Many trans people such as Tim Chevalier, a software developer in Oakland, California, have trouble getting their health insurers to cover gender-affirming care.

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 the hair removal procedure he needed as part of a phalloplasty, the creation of a penis.

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

Chevalier’s insurer, Anthem Blue Cross, told him he needed what’s called pre-clearance for the procedure. Even after Chevalier received clearance, he said, his refund requests were denied. According to Chevalier, Anthem said the procedure was considered cosmetic.

Many trans patients struggle to get their insurers to cover gender-affirming care. One reason is transphobia within the US healthcare system, but another has to do with how diagnoses and medical procedures are coded for insurance companies. Nationally, 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, say transgender advocates, have failed to meet the needs of patients. These diagnostic codes provide the basis for determining which procedures, such as electrolysis or surgery, will be covered by insurance.

“It’s widely accepted that codes are very 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.

She is advocating for a move to the 11th edition of the coding system, which was endorsed by the World Health Organization in 2019 and began to be adopted around the world in February. Today, more than 34 countries use the ICD-11.

The new edition replaced outdated terms such as “transsexualism” and “gender identity disorder” with “gender incongruity”, which is no longer classified as a mental health problem, but as a sexual health problem. . This is crucial for reducing the stigma of trans people in health care, Olson-Kennedy said.

A move away from mental health classification may also mean greater coverage of gender-affirming care by insurance companies, which sometimes question claims for mental health more rigorously than those for physical illnesses. WHO officials said they hoped adding gender incongruity to a chapter on sexual health would “help increase access to care for health interventions” and “de-stigmatize the stigma.” disease,” according to the WHO website.

However, history suggests that ICD-11 likely won’t 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 bills. Chevalier estimated that he received 78 hours of electrolysis at $140 per hour, at a cost of $10,920.

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

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

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

Chevalier suffered repeated denials from his health plan on reimbursement requests for the electrolysis hair removal required for his phalloplasty, the creation of a penis. Her forearm shows where the hair was removed to harvest her skin for surgery. Photo by Shelby Knowles for KHN

Still, Chevalier filed a complaint with the California Department of Managed Health Care, and the state declared Anthem Blue Cross non-compliant. Additionally, after KHN began asking Anthem about Knight’s bills, two claims that hadn’t been addressed since April were resolved in July. So far, Anthem has refunded Chevalier around $8,000.

Certain 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 visit may not be covered because his insurance plan only covers such visits for those registered as women.

“There’s always this question of: what gender should you tell the insurance company?” said Dr. Nick Gorton, an emergency physician in Davis, Calif. Gorton, who is trans, recommends that his patients whose insurance plans exclude trans care calculate the out-of-pocket costs that would be required for certain procedures based on whether the patient lists as male or female on their medical records. insurance. For example, Gorton said, the question for a trans man becomes “which is more expensive – paying for testosterone or paying for a blood test?” – since insurance probably won’t cover both.

For years, some doctors have helped trans patients get coverage by finding other medical reasons for their trans-related care. Gorton said that if, for example, a transgender man wanted a hysterectomy but his insurance didn’t cover gender-affirming care, Gorton would enter the ICD-10 code for pelvic pain, as opposed to gender dysphoria, in the patient’s billing record. Pelvic pain is a legitimate reason for surgery and is generally accepted by insurers, Gorton said. But some insurance companies backed down, and he had to find other ways to help his patients.

In 2005, California passed a first-of-its-kind law that prohibits health insurance discrimination on the basis of sex or gender identity. Today, 24 states and Washington, DC prohibit private insurance from excluding transgender-related health care benefits.

“Even though I was eventually reimbursed, reimbursements were delayed and it took me a long time,” says Chevalier. “Most people would have just given up.” Photo by Shelby Knowles for KHN

As a result, Gorton no longer needs to use different 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 at Indiana University’s Sexual Health Program, treats a trans child seeking hormone therapy, he commonly uses the ICD-10 code for “medication management” as his primary reason for patient visit. That’s because Indiana has no law providing insurance protections for LGBTQ+ people, and when gender dysphoria is listed as the primary reason, insurance companies have denied coverage.

“It’s frustrating,” Meininger 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. “It’s usually not hard to come up with five, seven or eight diagnoses for someone, because there are so many vague ones.”

Implementing ICD-11 will not solve all coding issues, as insurance companies can still refuse to cover procedures related to gender incongruity, even if it is listed as a sexual health issue . Nor will it 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, Olson-Kennedy said.

One of the reasons the United States took so long to switch to ICD-10 is that the American Medical Association strongly opposed it. He argued that the new system would place an incredible burden on physicians. Physicians would “face 68,000 diagnostic codes — a five-fold increase from the approximately 13,000 diagnostic codes in use today,” the AMA wrote in a 2014 letter. Software to update providers’ coding systems would also be costly and would be a financial blow to small medical practices, the association argued.

Unlike older coding systems, ICD-11 is fully electronic, with no physical manual of codes, and can be integrated into a medical facility’s current coding system without requiring a new deployment, said Christian Lindmeier, spokesperson for WHO.

It remains to be seen whether these changes will facilitate the adoption of the new edition in the United States. For now, many trans patients in need of gender-affirming care must pay their bills out of pocket, fight their insurance company for coverage, or rely on the generosity of others.

“Even though I was eventually reimbursed, reimbursements were delayed and it took me a long time,” Chevalier said. “Most people would have just given up.”

This story was produced by KHN (Kaiser Health News), a national newsroom that produces in-depth journalism on health issues. Along with policy analysis and polls, KHN is one of the three main operating programs of the KFF (Kaiser Family Foundation). KFF is an endowed non-profit organization providing information on health issues to the nation.

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