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 It made him shy and withdrawn, contributing to depression, anxiety, self harm — even suicidal thoughts.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, this seems to be a case of politics failing to catch up to science — with dire consequences for transgender people of all ages.
--Deanna Adkins, MD
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.