte, or Winston-Salem to gain access to basic affirming care, much less the surgical procedures that don’t come until late in transition. The distance was brutal for many members of the population, particularly in marginalized communities where access to transportation is lower.

However, things are changing slowly. For the last several years, Wake Forest University has hosted the annual Southern Trans Health and Wellness Conference which focuses on enriching local partnerships and developing clinical skills to further support gender-expansive communities. New offerings in both private practice and in more local hospitals across the Triad are giving more people a way to get the care they need to find the peace they deserve.

Dr. Eva Shaw of Kalos Comprehensive Care in Greensboro, who focuses specifically on transgender and affirming care, is clear about her role in the lives of her patients.

“I get to be a very joyful part of medicine,” she said. “I get to give people things that are good for them that are going to lead to their long term and improved mental and physical health.”

After working as a primary care physician for almost a decade, Dr. Shaw pivoted to a focus on gender non-conforming patients. There was an immediate need at the time, after the only dedicated provider in Greensboro retired. Her work is holistic in nature.

“When people feel good about their bodies, they are much more likely to take care of their bodies,” she said.

What transition care looks like in the Triad

Common misnomers about transition-related healthcare are that it’s primarily for children and that surgical transition is at the center of the process. In reality, gender-affirming healthcare can begin at any age, and often does. Care always starts with mental health support, which is then followed by years of low risk and mostly reversible hormone treatment. Surgery is the most dramatic step, but it doesn’t happen until late in the process, after an individual has had years to process and make that decision.

The World Professional Association for Transgender Health (WPATH) provides doctors with guidelines for treating gender-nonconforming patients. Their recommendations, which are standard practice across the field, including in North Carolina, recommend holding off on surgical changes until a child reaches the age of consent. WPATH recommends that adults seeking gender reassignment surgeries be on hormone therapy for at least twelve months prior to the procedures.

At Kalos, children who identify as gender non-conforming go through an extended process. There’s an initial visit with the child and their parents, then a visit without the parents present, according to Dr. Shaw. Kalos works with an outside support network of therapists to provide mental health support. Often times, such as with Livengood’s child, gender non-conforming children are already under the care of mental health professionals by the time they seek gender-affirming medical care.

Dr. Shaw begins seeing patients for puberty blockers as early as age 10, when adolescent bodies begin to change. There’s a series of baseline bloodwork and discussion about possible side effects. Children are monitored for calcium loss and sometimes given supplements of vitamin D and calcium to ensure their bones will be strong later in life. 

For children, puberty blockers are a way to buy time. The process brings massive changes in secondary gender characteristics like body hair and breast growth, which can be confusing for children who have a mismatch between the gender they feel and the gender their bodies express. In the long term, puberty blockers can prevent the need for surgery in the future, as well as reduce the level of hormones needed for transgender adults. Timing is important, as it takes several months to get insurance to authorize any kind of medication, and puberty blockers only work when kids start them before puberty is in full swing. The insurance process goes faster when a child is already under the care of a therapist or psychiatrist.

On the other end of the spectrum, it’s not uncommon for Dr. Shaw to begin hormone treatment with people in their fifties and sixties, though the bulk of her work is with adults who are younger. In the past, WPATH advised that those seeking hormone therapy had to live as that gender for a year. Those guidelines changed as it became clear that social transitioning was unreasonable for patients who still bore the physical characteristics of their gender assigned at birth. Now, a letter from a behavioral health provider, along with informed consent, is enough for people over the age of 18 to begin treatment. Adults sometimes begin hormone treatment on their first visit if they have been waiting for a long time and have worked with a mental health professional previously.

According to specialists, both the short-term and long-term physical risks are minimal for both puberty blockers and hormone therapy, where the mental health benefits are tremendous. A 2019 study on transgender teens published in the journal Clinical Practice in Pediatric Psychology found that almost 50 percent of teens had suicidal tendencies before starting hormone therapy. After the start of treatment, that number plummeted to 12 percent.

