Sick and tired of bad news? Longing to read something uplifting? Not feel-good sentimentality or fantasy but the story of a crisis faced with integrity, resourcefulness, and unity by victims who win, not a fairy tale “victory” but understanding and progress and influence beyond what anyone expected? That’s the story I just finished reading in DES Voices: From Anger to Action by Pat Cody.
If you’ve lived in and out and around Berkeley for more than 30 years, you knew Pat Cody as the virtually invisible co-founder and partner in Cody’s Books on Telegraph—usually in the back office managing the business, or writing articles for the business division of the Economist to help make up the chronic deficit typical of independent bookstores. Or you might have gone to school with one or more of her four children: Martha, Anthony, Nora and Celia. Some of you medical folks would have worked with her in the Berkeley Free Clinic, which she co-founded in the late sixties. We all ran into her at anti-war demonstrations.
Fewer of us knew her as co-founder of a 30-year-old international movement that started with a personal tragedy.
In 1971, on a back page of the San Francisco Chronicle, Pat read a short item titled “Drug Passes Cancer to Daughters.” Pat’s heart sank as she recognized the name “Stilbestrol,” the drug she had been prescribed in 1956 to—supposedly—prevent miscarriage when she was carrying Martha. Further articles brought more bad news about the effects of DES (diethylstilbestrol). In addition to abnormal vaginal tissue, some DES daughters had uterine, ovarian or tubal malformations, rendering them incapable of bearing children. They were at higher risk for life-threatening ectopic pregnancies. At the time, few doctors knew anything about DES, let alone the special exam needed to recognize signs of trouble. Unlike the foreshortened limbs of thalidomide children, this damage was hidden until it manifested itself in some health crisis.
From 1938 to 1971, an estimated 4.5 million women in the United States had been given DES, resulting in births of over 2 million DES daughters at risk for reproductive malfunction, cancer, and a number of other health problems. Yet the first warnings about DES dangers, and doubts about its effectiveness, were published back in 1939, only a year after this synthetic estrogen was created. In 1953, before Martha was even conceived, a definitive landmark study had concluded that DES was ineffective in preventing miscarriage.
Nevertheless, its use continued to spread to Europe and Australia. In South America it was sold over-the-counter! In 1971, even after articles in medical journals confirmed its harmful effect, some doctors were still prescribing it. Uses of DES went beyond the discredited claim that it prevented miscarriage: DES became an additive in livestock feed. In Australia, well into the eighties, it was given to girls who showed signs of growing too tall to “find boyfriends.” (Surprise! Many of the prescribing doctors in Australia owned shares in the company that imported DES from the U.S.)
In 1974 Pat gave Martha the frightening news, then found an informed doctor who confirmed that Martha had pre-cancerous genital tissue. Pat and Martha wept, paralyzed with grief and fear.
But not for long. Pat called a meeting—where else? on the mezzanine of Cody’s Books on Telegraph. About a dozen people came, some of them health professionals Pat knew from her work at the Free Clinic and on the Berkeley Health Advisory Board. The meeting ended with the group naming themselves DES Information Group. They soon learned that similar groups were forming in other parts of the country. They joined to form DES ACTION, soon an international network of affected women.
During the thirty years of DES Action, more bad news kept coming out: DES mothers suffer higher rates of breast cancer; some DES sons manifest genital abnormalities; there are some signs that effects of DES may persist to the next generation—grandchildren.
The good news is the 30-year struggle pursued by DES Action. Pat’s book gives details of incessant, effective work that stands as a model to be studied by anyone wanting to organize grass-roots action. This work breaks down into overlapping categories: research, education, fund-raising, legal action, legislative action.
“We all had to learn to read medical journals,” Pat writes, and keep up on the latest findings. It was like learning a new language, but it wasn’t as hard as historical research that included prying information out of medical records withheld by doctors from the very women affected. “There seem to have been an unprecedented number of fires destroying records in medical offices during the sixties and seventies,” writes Pat, with a sarcastic tone unusual for her.
Thus, education began with self-education in order to spread information to other women. But it went far beyond the women affected, to education of doctors (many of them still in denial, through fear of liability suits), to lawyers, supplying them with legal packets on which to base suits against pharmaceutical companies like Eli Lilly, major manufacturer and promoter of DES. (Many of these cases have been settled out of court, with confidentiality gag rules. “That’s why,” Pat writes, “DES remains a ‘silent epidemic.’”)
Many stories in the book illustrate the coming together of research, education, and informed action. Here’s a favorite of mine.
In 1996 the Eli Lilly company (still making DES at the time) co-sponsored a dinner to honor professionals in women’s health, among them three prominent members of Congress. Pat writes, “DES Action members wrote to all the prospective honorees asking them not to accept or attend.” All three legislators—Schroeder, Waxman and Snowe—declined the honor and issued statements to the press backing DES Action. They stayed home, but DES Action members showed up in an informational picket in front of the hotel where the banquet was held. They passed out leaflets to the attendees, urging them not to let Eli Lilly use their presence to “white-wash their image.” Pat writes, “We heard later from a Washington insider that the story of our picket was ‘all over D.C.’”
DES Action, wisely, has never gotten hung up on fund raising—grantsmanship is an activity that can swallow up time and much of the money it wins. Nevertheless, DES has been awarded modest grants based on clearly stated purpose and need. Mostly it depends on private contributions and many hours of volunteer work. With its slim budget DES has progressed from attending conferences to convening conferences, from advising legislators to creating legislation mandating funding for DES education and research—passed by the House of Representatives in 1992.
I asked Pat the secret of the DES Action record of results and respect from agencies like the Center for Disease Control and the National Cancer Institute. She gave me a one-word answer, “tenacity.” Example: in 1978, when a small delegation from DES Action went to see the Secretary of Health, Education and Welfare, they were told his appointment calendar was full. “They said, ‘We will sit here until the Secretary can see us.’ By the end of the day the Secretary had agreed to set up a federal DES Task Force.”
It’s tempting to quote more such anecdotes, or to reproduce the superb bibliography of books and articles referenced to back up every assertion, or the long lists of people Pat insists on crediting for their help, or quotations from articles about DES. But by far the most moving voices in this book, quoted anonymously, in italics, are excerpts of letters from DES daughters, mothers, sons, fathers, husbands, doctors. These letters tell not only of fear and pain, guilt and frustration, but of learning to talk back to doctors, to question, to take charge of their own health care. (They created echoes in my mind of the abuse, threats, and insults from bullying doctors I endured throughout my menopausal decade for my refusal of Hormone Replacement Therapy—now discredited as useless and harmful.)
Big media is always telling Pat that DES is “old news,” obsolete for the next generation. We can’t be sure of that. We can be sure that medical hubris, pharmaceutical companies’ greed, and bio-technology tampering with the wider environment continue to pose risks in the name of “progress.” This book not only provides an impressive model for effective grassroots action, it’s also a great story. Pat calls it “my adventure story, an adventure in opening doors to understanding research and then using that knowledge to comfort the afflicted and afflict the comfortable, as the saying goes.”
DES Voices (232 pages, $9.95) is
available on line from www.lulu.com.
Don’t forget to check out www.desaction.org.