A Mother’s Guilt: DES, a Tragedy of Three Generations

By Hannah Klein Connolly

A week ago, over 3,000 miles away, my fate and that of many women diagnosed with breast cancer resided in Boston in the hands of a judge, a jury, and 42 lawyers, 40 of whom worked for pharmaceuticals. Perhaps I am being a bit overly dramatic; it’s how I felt. The case was Fecho v. Eli Lilly and was brought by four sisters who had all been exposed to DES in utero and all had developed breast cancer. The fifth sister was not exposed, and did not develop breast cancer. Fecho v. Eli Lilly (the major manufacturer of DES) was as much about emotion as it was about physical injury, corporate accountability and ultimately, about vindication. The trial started on Tuesday, January 8th and by mid-day Wednesday 9th Eli Lilly, the defendant, reached an out of court settlement with the plaintiffs and agreed to pay an undisclosed financial settlement but not to admit to any guilt.

Over 50 years ago, my pregnant mother was prescribed diethylstilbestrol (DES), a “miracle” drug manufactured by several companies with Eli Lilly owning the largest market share. DES, a “cash cow” for the drug companies, was regularly administered to women to prevent miscarriages–my mother had already had four miscarriages when she was prescribed the drug. Confined to complete bed-rest, my mother diligently took her medication for the duration of the pregnancy. This in spite of the fact that, some 9 years earlier, a study in the American Journal of Obstetrics and Gynecology revealed women taking DES suffered a higher number of miscarriages, revealing that the “Bigger and Stronger Babies” marketing claim of the 1950s was based purely on fiction. However, the drug was still prescribed to my mother, as it was for millions of other women around the world until 1971, when it was found to be linked to a rare form of vaginal cancer in the daughters born to these women.

What kind of a company does this? What kind of a company creates a drug, markets it to millions of women, ignores evidence of serious side effects, and continues day in day out to manufacture it regardless of the devastating impact research suggests it may have on the health of generations of women? After years of grappling with these questions, I can offer no simple answer.

In 1971, a report was published in the New England Journal of Medicine linking DES to a rare vaginal cancer. Still, this same company, aware that their product did not work as claimed and was a carcinogen, did not remove it from the shelves. By 1979, the house of cards continued to tumble. Eli Lilly lost the first court case linking DES to a vaginal cancer. Before and after that time, numerous studies and research has shown that DES exposed daughters have reproductive issues and auto-immune diseases at a higher rates, and are 40% more likely to get breast cancer in their 40s than the average woman (1 in 25). Even at the 2011San Antonio Breast Cancer Symposium, Dr. Robert Hiatt, from UCSF, presented a slide from a new report from the Institute of Medicine, Breast Cancer and the Environment: A Life Course Approach, to thousands of doctors, researchers, and advocates detailing the undeniable connection between DES and breast cancer – I still have the slide on my smart phone!

I have lost both my breasts and my ovaries. I’ve given birth to two preemies. I have auto-immune issues too numerous to count and whose names contain too many letters to pronounce. As this most recent case progressed, I’ve reflected a lot. I’ve felt angry, stunned, anti-climactic, and now sad. And, I realized yesterday that when I first met with the lawyer a few years ago, my goal in being involved in this lawsuit was to make sure this never happened to anyone again, but that sentiment got lost last week and I’ve found myself wading through the important process of sorting through my myriad of feelings.

Cases, including mine, are still pending because these drug companies refuse to admit fault and fail to assume liability for peddling a drug that has caused so much emotional and physical devastation. Over the years DES was on the market, these 40 drug companies have made huge, fat, profits. Eli Lilly has been in this mediation position before. Of course, financial compensation will help DES exposed daughters and will reimburse a fraction of the pain and suffering. But I want more. I want acknowledgment of accountability and a commitment to change.

DRUG COMPANIES MUST RIGOROUSLY TEST PRODUCTS. DRUGS NEED TO BE PROVEN SAFE BEFORE THEY REACH CONSUMERS BECAUSE IT’S NOT MY JOB TO DEMONSTRATE THAT THEY ARE HARMFUL TO MY HEALTH.

Big Pharma stands in a powerful and important place and confronts a serious opportunity to heal and restore the faith of hundreds of thousands who depend on their products. They have an opportunity to move forward and commit to good science practiced with integrity. I want Lilly to be held accountable for mistakes of the past (and possibly future – with my daughter). I want an apology. And most of all I want change so that this never happens again. If this case ends up being the hand-slap that warns all others, so be it. I certainly hope it is. Even so, cost to women should never have been so great– all from an “untested” product that has cost too many of us our breasts, our dignity, and our humanity.

Until these companies currently on trial take responsibility for their actions, I will continue to fight for accountability. I will fight for justice – not merely financial vindication—in the name of all our mothers, ourselves, and our daughters.

This entry was posted in BCA News.