Medically, the biggest long-term impact of hormone therapy is on fertility. Patients at Kalos are counseled through methods to preserve fertility, such as freezing eggs or sperm for the future. Allergic reactions are another real possibility, but there are now multiple options for implanted puberty blockers, time-release hormones, twice-monthly hormone injections, or daily oral medication.

“Parents, guardians, and providers feel that we are helping adolescents with that choice,” Dr. Shaw tells TCB. “We take that with a lot of weight, oftentimes with much more importance than the kid wishes.”

Patients might try several different combinations of hormones to get the desired effects and ease any adverse symptoms like mood or weight change. Once they find what works for them, patients only see their care providers twice a year unless issues arise.

The mother of the Forsyth teen in transition talked with her son about options for his testosterone injections. He could do it in the office of the endocrinologist every two weeks, his father could do it, or he could do it himself. He chose to do it himself.

“This kid is fiercely independent,” she said.

Currently, surgical options for gender-affirming procedures are available in Chapel Hill, Winston-Salem, Durham and Charlotte. The risks of surgeries are similar to those risks associated with any surgery, such as blood loss, infection during healing and complications with anesthesia. Most surgical options are available through providers of plastic surgery.

Barriers to treatment

Currently, one of the biggest barriers to receiving gender-affirming care is the cost. Surgery costs tens of thousands of dollars and is only covered by some insurance companies. Transgender individuals sometimes save money for years to pay for the procedures. Flex Jonez, chair of the Greensboro Transgender Task Force, has worked with college students in the Triad who took out student loans to cover the cost. College students can sometimes get coverage for hormone therapy and counseling through their university health insurance, and that can be the first time they’re able to access affirming care. The wealth of universities in the area means that transgender students leaving home for the first time are finally able to be themselves in the Triad.

Vital mental health services for transgender individuals are generally covered by insurance, though copays can add onto the financial burden. The Forsyth mother whose son is in transition shares that therapy isn’t just for her transgender child, either.

“Everyone in the family has their own therapist,” she said.

Her health plan with BCBS currently waives copays for mental health visits, lessening her family’s financial burden.

Still, many patients lack access to health insurance at all which creates a significant racial disparity in the Triad in trans-affirming care according to Jonez. He calls this the “world of separatism” when dealing with health and wellness.

Prior to the Affordable Care Act (ACA), many trans people couldn’t afford housing or basic medical care, much less gender-affirming medical care. Lower insurance costs with the ACA, along with free and sliding scale services, have increased access to marginalized populations in the area, but it’s been a long road. HIV rates are high in the transgender community in the Triad, making gender-affirming care all the more complex. And finding the right resources can be difficult when dealing with discrimination both at home and in the workplace. According to the National Center for Transgender Equality, more than one in four transgender people in the United States have lost a job to workplace bias.

Finding care providers of color is another important point, especially for children in those communities because the ability to connect with providers that look like them significantly increases trust and connection, leading to more adherence to treatment and better outcomes. One local family finally found a Black therapist to work with their child in transition, but they had to go to the Triangle to see them. United Healthcare Center in Winston-Salem offers affirming services to people of color and is both aware and accommodating according to Jonez.

How North Carolina law affects gender-affirming care

Over the last few years, there has been an increase in young people who identify as gender non-conforming and have begun seeking treatment. Gender has become a more integrated part of the adolescent process than it was in the past, and young people are more likely to have non-traditional gender expression overall, according to Dr. Shaw.

“I’m seeing a huge increase in the number of adolescents who are identifying as non-cisgender and are able to verbalize that,” she said. “More young people feel comfortable telling their parent or guardian about their identity and seeking care for that.”

While the data is not clear due to privacy regulations and binary reporting measures, the Williams Institute at UCLA estimates that just under 5,000 young people ages 13-17 identified as transgender across North Carolina in 2020. Overall, there are roughly 50,000 people who identify as transgender in the state.

And this increase in visibility has come at a cost. Across the country, there has been a wave of anti-transgender bills filed in recent months.

In February of this year, Texas governor Greg Abbott instructed Child Protective Services in his state to investigate parents of children in gender affirming care for child abuse. Those investigations are currently on hold until the Texas Supreme Court makes a final decision. Alabama and Arkansas have both outlawed trans healthcare for minors. In Alabama, it’s now a felony for a doctor to administer puberty blockers or hormone therapy to trans youth. The Department of Health in Florida recently released a memo recommending doctors to not offer affirming care to minors.

