Connor Thonen-Fleck never felt comfortable in his body. Something just felt off, foreign. From an early age he would look in the mirror and feel a disconnect from what he saw.

The word “transgender” was not so much in the public consciousness when he was a child. But on a visceral level, some part of Connor knew that — though he was labeled a female, and seen and treated that way by society — it didn’t make sense to him.

In 7th grade things got worse. Puberty set in, and his body began to transform. It felt wrong in a way, Connor says, that he didn’t yet know how to express.

In groups of people his own age, he would isolate himself. Even with family members, he felt different, set apart. It made him shy and withdrawn, contributing to depression, anxiety, self harm — even suicidal thoughts.

Connor acknowledges he was luckier than many transgender people.

He was white and middle class. And his parents supported and wanted to help him, even if they didn’t yet understand the root of the problem — something even he was struggling to piece together. They tried therapy, and different combinations of medication for depression and anxiety, but he continued to spiral downward.

“We didn’t know what was wrong or how to help,” said Alexis Thonen, Connor’s mother.

There were days when every mother’s worst fear — burying a child — hung over everything.

“Every day we wondered if this would be the day,” she remembers.

“It wasn’t until the end of 7th grade or the beginning of 8th that people began talking about the subject more, being transgender,” said Connor, now 16. “That was the beginning of understanding it was a thing.”

He started slowly, with small changes. He cut his hair short, using masculine photo references to get a look closer to how he saw himself. He wore traditionally masculine clothing. And slowly the alienation began to ease a bit.

“I really didn’t know why, but it felt so good to cut my hair short,” he said. “Ninth grade was when I started to really come to terms with it.”

At first, his parents didn’t fully understand why these changes made such a difference, but they also didn’t care.

“We had our child back,” Connor’s mother said. “We were just so grateful.”

With the help of doctors and therapists, Connor and his family came to understand gender dysphoria.

Gender dysphoria is not a mental illness. The American Psychiatric Association defines it as “a conflict between a person’s physical or assigned gender and the gender with which he/she/they identify.”

More than 40 years of research into and treatment of transgender people experiencing dysphoria has led psychiatric and medical professionals to conclude the most effective course of treatment is gender transition — aligning one’s life socially and sometimes physically to better match their gender identity. Not all transgender people choose to medically transition, but for those for whom it is judged necessary, medical experts agree that it can be life-saving.

Connor legally changed his name and began a social transition, a period of fully living as a young man rather than a young woman.

Together Connor, his doctors, his therapist and his parents agreed medically transitioning was a necessary next step. He had six months of therapy to confirm that before he began a course of testosterone and underwent “top surgery” — a double mastectomy to remove the breasts he was binding uncomfortably at all times except when he bathed.

None of this was cheap. But Connor’s parents were both state employees. They had decent health insurance.

In 2017, as the family planned Connor’s transition, the State Employee Health Plan covered treatment related to gender dysphoria. Indeed, that was the first coverage year in which the plan extended that coverage to transgender people — a move taken to stay in line with federal anti-discrimination policies finalized in May of that year.

But on January 1, 2018 — one day before Conner’s first appointment to begin hormone therapy — that coverage ended.

The medical community’s position had not changed.

The State Treasurer and the State Health Plan Board of Trustees had.

The intrusion of politics, the exclusion of transgender people

State Treasurer Dale Folwell, a conservative Republican and former state lawmaker, made his position on transgender health care coverage clear as he was coming into office in 2016.

He opposed the coverage of transgender health procedures — approved before he was elected — as an unnecessary expense.

“I pledged to the people of North Carolina that we would reduce the state health plan’s 32 billion dollar debt, provide a more affordable family premium especially for our lowest paid employees and provide transparency to the taxpayers,” Folwell said in an email to The News & Observer at the end of 2016, as he was about to take office. “The provision to pay for sex change operations does none of those three things.”

“Sex change operation” is not a term used by medical professionals treating transgender people, insurance companies or the LGBTQ community. It is widely considered offensive both because of its technical inaccuracy and because a wide array of procedures — not just one operation — are utilized in gender transition.

Blue Cross/Blue Shield of North Carolina, which administers the State Employee Health Plan, recognizes that. It has, since 2011, recognized dysphoria as a serious medical issue and covered treatments related to transition, including hormone therapy and gender confirmation surgery.

But Folwell and the plan’s trustees allowed that coverage to expire at the first opportunity — not renewing it for the 2018 plan year and making no move to reinstate it for 2019.

In an e-mail statement to Policy Watch this week, Folwell doubled down on his position.

