The DES Archives: Learning from a Public Health Tragedy
By Su Robotti — February 21, 2017
The history of the drug DES and the organization DES Action includes court battles that changed laws, grassroots organizing that grew into advocacy at the highest levels, the FDA’s failure to protect women, questions of DES’s role in gender and transgender identity, and reproductive rights violated on a massive scale, including more than 5 million women.
DES was a synthetic hormone given to pregnant women from the 1940s through the early 1970s. Poorly conducted research seemed to indicate that it saved pregnancies that were at risk of miscarriages, but better research proved the opposite. Worse, DES unexpectedly crossed the placental barrier so it affected fetal development. The mothers given DES had a much higher incidence of breast cancer decades later. Twenty-plus years after birth, DES daughters were found to have much higher rates of infertility. Many had poorly developed reproductive organs and some developed a rare vaginal cancer. Research is going on now following the grandchildren. (For more information on the issues facing DES mothers, daughters, sons, and grandchildren, please see the DES Action website.)
The lessons learned from DES’ tragic history will endure, now that documents, stories and other materials about it are housed at Smith College in the Sofia Smith Archives of Women’s History. The independent board of DES Action donated the files and an honorarium to pay for archiving them, before donating the organization as a whole to MedShadow Foundation. The DES board chose MedShadow because of the alignment of the two organizations missions. MedShadow’s purpose is to educate people about the side effects and long-term effects of medicines. Also, both organizations have a commitment to never accept money or support from pharmaceutical companies.
The archives are open to the public and to researchers. The online “Finding Aid” is in its final stages and will soon allow researchers to request documents via the website. The archives include letters from distraught DES mothers and families, correspondence with researchers, records from lobbying trips to secure funding for federal research on DES’ effects, and minutes from DES Action meetings.
The archivist, Jen Bolmarcich, identified two pieces as her favorites in the collection. One is a photo album of pictures created after an early DES Action meeting, likely in the late 1970s, with funny captions and general silliness. “It’s a wonderful glimpse of good friends having fun, while doing great work,” Bolmarcich said. Another is “Eli Lilly’s Dirty Tricks,” the name of a folder full of news clippings and correspondence whose name she kept in the official collection labeling because of “its honesty and sass.”
Every week, DES Action still receives phone calls from worried people who have just learned about possible DES exposure from decades or even a generation ago. What DES might cause in the future in the daughters and sons as they age is unclear. We are only just beginning to get a picture of the third generation’s challenges.
To continue to identify those who might have been DES-exposed,to support those who know about exposure, and to educate people about the harms of DES and the lessons learned, DES Action is holding a symposium at Mount Holyoke College on March 2, 2017. The symposium is presented in collaboration with the Reproductive Health, Rights and Justice Program, and the Women’s Studies Research Center of the Five Colleges Program (which includes Mount Holyoke, Smith College, Amherst College, Hampshire College, and UMass-Amherst). Speakers will include Julie Palmer, Sci.D., DES researcher from Boston University; Jen Bolmarcich; Kari Christianson, a long-time DES Action activist and researcher; Karen Calechman a DES daughter and Mt Holyoke graduate; and other DES-exposed activists.
The symposium will take place on Thursday March 2, 2017, from 5:30 – 7:30 pm, at Mount Holyoke College, in room Cleveland L2. Click here for more information.
The symposium is a culmination of decades of hard work by DES Action and its supporters.
Suzanne Robotti is the founder and president of MedShadow Foundation, an online nonprofit that informs the public about the side effects, risks, and benefits of medicine. She is also the executive director of DES Action USA, a nonprofit advocacy organization that provides information and educational resources to individuals exposed to the harmful drug diethylstilbestrol (DES).
My mom was given DES in 1947 when she went into premature labor in Sept of that year. She was due in Dec..I was born in early Oct. Although I never have had cancer I did have problems with my cervix and been monitored closely. My offspring seem okay.
I’m glad that you and your children are healthy! DES seems to have had the most impact when given early in the pregnancy. That’s when the reproductive organs are being formed.
I’m a DES daughter and my entire family has been effected. All because my mother took this to prevent miscarriage. My daughter, and now my grandchildren. My sister and brothers were exposed to endocrine disrupters.
It’s painful that DES has affected so many and all because of bad science. We are constantly updating the information at our website and your daughter and grandchildren can keep updated on new DES research on the site and, if they choose to become members of DES Action, through our newsletter, VOICE.
My name is Kel. I will be 55 years old this month. My parents had my growth stunted when I was around the age of 9 or so. From all that I’ve read I guess it was the drug DES. I’m 5’10” now but was projected to be well over 6′. As I read I’m finding out that back then tall girls weren’t in. Lol
I’m trying to find out if anyone knows any side affects that these tall girls are experiencing later in life. I have had issues with my bones and mental illness most of my life. If anyone knows anything please share. Thank you.
I an a DES daughter. My mom had 9 miscarriages, taking DES early on in the pregnancy if my older brother, me and my younger brother. My brothers seem to be OK, gave had children. I on the other hand had severe cramps ,abnormal pap at age 17. Had 3 oregnancies all requiring cervical cerclage for incompetent cervix each time. I suffered from infertility, hemorrhaged after my deliveries from placenta imbedded in uterine wall. Nearly died on the delivery table! Requiring several blood transfusions, and possible hysterectomy to stop hemorrhaging . I required a hysterectomy age 42 because if varicose ceins in uterus and ovarian veins. Now my children are showing effects. We DES exposed people need to have our health protected now and in the future for ys and our children!