t is, perhaps, a peculiar fact involving an obscure medical text, but it is one that is now taking on outsized importance: The World Health Organization, in a compendium of conditions and diseases, lists being transgender under the umbrella of mental illness.
The WHO publishes a standardized coding system used around the globe to classify medical conditions, for research purposes and health-care billing. In the document, being transgender is currently included in a section with kleptomania (the overwhelming impulse to steal), trichotillomania (the compulsion to pull out one’s own hair), and pedophilia (a preference for having sex with children).
Being transgender does not belong in that company, critics say, and they argue it is long past time for the world’s leading health body to drag the document — last revised in the 1980s — into the 21st century.
This week, Danish lawmakers issued an ultimatum, telling the WHO that Denmark will move unilaterally if the global health agency doesn’t make the change over the next few months — although it’s unclear how they might do that.
“I think it’s really time to push the WHO in the direction of changing now,” Flemming Møller Mortensen, a Social Democrat member of Parliament and deputy chairman of the health committee, told STAT in an interview.
“Now we give them a little kick and we say: ‘If you do not finish in the autumn of this year, we will go by ourselves by the first of January.’’’
The document at the center of the controversy is the International Classification of Diseases — the ICD for short.
Thousands of conditions and variations of conditions are divvied up into broad chapters — diseases of the digestive system, diseases of the eye, and the like.
The medical record of anyone suffering from a bout of diarrhea and vomiting caused by a norovirus infection — whether diagnosed on a Caribbean cruise or after a wedding in Sweden — is coded as A08.1. The sting of a jellyfish is a T63.6 The sting of a scorpion is a T63.2.
The current edition, ICD-10, was revised in the 1980s, approved in 1990, and was put into general use in 1994.
In it, being transgender — the term “gender incongruence” is increasingly used — is listed in the chapter “Mental and Behavioral Disorders.”
Gregory Hartl, a spokesman for the WHO, said the ICD-10 doesn’t really list being transgender as a mental health disease — even if it is located in that chapter.
“The conditions in that block are not mental diseases, and gender incongruence is not classified as a mental disease — although that block is located inside the chapter ‘Mental and Behavioural Disorders,’” Hartl wrote in an email.
An overhaul of the massive code catalog has been in the works for nearly a decade. But the task has taken much longer than anticipated. Originally set to be published in 2012, the release of ICD-11 was pushed back to 2015. Then 2017. The current plan is to bring out the new document in 2018.
The reclassification of being transgender is part of a larger overhaul of the ICD-10. And that process has been hampered by a lack of resources — not to mention the enormous scope of the task — according to an external review committee.
“There have been some delays due to the pioneering nature of the overall endeavour and the limited resources to achieve the visionary aims of many of its component goals,” said a 2015 report by the panel.
Dr. Jack Drescher, a member of a volunteer working group revising the ICD’s section on sexual disorders and sexual health, said most of the group’s work has been conducted electronically. “I don’t think they have a lot of funding for this process.”
When ICD-11 is published, being transgender will be listed in a different part of the document, potentially under conditions related to sexual health, said Drescher, who is a New York psychiatrist and a professor of psychiatry at New York Medical College. “So they’ll be diagnoses, but they won’t be mental disorder diagnoses.”
The medical community’s process of de-stigmatizing being transgender was also reflected in the last round of updates to the Diagnostic and Statistical Manual of Mental Disorders in 2013. The DSM, which is used by clinicians, replaced the diagnosis of “gender identity disorder” with “gender dysphoria.” The diagnostic class was also separated from sexual dysfunctions.
Some critics argue that transsexualism shouldn’t be considered a diagnosis at all — that to have an ICD code stigmatizes trans people by supporting the notion that it is an illness.
But Drescher said the thinking behind retaining the diagnosis was that in some health-care systems, things that don’t have ICD codes aren’t covered by insurance.
“The harm caused by loss of access to care would be greater than the harm caused by the stigma. I think loss of access to care would be a terrible thing for people who wish to access services in the future. And I think that would do more harm to more people,” he said.
“The diagnosis means that there’s something that people will do research on, using codes. National health systems can continue to pay for it.”
While the delay in publishing the revised ICD is causing frustration and resentment in some quarters, Drescher said “the politics of diagnosis is not something that comes up very often” in the treatment of the transgender.
“It’s important to many people, and I’m not saying it’s not important. But for many patients, it’s of little importance,” he said. “All they would like is relief from their distress.”