“The State Health Plan’s policy of not covering sex change operations as a benefit, is the same now as it was during the entire eight years of Treasurer Janet Cowell’s administration and all previous North Carolina Treasurers [sic],” Folwell said in the statement.

[Note: The trustees of the state health plan voted to begin covering treatments for gender dysphoria at the end of 2016, near the end of Cowell’s term in office.]

“The legal and medical uncertainty of this elective, non-emergency procedure has never been greater,” Folwell said. “Until the court system, a legislative body or voters tell us that we ‘have to,’ ‘when to,’ and ‘how to’ spend taxpayers’ money on sex change operations, I will not make a decision that has the potential to discriminate against those who desire other currently uncovered elective, non-emergency procedures.”

“We empathize with all members’ health conditions, but cannot provide them all with every elective, non-emergency procedure they want,” Folwell said.

Folwell’s sentiment could hardly be further from medical reality, said Dr. Deanna Adkins.

Adkins is a pediatric endocrinologist who helped establish Duke Child and Adolescent Gender Care at Duke University Hospital last year. With more than 300 transgender patients now being treated at her clinic, Adkins is one of the most widely-sought medical experts on the issue in the state.

Far from being a frivolous elective procedures, Adkins said there is now ample medical literature showing that gender transition treatments save lives.

“Any other medical diagnosis that had 40 years of research behind it showing there’s a treatment for it that works better than any other treatment, everyone would be behind it,” Adkins said.

Unfortunately, she said, this seems to be a case of politics failing to catch up to science — with dire consequences for transgender people of all ages.

Younger patients who began hormone therapy to prevent puberty while they transition but have now lost insurance coverage could now face manufacturer costs of $5,600 a treatment, four times a year. Those who can’t afford that may have to stop treatment — a dangerous proposition since puberty is the most likely time for transgender adolescents struggling with dysphoria to attempt suicide.

Last month, a study of transgender adolescent suicidal behavior in the journal Pediatrics found staggering percentages of transgender adolescents have attempted suicide.

“Female to male adolescents reported the highest rate of attempted suicide (50.8%),” the study said. “Followed by adolescents who identified as not exclusively male or female (41.8%), male to female adolescents (29.9%), questioning adolescents (27.9%), female adolescents (17.6%), and male adolescents (9.8%). Identifying as nonheterosexual exacerbated the risk for all adolescents except for those who did not exclusively identify as male or female (ie, nonbinary). For transgender adolescents, no other sociodemographic characteristic was associated with suicide attempts.”

But Adkins noted that such self-reporting studies have a major shortcoming. They only include the young people who survived to participate.

“We don’t know the real numbers,” Adkins said. “But they’re obviously higher.”

Older transgender people who have lost coverage while transitioning could face serious health consequences as well, Adkins said.

“For the adults, if you’ve already had your testes or ovaries removed and can’t afford your testosterone, you run the risk of changes in cognitive function, early menopause, lower bone density,” Adkins said. “Plus a lot of depressed mood can be exacerbated in people who are already struggling with depression and anxiety.”

If those trying to cut costs in medical plans believe they are doing so by excluding treatment of dysphoria, Adkins said, they are not doing the math properly. While maintenance doses of testosterone or estrogen may run to $30-$40 per month and double mastectomies may cost as much as $10,000, the consequences of untreated dysphoria are many times higher.

“One hospitalization after an attempted suicide is going to cost $10,000,” Adkins said. “Then there’s repeated treatment for self harm, therapy that can be $200 per visit several times a week, and continued medication to try to treat depression and anxiety that is not a bio-chemical but comes from dysphoria that you are not treating.”

Many of the treatments that are most helpful to transgender patients are already widely in use — and covered — for cisgender patients, or patients whose bodies match their gender identities.

“You have many men who are cisgender and are prescribed testosterone, and estrogen is widely prescribed for cisgender women,” Adkins said. “Those people are covered.”

That difference — singling out one group to deny them similar coverage — may lead North Carolina into further discrimination lawsuits.

Politics may make that inevitable.

The health plan has a 10-member board of trustees. Folwell and State Budget Director Charlie Perusse are ex officio members. Two members are appointed by Gov. Roy Cooper, a Democrat. The others are appointed by Folwell or the General Assembly, whose GOP majority contends that transgender identity does not exist, but is the result of improperly treated mental illness.

Across the country, that appears to be a losing argument. But with a new conservative Supreme Court in place and President Donald Trump’s administration preparing to change federal law to allow for transgender discrimination, North Carolina lawmakers appear ready to take their chances in continuing legal fights.

