Medical coding creates barriers to care for transgender patients

Last year, Tim Chevalier received the first of many denials of coverage from his insurance company for a hair removal procedure required to create a penis as part of a phalloplasty.

Electrolysis is a common procedure among transgender people like Chevalier, a software developer in Oakland, California. In some cases, it is used to remove unwanted hair from the face or body. But it is also necessary for a phalloplasty, or vaginoplasty, to create a vagina, because all the hair must be removed from the tissue that will be transplanted during the surgery.

Chevalier’s insurer, Anthem Blue Cross, told him the procedure required what’s known as a prior authorization. Even after Chevalier got approval, he said, his reimbursement claims were being denied. According to Chevalier, Anthem said the procedure was considered cosmetic.

Many trans patients have trouble getting their insurers to cover gender-affirming care. One reason is transphobia within the US health care system, but another involves how medical diagnoses and procedures are coded for insurance companies. Nationwide, health care providers use a list of diagnostic codes provided by the International Classification of Diseases, Tenth Revision, or ICD-10. And many of them, transgender advocates say, don’t meet patients’ needs. Such diagnostic codes provide the basis for determining which procedures, such as electrolysis or surgery, will be covered by insurance.

“It’s widely considered that codes are too limited in ICD-10,” said Dr. Johanna Olson-Kennedy, medical director of the Center for Transyouth Health and Development at Children’s Hospital Los Angeles.

He advocates moving to the 11th edition of the coding system, which was approved by the World Health Organization in 2019 and began to be adopted worldwide in February. Today, more than 34 countries use ICD-11.

The new version replaces old terms like “transsexualism” and “gender identity disorder” with “gender nonconformity,” which is no longer classified as a mental health condition, but as a sexual health one. Olson-Kennedy says this is crucial to reducing the stigma of trans people in health care.

Moving away from mental health classifications may mean more coverage of gender-affirming care by insurance companies, which sometimes question mental health claims more harshly than physical illnesses. WHO officials said they hope that adding gender nonconformity to the chapter on sexual health will “help increase access to health intervention care” and “destigmatize the condition”, according to the WHO website.

However, history suggests that ICD-11 will likely not be implemented in the United States for years. The WHO first approved ICD-10 in 1990, but the United States did not implement it for 25 years.

Meanwhile, patients who identify as transgender and their doctors are spending hours trying to get coverage — or using crowdfunding to cover big out-of-pocket bills. Chevalier estimated he received 78 hours of electrolysis at $140 per hour, a cost of $10,920.

Anthem spokesman Michael Bowman wrote in an email that “there was no medical denial or denial of coverage” because Anthem “pre-approved coverage for these services.”

However, even after granting pre-approval, Anthem responded to Chevalier’s claim by saying that electrolysis would not be reimbursed because the procedure was considered cosmetic rather than medically necessary. This is despite Chevalier’s diagnosis of gender dysphoria – the emotional distress felt when one’s biological sex and gender identity do not match – which many doctors consider a medically valid reason for hair removal.

Bowman wrote that “once this problem was identified, Anthem implemented an internal process that included a manual override in the billing system.”

Close-up of a man's hand where his left arm is marked with a line and has less hair than his right arm.
Chevalier has been repeatedly denied by his health plan for reimbursement claims for his phalloplasty, the electrolysis hair removal required to create a penis. For the surgery her skin was cut showing her arm where the hair was removed.(Shelby Knowles for KHN)

Still, Chevalier filed a complaint with California’s Department of Managed Health Care and the state declared Anthem Blue Cross out of compliance. Additionally, two claims that had not been addressed since April were resolved in July, after KHN began asking Anthem questions about Chevalier’s bill. So far, Anthem has refunded Chevalier about $8,000.

Some procedures that trans patients receive may also be excluded from coverage because insurance companies consider them “gender-specific.” For example, a transgender man’s gynecological visits may not be covered because his insurance plan only covers those visits for people who register as female.

“There’s always this question: What gender should you tell the insurance company?” says Dr. Nick Gorton, an emergency medicine physician in Davis, California. Gorton, who is trans, advises her patients on insurance plans that exclude trans care and calculate out-of-pocket costs that will be required for certain procedures based on whether the patient lists themselves as male or female on their insurance paperwork. For example, Gorton said, the question for a trans man becomes “what’s more expensive — paying for testosterone or paying for a Pap smear?” – since insurance probably won’t cover both.

Over the years, some physicians have helped trans patients find coverage for their trans-related care by finding other medical reasons. Gorton said that, for example, if a transgender man wants a hysterectomy but his insurance doesn’t cover gender-affirming care, Gorton will enter the ICD-10 code for pelvic pain as opposed to gender dysphoria in the patient’s billing record. Pelvic pain is a valid reason for surgery and is generally accepted by insurance providers, Gorton said. But some insurance companies pushed back, and he had to find other ways to help his patients.

In 2005, California passed a first-of-its-kind law prohibiting discrimination by health insurance based on gender or gender identity. Now, 24 states and Washington, DC, prohibit private insurance from excluding transgender-related health care benefits.

“Although I was finally compensated, the refunds were delayed and it burned a lot of my time,” says Chevalier. “Most people would have given up.”(Shelby Knowles for KHN)

As a result, Gorton no longer has to use separate codes for patients seeking gender-affirming care at his practice in California. But doctors in other states are still struggling.

When Dr. Eric Meininger, an internist and pediatrician in Indiana University Health’s Gender Health Program, treats a trans kid seeking hormone therapy, he usually uses the ICD-10 code for “medication management” as the primary reason for the patient’s visit. Because Indiana has no laws providing insurance protection for LGBTQ+ people, and when gender dysphoria is listed as a primary cause, insurance companies have denied coverage.

“It’s frustrating,” Meininger said. On a patient’s billing record, he sometimes provides multiple diagnoses, including gender dysphoria, to increase the likelihood that a procedure will be covered. “It’s not usually difficult for someone to diagnose five or seven or eight diseases because there are so many ambiguities.”

Implementing ICD-11 will not solve all coding problems, as insurance companies may still refuse to cover procedures related to gender nonconformity even though it is listed as a sexual health condition. It also won’t change the fact that many states still allow insurance to exclude gender-defining care. But in terms of reducing stigma, it’s a step forward, Olson-Kennedy said.

One of the reasons it took so long for the US to switch to ICD-10 was because the American Medical Association strongly opposed the move. It argued that the new system would place an incredible burden on doctors. Physicians “must contend with 68,000 diagnosis codes — a fivefold increase from the approximately 13,000 diagnosis codes currently used,” the AMA wrote in a 2014 letter. Implementing software to update providers’ coding systems would also be expensive, a financial blow for smaller medical practices, the association argued.

Unlike past coding systems, ICD-11 is fully electronic, with no physical manual to code, and can be incorporated into a medical facility’s current coding system without requiring a new rollout, said Christian Lindmeyer, a WHO spokesman.

Whether these changes will ease adoption of the new version in the US remains to be seen. For now, many trans patients who need gender-affirming care must pay their bills out of pocket, fight their insurance companies for coverage, or rely on the generosity of others.

“Even though I was eventually compensated, the refunds were delayed and it burned up a lot of my time,” Chevalier said. “Most people would have given up.”

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