GREENVILLE, South Carolina — As a teenager, Camille Kiefel struggled with discomfort with her body. These struggles continued until college when Kiefel, a gender studies minor, was introduced to the idea of being non-binary.

At age 30, after two decades of traditional talk therapy for persistent mental health struggles, Kiefel reached out to her doctor about undergoing what’s often euphemistically called “gender-affirming care.” In Kiefel’s case, it was a double mastectomy, or removal of both her breasts.

After two Zoom calls with mental health professionals, Medicaid approved the double mastectomy as medically necessary and she received the surgery. But rather than relief, Kiefel’s suicidal ideation increased and she developed new health issues. She began working with a naturopathic doctor to address some underlying physical problems. As her physical health improved, so did her mental health. It was after this trying period she came to regret her surgery.

“A year-and-a-half after I’d had the top surgery I realized, ‘you know what, I’m a woman,’ and I detransitioned,” Kiefel told the DCNF.

Kiefel became one of many so-called “detransitioners,” a term used to describe individuals seeking to pause or reverse the impact of sex reassignment medical interventions.

But unlike the clear and often fast-tracked route to receive sex-reassignment interventions, Kiefel found the pathway to reverse those treatments far less obvious.

Currently, the medical community lacks treatment guidelines to help guide detransitioners as they navigate the physical ailments caused by sex reassignment interventions. A 2023 paper by Sarah C.J. Jorgensen titled “Iatrogenic Harm in Gender Medicine” noted that several major medical organizations which support pediatric sex reassignment, such as the World Professional Association or Transgender Health, the American Academy of Pediatrics, and the Endocrine Society, excluded medical recommendations for detransitioners.

Furthermore, data collection about the healthcare needs of detransitioners is severely impaired because there are no diagnostic or procedural medical billing codes to describe them or their care.

Medical billing codes, sometimes called the language of healthcare, include International Classification of Diseases (ICD) codes and Current Procedural Terminology (CPT) codes.

ICD codes are published by the World Health Organization and provide comprehensive diagnostic codes for diseases and injuries. CPT codes, which are owned and copyrighted by the American Medical Association (who receive royalty payments for their use), describe procedures and medical services.

The use of these codes creates a valuable dataset used in medical research to create standards of care and develop evidence-based practices.

For example, a recent JAMA study used ICD codes to illustrate a sharp increase in sex reassignment surgery between 2016 to 2019. The researchers identified the data by locating the ICD codes for Gender Identity Disorders.

However, one could not replicate a similar search for detransitioners because there are no ICD codes to describe their care. While there are medical billing codes for “history of sex reassignment surgery” and “transexualism,” there are no codes for detransitioners, and physicians treating detransitioners are forced to record medical encounters under billing codes for other diagnoses.

Dr. Carrie Mendoza, the Director of FAIR in Medicine, told the DCNF that until the needed billing codes are created, researchers lack reliable way to collect data on the growing cohort of detransitioners.

“Without proper documentation for the growing cohort of new patients, the healthcare system cannot properly document their medical issues, accurately bill for services, or conduct proper research into best practices for all suffering from gender dysphoria,” said Mendoza.

Mendoza says this needs to change.

“Creating billing codes for detransitioners is a nonpartisan, nonpolitical issue,” said Mendoza.

Mendoza said that if a state legislature successfully passed a bill mandating insurance coverage for reversing “gender-affirming” treatments, it would exacerbate the need for detransitioner billing codes.

“Several states, Texas and Oregon, have introduced legislation to require insurance coverage for detransitioners. Billing codes will be needed once legislation has passed,” said Mendoza.

In March 2023, Kiefel testified in favor of an amendment to Oregon HB 2002, which required insurance companies providing coverage for sex reassignment services to also cover ‘Detransition treatment’ for those recovering from attempted sex changes.

The amendment, introduced by Oregon Republican Representative Ed Diehl, was voted down.

“The chair of the committee did not want me to bring that amendment to a vote,” Diehl told the DCNF. “He said it was too controversial. And I said, well this is just a fair thing to do.”

“Every Democrat voted ‘no’ on it without any discussion other than from the chair. But he tried to provide cover during that hearing; he said, ‘Well, if you look at the words in the bill, it’s already covered.’ Well that’s not true,” said Diehl.

HB 2002 was passed, without the amendment, and signed into law on July 13, 2023.

After the hearing, Andrew Stolfi, Director of Oregon Department of Consumer and Business Services, sent a letter to Oregon House Speaker Democrat Dan Rayfield, claiming that detransition was covered in the bill.

The letter explained that a person wanting to reverse the impacts of sex reassignment services would be covered by insurance suggesting that, similarly to “gender affirming care,” detransition treats an incongruence between a persons’ chosen “gender identity” and their sex.

But Diehl disagreed.

“They continue to say destransition is covered; but then how do you bill for it?” Diehl told the DCNF.

The Oregon Department of Consumer and Business Services, however, insisted detransitions were covered under the law.

“Our interpretation of House Bill 2002 is that it does cover detransition care,” a department spokesperson told the DCNF. “The Oregon Department of Consumer and Business Services does not regulate billing codes and cannot speak to how these procedures are coded or the degree to which they have distinct billing codes from other gender affirming care. We also do not have data on utilization.”

Mendoza says billing codes for detransitioners are needed to provide better care and prevent regrets.

“We have created a cohort of patients with regret. We need to have better data so we can analyze how they were misdiagnosed and provide better care,” said Mendoza. 

Kiefel told the DCNF that bias within the medical community may play a role in why destransitioners are not being accurately documented.

“The problem too, I can imagine, is that if you’re going back to an LGBTQ+ doctor I doubt that they’re going to want document detransitioners,” said Kiefel. “I’ve heard so many times and so many people have said to me online, ‘you’re using your story to hurt trans people.’ So there’s a bias there that’s actually not going to help get accurate information for people who detransition.”

Despite facing obstacles, Kiefel remains resilient, using her personal experiences to advocate for better medical care and the creation of billing codes detransitioners.

She has started a nonprofit organization, Detrans Help, which supports individuals recovering from sex reassignment interventions.

“We just need to figure out what’s actually going on here and be objective because people are getting harmed by this,” said Kiefel.

The AMA and WHO did not respond to a request for comment.

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