Legal arguments, personal stories

In July, a federal judge ordered the state of Wisconsin to pay for the treatment of two transgender Medicaid recipients. That led the governing board of the state employee health plan to reverse a decision to exclude treatments related to dysphoria.

Similar discrimination suits and outcomes are proliferating across the country — including a federal ruling earlier this month that transgender people are not barred from using restrooms and other public facilities that correspond to their gender identity under a North Carolina law passed year to replace HB2.

Noah Lewis, attorney and executive director of Transcend Legal, gave testimony at a meeting of the state health plan trustees board this week. His firm already represents transgender North Carolina employees in a discrimination case before the Equal Employment Opportunity Commission. He says he’s heard from 20 people covered by the state health care plan who would participate in legal action over transgender exclusion in the state health care plan.

“All healthcare costs money,” Lewis said this week. “But you can’t single out on a discriminatory basis certain forms of treatment and surgery, like those used to treat gender dysphoria.”

Lewis, who transitioned while a student at Harvard Law School, helped to convince the school to drop its ban on dysphoria treatments in the student health plan. He’s since gotten corporations like GEICO, Allied Universal and Adecco Staffing to drop similar exclusions from their plans without having to go to court. He’s currently representing transgender clients in a lawsuit against the University of Georgia.

The erasure of identity

For Ames Simmons, policy director for Equality NC, the battle is also personal.

When he transitioned, he was already a successful attorney, a much more secure position than many people who transition, he said.

“As with many trans people when it comes to health care, there are two main barriers. One is access and the other is discrimination,” Simmons said this week. “Prior to my current job, where I do have trans inclusive health insurance, the company I worked for for almost 20 years as an attorney had a blanket exclusion under their Aetna plan and their United Health Care plan.”

“Despite my coming out as a transgender employee and providing them with information about how they were providing fringe benefits to one group of people they denied to another group, they were unmoved by that,” Simmons said.

Simmons had to save income tax refunds, bonuses, car insurance rebates — anything he could scrape together — to afford his own health care. It took years.

He also met doctors who didn’t accept transgender patients because they weren’t knowledgeable about current protocols and procedures, or who just said “we don’t do that here.”

“The way it exists now is the way it is in so much of healthcare,” Simmons said. “If you have enough privileged identity and have enough money, you can get care. If you don’t, you’re out of luck.”

Max Kadel agrees. He’s a transgender man who, as an employee of the UNC School of Government, lost coverage for testosterone last year. Transitioning as an adult, Kadel struggled to re-imagine and reorder his life to embrace what he said was always his true gender identity.

Still, he said he knows his struggles are minimal compared to less privileged transgender people who struggle to find employment, to afford basic necessities and who are discriminated against because of their race and gender expression.

“This trans healthcare exclusion affects me negatively personally, both in terms of being able to access healthcare I need, and in terms of the message it sends me as a trans citizen of North Carolina,” Kadel said. “But a huge reason I’m speaking out about it, even though I’m scared to, is that the message it sends me — that I’m not wanted — is also the message it sends other agencies in North Carolina, that trans North Carolinians are not full citizens. I’ve seen the end results of this message first-hand as a Guardian ad Litem for a young, black, gender-non-conforming person in foster care.”

“Not only could that young person not access the care they needed and deserved, they also ended up being criminalized and sent to adult prison because of conflict stemming directly from their gender-non-conforming presentation,” Kadel said. “And that’s not a rare occurrence for trans women of color. Just being a black or indigenous transfeminine person is often read as evidence of being a criminal, and incarcerations rates for trans women of color bear that out.”

Being told by their government that their identity is a fantasy, that their medical treatment is elective or cosmetic, is incredibly dispiriting, Kadel said, on top of everything else transgender people deal with every day.

“It’s about more than health coverage,” said Connor Thonen-Fleck. “I’m a 16 year old kid who has to worry about how I’m going to pay for my health care, who works 40 hours a week in the summer and saves up everything to try to help pay for it. And I’m being told my health condition is just cosmetic.”

For Alexis Thonen, Connor’s mother, the anxiety and frustration are constant. Her family is on a payment plan with Wake Forest Baptist Hospital, Connor’s medical home. They’re paying as best they can without coverage. But it’s impossible not to hear — and feel — the message that denial of coverage is sending.

“Blue Cross/Blue Shield as a whole agrees in their policy that gender dysphoria is a medical condition and it is worthy of treatment,” Thonen said. “It is that panel of board members who disagree and have decided to exclude them from coverage. That’s ludicrous.”

“The doctors agree,” said Thonen. “The plan as a whole agrees. Who are these people to overrule that? They’re not doctors. They’re financial people. Their job is to figure out how to pay for the coverage, not determine what the coverage should be.”