Medical coding creates barriers to care for transgender patients.

Last year, Tim Chevalier received multiple coverage denials from his insurance company for a hair removal procedure he needed as part of a phalloplasty, a penile reconstruction.

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 phalloplasty or vaginoplasty, the creation of a vagina, because all hair must be removed from the tissue that will be transplanted during surgery.

Chevalier’s insurer, Anthem Blue Cross, told him he needed what’s known as a prior authorization for the procedure. Even after Chevalier was granted permission, he said, his claims for compensation continued to be rejected. According to Chevalier, Anthem said the procedure was considered cosmetic.

Many trans patients have difficulty getting their insurers to cover gender confirmation care. One reason is transphobia in the American health care system, but another is because medical diagnoses and procedures are codified for insurance companies. Across the country, health care providers use a list of diagnosis codes provided by the International Classification of Diseases, Tenth Revision, or ICD-10. And many of them, transgender advocates say, have not met the needs of patients. Such diagnosis codes provide the basis for determining which procedures, such as electrolysis or surgery, will be covered by insurance.

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

She advocates moving to the 11th edition of the coding system, which was endorsed 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The new edition replaces outdated terms such as “transsexualism” and “gender identity disorder” with “gender nonconformity,” which is now classified as a sexual health condition, not a mental health condition. has gone Olsen-Kennedy said this is important in reducing the stigma of trans people in health care.

Moving away from mental health classifications may also mean greater coverage of gender-affirming care by insurance companies, which sometimes question mental health claims more strongly than for physical illnesses. WHO officials have said they hope that including the gender gap in the chapter on sexual health will “help increase access to care for health interventions” and “help destigmatize the condition.” Gay” according to the WHO website.

However, history suggests that ICD-11 will likely not be implemented in the US for years. The WHO first endorsed 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 huge out-of-pocket bills. . Chevalier estimated that he had obtained 78 hours of electrolysis at $140 per hour, at a cost of $10,920.

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

However, even after receiving prior approval, Anthem responded to Chevalier’s claims that electrolysis would not be reimbursed because the procedure was considered cosmetic rather than medically necessary. This is regardless of Chevalier’s diagnosis of gender dysphoria – the psychological distress experienced when one’s biological sex and gender identity do not match – which many doctors consider a medically valid reason for hair removal.

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

Still, Chevalier filed a complaint with the California Department of Health Care, and the state declared Anthem Blue Cross out of compliance. Additionally, when KHN began asking Anthem questions about Chevalier’s bills, two claims that had been unresolved since April were resolved in July. So far, Anthem has paid Chevalier close to $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 covers those visits only for people enrolled as women.

“There’s always this question: What gender should you tell the insurance company about?” said Dr. Nick Gorton, an emergency medicine physician in Davis, California. Gorton, who is trans, recommends his patients with insurance plans that exclude transcare and calculate out-of-pocket costs that will be required for certain procedures based on whether the patient has their insurance paperwork. Lists themselves as male or female at work. 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 likely won’t cover both.

For years, some physicians helped trans patients get coverage by finding other medical reasons for their trans-related care. If, for example, a transgender man wants a hysterectomy but his insurance doesn’t cover gender-affirmation care, Gorton says the ICD for pelvic pain, as opposed to gender dysphoria, should appear in the patient’s billing record. -10 will enter the code. Pelvic pain is a legitimate reason for surgery and is generally accepted by insurance providers, Gorton said. But some insurance companies backed out, and he had to find other ways to help his patients.

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

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

When Dr. Eric Menninger, an internist and pediatrician at Indiana University Health’s Gender Health Program, treats a trans child seeking hormone therapy, he usually cites “medication management” as the primary reason the patient comes. Use ICD-10 codes. This is because Indiana has no law providing insurance protections for LGBTQ+ people, and when gender dysphoria is listed as the underlying cause, insurance companies have denied coverage.

“It’s disappointing,” Menninger said. In a patient’s billing record, he sometimes provides multiple diagnoses, including gender dysphoria, to increase the likelihood that a procedure will be covered. “Usually it’s not hard for someone to come up with five or seven or eight diagnoses because there are so many ambiguities.”

Implementing ICD-11 will not solve all coding problems, as insurance companies may still refuse to cover a procedure 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-affirming care. But in terms of reducing stigma, it’s a step forward, Olsen-Kennedy said.

One of the reasons the US took so long to move to ICD-10 is that the American Medical Association strongly opposed the move. He argued that the new system would place an incredible burden on doctors. The AMA wrote in a 2014 letter that doctors would have to contend with “68,000 diagnosis codes — more than five times the roughly 13,000 diagnosis codes used today.” The association argued that implementing software to update providers’ coding systems would also be costly, putting smaller medical practices at a financial disadvantage.

WHO spokesman Christian Lindemeier said that unlike past coding systems, ICD-11 is fully electronic, with no physical manual of codes, and requires a new rollout into the existing coding system of the medical facility. can be added without

Whether these changes will make it easier to adopt the new edition in the US remains to be seen. For now, many trans patients who need gender-affirming care pay their bills out of pocket, fight their insurance company for coverage, or rely on the generosity of others.

“Even though I finally got paid, the payment was delayed, and it cost me a lot of time,” Chevalier said. “Most people would have given up.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Along with policy analysis and polling, KHN is one of the three major operating programs of the KFF (Kaiser Family Foundation). KFF is a non-profit organization that provides information on health issues to the nation.

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