In April of 2021, NC Republicans proposed Senate Bill 514, known as the “Youth Health Protection Act.” If passed, it would have made it illegal to provide trans-affirming care to anyone under the age of 21. The ban would have included puberty blockers, hormone therapy and affirming surgery, as well as imposing fines and supporting controversial “conversion therapy.” SB514 didn’t make it out of committee for a vote on the floor of the NC House, but Republicans across the country continue to introduce similar pieces of legislation.  

Just this week, Yale Law School released a major report analyzing misleading texts in the Alabama law and Texas legal action. It found that missives targeting gender-affirming medical care for transgender children and adolescents present a “warped picture” of medical evidence. This includes false claims about sterilization, exaggerated risks of drug therapy and a complete dismissal of the positive effects of gender-affirming care for young people.

Currently in North Carolina, state employee health coverage does not pay for gender-affirming care in beneficiaries. That includes the family of the Forsyth teenager in transition, whose endocrinology coverage is set to stop this month. In January, the U.S. Supreme Court refused to hear an appeal from the North Carolina State Health Plan for Teachers and State Employees that would stop Kadel v. Folwell, a lawsuit filed against the state that alleges this policy is in violation of the Affordable Care Act. Pending the outcome of that lawsuit, families are forced to pay the full cost of care out of pocket for endocrinologists and surgical interventions.

When parents disagree on gender-affirming medical procedures, children who already face societal bias get caught in the middle. In North Carolina, custody contentions revert back to what’s in the “best interest of the child.” Mental health professionals and doctors then become the guiding force in what the child needs in terms of gender-affirming care, though the ultimate decision is up to the judge. 

Social transitioning, including gender changes on documentation, is another essential part of codifying identity. In North Carolina, it’s possible to change the gender marker on a driver’s license without medical documentation. To change the gender marker on a birth certificate, an adult must show proof to the state that they have had gender reassignment surgery. For many people, surgery either isn’t appropriate or isn’t medically possible due to potential health risks associated with major surgery. A lawsuit filed in November of last year by Lambda Legal is attempting to overturn this policy. Campos v. Cohen is being heard in the Middle District Court of North Carolina, but no trial date has been set for the case.

A mission to live in peace

Both transgender individuals and the families who love them say that transitioning is about finding a way to lead a life that is whole and happy.

Flex Jonez is open about his own experience with gender-affirming care, both personally and as a leader in North Carolina in the last three decades.

“My journey has allowed me to live in peace,” he said. “Once I advocated for myself, I advocated for others.”

This sentiment was echoed again and again in conversations TCB had with families. At the end of the day, transgender people just want to live their lives. Parents want their children to find a way to be authentic and at peace. The mother in Forsyth County sums up what she wants for her son: “The dream is to have a happy, whole kid who can make it in the world.”

All of the families TCB spoke with shared that they had seen tangible improvements through holistic gender-affirming care. With supportive care has come success in school and stronger relationships. The juxtaposition can be dramatic.

“He went from high performing, to barely getting by, to failing,” Livengood said about his child. “He wouldn’t get out of bed and was missing a lot of school due to high anxiety.”

After several years of hormone therapy, his son is now considering top surgery and isn’t struggling the way he did in those tumultuous days of early transition care. At a college outside of the Triad, this young man is thriving.

Transgender individuals, parents and care providers all shared the same opinion about the difficult processes people have to go through when they are transgender — no child or adult would choose to put themselves through it if it wasn’t necessary. Having blood drawn is painful, and it’s scary for kids. Daily hormone medications are cumbersome. Injections every two weeks hurt, whether they’re given by a nurse or self-administered. Surgery is not an easy road for anyone for any reason.

Now, after helping his child receive the care that he needed, Livengood is hopeful for his future.

“I look forward to what the next chapter brings,” he said with hope in his eyes and pride in his voice. “I’m watching him realize that he’s powerful, and that he can do whatever he needs to do.”