How US billing rules make detransitioning a Hotel California nightmare

Opinion

By Aida Cerundolo and Carrie Mendoza

June 14, 2023 | 9:03pm

The Eagles’ hit song “Hotel California” describes what some patients experience while trying to exit “gender-affirming care”: “You can check out any time you like, but you can never leave.”

There are dozens of medical-billing codes for so-called “gender-affirming care,” the label for treatments for patients transitioning to a new gender identity.

By contrast, there is not one billing code for the health care that a growing number of “detransitioners” are seeking — that which helps patients safely cease gender-transition therapies and reclaim their biological gender.

Medical-billing codes are unique letter-number combinations assigned to each diagnosis and intervention; they allow medical practitioners to invoice insurers and thus ensure revenue fuel for the US health-care system.

They also provide a means to collect valuable health information that improves patient care and safety.

There are tens of thousands of medical-billing codes representing every health-related encounter imaginable.

Codes describing medical diagnoses and in-hospital procedures are authorized by the National Center for Health Statistics and the Center for Medicare and Medicaid Services, while procedural codes specific to physicians and outpatient facilities are developed by the American Medical Association.

There’s a billing code for “bitten by a turkey,” “walked into lamppost,” reversal of a sterilization procedure for patients who regret it and one for subsequent aftercare — the list goes on.

But despite an emerging number of people regretting their gender transition, there are no medical-billing codes reflecting management of patients who have checked out of gender-affirming treatments or any codes specific to detransition care.

The absence of billing codes for gender detransition can make it difficult for patients to receive treatment when reverting to their biological gender.

Health-care professionals have no standardized way to describe and communicate about the condition or submit claims specific to these visits.

Many may not even recognize detransition exists.

This leaves a cohort of patients with potentially unreliable and inconsistent care.

One detransitioning patient we know, Katie, learned this the hard way.

Biologically female and no longer identifying as a man, Katie has sought medical care to assist her with myriad ailments resulting from gender-affirming care but faces the obstacles many detransitioners face: The care she needs has no codes so it does not officially exist within the health-care system.

Katie began presenting as a man at age 18 when she was diagnosed with gender dysphoria (billing code F64.9).

She initiated testosterone at 19 (billing code Z79.890), underwent double mastectomy at 20 (billing code 19318) and removal of her uterus, cervix, fallopian tubes and ovaries at 24 due to unbearable pain and cancer risk resulting from testosterone use (billing code 58571).

Immediately following her hysterectomy, Katie was rushed back to surgery for persistent bleeding (billing code 49002-78).

At her two-week post-surgical appointment, Katie was offered phalloplasty (billing code 55899), but she declined.

Soon afterwards, Katie realized her dysphoria was not rooted in a need to be male, and she began to detransition.

But detransitioning was not as seamless as her female-to-male gender transition.

Sterile and confronting menopause at age 25, Katie attempted to obtain the estrogen she needed from gender clinics.

But medical practitioners continued to treat her as a transgender man.

Multiple phone calls explaining what she meant by detransitioning finally led to an estrogen prescription — at the higher dose used for transgender females (biological males).

To complicate matters, her medical insurance records continued to reflect her gender as male, throwing into question her need for estrogen.

Each step of Katie’s female-to-male gender transition had an assigned billing code and was covered by insurance.

Gender-affirming surgeries are usually covered by insurance benefits, but surgical reversals of gender-affirming procedures are often deemed medically unnecessary and are excluded from covered services.

Though not all the codes used in gender-affirming care are specific to gender transition, multiple codes for “gender identity disorder” and a code for “transsexualism” (F64.0) document patients’ discontent with their biological gender, often heralding gender-affirming treatment.

“History of sex reassignment surgery” is coded (Z87.890), ensuring clear communication and documentation of transgender identity.

Billing codes that support gender transition regret, reversal and related services are needed to improve the system that let Katie down.

Valuable data from billing codes are used to track disease processes and enhance care.

Clinicians treating detransitioners must file medical encounters under billing codes used for other diagnoses, making detransition untraceable and almost invisible to the American health-care system.

Detransition is reported as rare, with occurrence rates ranging from 0.3% to 3%.

But without detransition billing codes, the true rate is a black box — and certainly much higher.

One study suggests rates may be as high as 30%.

What we do know from medical-billing-code data is that new diagnoses of gender dysphoria in children and adolescents have tripled since 2017.

Camouflaging gender detransition within the maze of medical-billing codes signals that detransitioners don’t exist — but Katie and others like her know otherwise.

Patients should never feel trapped by a health-care system that offers an easy entry to treatment but provides no way out.

Dr. Aida Cerundolo is an emergency-medicine physician and fellow at FAIR in Medicine. Dr. Carrie Mendoza is an emergency-medicine physician and the director of FAIR in Medicine, the professional association of the Foundation Against Intolerance and Racism, a nonprofit, nonpartisan organization advocating for the safe and ethical practice of medicine.