The Riddle of Gender - Deborah Rudacille [143]
The ability of DES to cause cancer was also discovered at a time when carcinogenicity was a primary focus of toxicological testing. The Delaney Amendment to the Food, Drugs and Cosmetic Act, passed by the U.S. Congress in 1958, required manufacturers to furnish data establishing the carcinogenic potential of a product prior to its marketing. From the fifties through the eighties, carcinogenicity was a primary concern of regulatory agencies worldwide. DES was a known cancer promoter, as were natural estrogens. As early as 1938, studies showed that mice and rats exposed to DES developed mammary tumors. However, DES was approved by the FDA seventeen years before the passage of the Delaney Amendment. In 1941, all but four of the fifty-four academic experts who had reviewed the data submitted by twelve pharmaceutical companies wishing to market the drug approved DES as a “safe” drug. This despite the existence of a 1939 editorial in the Journal ofthe American Medical Association, titled “Estrogen Therapy: A Warning,” cautioning against the “long continued and indiscriminate therapeutic use of estrogens…. The possibility of carcinoma induced by estrogens cannot be ignored,” the author of the editorial writes. This Cassandra-like prophecy was ignored. However, by 1971, when DES was proved to be the cause of vaginal cancer in young women who had been exposed to DES in utero, the carcinogenic potential of xenobiotics had become the primary concern of toxicologists and regulatory agencies. DES thus fit perfectly into the “cancer” paradigm of the toxicologists as well as the “evils of medical patriarchy” paradigm of women’s health advocates. An advocacy group, DES Action, was formed in 1975 by a DES mother, Pat Cody, and in 1982 the DES Cancer Network, “an international, non-profit, consumer organization that addresses the special needs of women who have had clear cell adenocarcinoma of the vagina or cervix,” was founded. These advocates worked hard to spread the news about DES and lobbied for research funding to study its effects. “DES was one of the prime movers behind the nascent women’s health movement back in the seventies. Our Bodies, Ourselves, that kind of thing,” says Dana Beyer. “DES Action was formed as the political clout of women was beginning to change, in the seventies, so they focused on women’s health. It was conceived as a mother-daughter thing because of the cancer—vaginal cancer, which is not common. That’s what was weird and caused people to make the connection. If it had been a slight increase in uterine cancer, it would have gone unnoticed. So that was lucky, I guess. So they formed this organization and they’ve worked very hard, lobbying Congress and drafting female representatives who support them, getting House appropriations to get the National Cancer Institute to fund this [DES research]. That’s where the activism has been.”
The bulk of the educational efforts were directed at mothers and daughters, and focused on cancer risk. Women who knew that they had been exposed to DES were told to inform their health care providers, particularly gynecologists, about their exposure, and obstetricians and family practitioners who had administered DES to pregnant women were asked to inform their patients that they and their children had been exposed. Many failed to do so. Apfel and Fisher attribute the “subdued, even paralyzed responses of practicing physicians” to the “fear of facing their own mistakes, of failing in the eyes of peers and younger colleagues, of being criticized, regulated and even sued.” They conclude that “most doctors go out of their way to avoid concluding that a patient’s problem has been iatrogenically induced.” In the case of DES, that resistance to assuming responsibility has been shared by the pharmaceutical companies that produced the drug, and by the research establishment as a whole, which