Regardless, prenatal treatment with dexamethasone, which carries the risk of causing high blood pressure and glucose abnormalities, reduces the risk of the child having CAH at birth and therefore reduces the chance that a woman will have an intersex child. Because girls born with CAH tend to have a higher rate of lesbian identity and behavior, prenatal dexamethasone also makes an adult lesbian identity less likely.
The treatment, which is off-label (meaning it’s not approved by the FDA) has been used for twenty years, but it’s in the news because, as Roan writes:
…a consortium of medical groups led by the Endocrine Society will release updated guidelines on treatment of congenital adrenal hyperplasia that acknowledge the controversy. The guidelines are expected to describe prenatal dexamethasone therapy — first used about 20 years ago, but now with increasing frequency — as experimental and reiterate that the standard approach for cases of ambiguous genitalia is to perform corrective surgery.
But they’re not expected to discourage research on the treatment.
Roan gives the issues an even-handed treatment in the article. But the piece mostly consists of those who oppose the therapy pointing out its many enormous throbbing problems. While the chief controversy is that the treatment amounts to an attempt to choose a child’s orientation, that’s just for starters. Other problems? Oh, the fact that women receiving this treatment haven’t just found out that they have a child with CAH; they’ve found out they personally carry the gene that causes CAH, which means they’ve got a 12.5% chance of having a child with CAH. As Roan quotes Columbia psych professor Heino Meyer-Bahlburg as saying, “to effectively treat one fetus, you have to treat seven others.”
For pregnant mothers, this amounts to gender engineering Russian Roulette. If a parent believes that it’s so important to have a typically-gendered child that he or she is willing to take a six in seven chance that they’re treating a child who wouldn’t even have a condition that, if she had it, wouldn’t even result in an intersex condition in the majority of children born with it, don’t you kind of have to question what other kinds of Russian Roulette they’re going to play with their kid’s identity down the road, both sexual and otherwise?
Then, of course, there’s the fact that the Endocrine Society-led consortium is expected to reiterate that “the standard approach for cases of ambiguous genitalia is to perform corrective surgery,” an assertion which makes me, as a sex educator, Linda Blair it a bit, I’ll admit, for reasons which can easily be made obvious.
Roan’s article has numerous quotes from Alice Dreger, who writes eloquently on the topic elsewhere. But the main thing missing is a quote from doctors actually administering this therapy. I’d like to know what their rationale is.
The closest Roan gets to talking to a doctor who administers dexamethasone treatment is quoting the website of Dr. Maria New, a Mount Sinai School researcher who declined to be interviewed for this article. Interestingly, New didn’t mind talking to the New York Times last month about dexamethasone therapy for adult women with CAH, which she describes as “cheap and easy.” Roan’s quote from New’s website says the treatment is safe and effective, and relates a study by New, Meyer-Bahlburg and others, that acknowledges the treatment’s potential for:
“…reducing traditionally masculine behavior in girls. Prenatally treated girls were more likely to be shy, they wrote, while untreated girls were ‘more aggressive.’ …Moreover, the authors said, failure to provide prenatal therapy seems to lead to traditionally masculine gender-related preferences in childhood play, peer association and career and leisure choices.”
Meanwhile, Dr. New, who is a highly respected pediatric endocrinologist, was decreed a douchebag by Bitch Magazine, where a commenter rightly took them to task for presenting the experimental dexamethasone treatment, and New’s research, as only relating to sexual orientation and masculine behavior in girls. CAH, as stated above, is NOT an intersex condition in most people. It can also result in all sorts of “other problems” besides masculine behavior — that is to say “actual problems.” Infants with CAH, for instance, are at risk for dehydration, adrenal crisis and cardiac arrhythmia; it’s not a simple equation of “have CAH, turn out lesbian,” or even “have CAH, be intersex.”
Therefore, treating CAH isn’t necessarily about homophobia, intersex-phobia, or fear of female gender-norming, right?
Yeah, well… in that, Bitch kindly points out that Dr. New dug her own grave, as quoted in the Bioethics forum:
“The challenge here is… to see what could be done to restore this baby to the normal female appearance which would be compatible with her parents presenting her as a girl, with her eventually becoming somebody’s wife, and having normal sexual development, and becoming a mother. And she has all the machinery for motherhood, and therefore nothing should stop that, if we can repair her surgically and help her psychologically to continue to grow and develop as a girl.”
Two final asides: San Francisco writer Thea Hillman writes movingly in her book Intersex (For Lack of a Better Word) about being diagnosed with CAH; some of the CAH-related aspects of her memoir are covered in this review reproduced on her website, originally from The Electronic Journal of Human Sexuality.
Lastly, as mentioned above, dexamethasone, a steroid usually used to treat arthritis, is completely off-label when it comes to any prenatal use. Most drugs are. “Off-label” means the FDA has not approved it, but this doesn’t mean doctors don’t use it that way; in fact, in the United States it’s completely legal and considered ethical to use drugs off-label, though it’s illegal for pharmaceutical companies to promote off-label use. Because most drugs are not tested on children, half to three-quarters of pediatric pharmaceutical use is prescribed off-label, according to NPR.
Dexamethasone is also used by mountain climbers to survive at extremely high altitudes. Colloquially called “dex,” it figures prominently in Jon Krakauer’s 1997 book Into Thin Air, about the 1996 Mt. Everest Disaster, and, even better, in the awesome C-movie Vertical Limit, where a tomboyish Robin Tunney starts to die quickly in a series of lovingly-filmed, scenery-chewing heaving gasps for lack of dexamethasone. This movie serves as the excellent basis for a drinking game in which you and your (hopefully already drunk) companions take a shot every time someone vigorously says the word “Dex!”