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The Dex Diaries, Part 8: DES Lessons Not Learned

A woman exposed to DES in the womb speaks to prenatal dexamethasone for CAH.

This entry in "The Dex Diaries" series is written by Fran Howell, Exeuctive Director of DES Action USA, and a "DES Daughter." Fran composed this piece for the DES Action VOICE Newsletter, and has given me permission to reprint it here. As Fran suggests, the parallels between the history of DES and the history of prenatal dexamethasone for CAH are striking--depressingly so.

A constant thought running through the DES community is: “What happened to us should never happen again. Don’t let the confluence of drug company greed, lax government regulation and dissemination of faulty research to doctors come together again in another tragedy.” But according to a paper published in the Journal of Bioethical Inquiry, sadly, history is repeating itself.

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Lead author Alice Dreger, professor of clinical medical humanities and bioethics at Northwestern University Feinberg School of Medicine, traces the history of dexamethasone use by pregnant women. The paper is co-authored by Ellen K. Feder of American University and Anne Tamar-Mattis of Advocates for Informed Choice.

DES and dexamethasone are completely different drugs, prescribed for different reasons. DES is a nonsteroidal synthetic hormone claimed not to affect the fetus (until shown that it did), whereas dexamethasone is a synthetic steroid given to women carrying babies at risk of congenital adrenal hyperplasia (CAH). This condition of the endocrine system can result in female fetuses being born with ambiguous genitalia (intersex), tomboyism and lesbianism. Dexamethasone use is intended to alter the course of fetal sexual development.

But is it safe – especially for the child? Dreger, Feder, and Tamar-Mattis raise concerns about the reliability of dexamethasone research being done in the U.S. They describe what they call less than scientific protocols in use by one clinician, a major proponent of the treatment. They also question the ethics of this researcher’s nonprofit foundation website which serves as direct to consumer marketing. Dexamethasone is proclaimed to prospective patients as “safe for mother and child,” even as that researcher is concurrently conducting studies into the safety and efficacy of prenatal dexamethasone treatment.

How is this possible? Dreger, Feder, and Tamar-Mattis learned from the Food and Drug Administration that “regulations allow a clinician to promote as ‘safe and effective’ experimental off-label drug uses – even if intended to alter fetal development – so long as the clinician does not simultaneously work for the drug maker.” They call this “a major failure of the layered systems designed to protect subjects of research, especially pregnant women and their fetuses.”

Meanwhile, a Swedish dexamethasone study was halted due to concerns about adverse effects including developmental delay, hypospadias, hydrocephalus, mental retardation and severe mood fluctuations resulting in hospital admission. These serious medical problems developed in a small group of children treated prenatally with dexamethasone.

With lessons supposedly learned in the DES tragedy, it’s fair to ask why concerns are now apparently going unheeded about another drug being given to pregnant women. According to Dreger, Feder, and Tamar-Mattis, “We find ourselves wondering whether it is the assumption that ‘we’ll never do that again’ that paradoxically has blinded many clinicians to the striking parallels between DES and prenatal dexamethasone.”

My thanks to Fran Howell for this article and especially for bringing the issue of prenatal dexamethasone for CAH to DES Daughters and Sons. For some history of DES, see this page at the CDC. Note, however, that the CDC's history does not mention that some doctors continued to use DES on pregnant women into the 1980s, and that it took nearly 30 years after the first cancer report for the FDA to withdraw DES from the human market. Even then, the FDA did so only because the drug makers decided to finally ask the FDA to do so. The dangers of DES became publicly known because of the numbers harmed and because of activists who pushed Congress hard. How long will it take for pregnant women at risk for CAH-affected offspring to all be told the truth about what we know about the "safety" and "efficacy" of prenatal dexamethasone for CAH?

Alice Dreger, Ph.D., is a Professor of Clinical Medical Humanities and Bioethics at Northwestern University's Feinberg School of Medicine in Chicago.

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