Campaign to Restore Funding for the DES Follow-up Study

The only long-term scientific study on effects of DES exposure has been cut to a fraction of previous years, and funding must be reinstated soon for the study to continue. DES Action USA is calling on our members, families and friends to take action and support our Campaign to Restore Funding for the DES Follow-up Study.

The DES Follow-up Study, a project of the National Institutes of Health and the National Cancer Institute, has researched a multi-generational cohort of DES-exposed people for more than 30 years. Research results on effects of DES exposure are fundamental to addressing health issues of DES-exposed individuals. These findings have broader implications too, since DES is an endocrine disrupting chemical (EDC) and everyone is an EDC-exposed person.

The significance of this study cannot be overstated. We have a gold-standard scientific study underway, with information on a DES-exposed group (including dose and timing, since DES was prescribed as a pharmaceutical) and a non-exposed control group. This study has provided invaluable information about intergenerational effects of DES and other EDCs – yet many questions remain about DES Daughters, we know far too little about DES Sons and DES Grandchildren, and the Great-grandchildren are yet to be studied at all.

If we don’t restore funding and get this study back underway NOW, we will have lost an opportunity that is not just once-in-a-lifetime, but truly once-in-multiple-generations and never to be replicated.

How you can help:

  • Contact your Senate and House members of the Appropriations Committee and ask them to include funding for the DES Follow-up Study in the Federal Budget.
  • Suggested letter “Suggested Letter for Funding Restoration“, please write what is in your heart and mind.
  • List of Appropriations Committee members “List of Appropriations Committee members” with email and phone.
  • Let DES Action know if you are active with other organizations that care about health and/or endocrine disrupting chemicals (EDCs) so we can ask for their support too. eMail

DES Action USA members and supporters across the country are reaching out to their elected officials, and we invite you to join them in taking action to support study funding. Thank you!

DES Has Affected Three Generations So Far

Diethylstilbestrol (DES) was the first synthetic estrogen to be created. Never patented, it was cheap and easy to produce, so DES was made by hundreds of drug companies in the U.S. and around the world. DES was prescribed to millions of pregnant women in the mistaken belief that it could prevent miscarriage. It did not work but instead, DES harmed the mothers, the children born of those pregnancies and possibly the grandchildren and beyond.

Read more about DES

Updated Gynecologist’s Guide

We’ve updated the Gynecologist Guide to print out and take to your next appointment. It includes the latest findings, insurance codes for DES Daughters and the new guidance that DES Daughters should have annual PAP tests. You can download it here.


  • Subscription to VOICE quarterly newsletter – everything new about DES, endocrine disruptors and their effect on people.
  • Access to the full archives of VOICE newsletters – catch up on the past year or read the very first issues from 1988!
  • View our library of videos with interviews of DES writers, films and researchers
  • DES Daughters can join our private, online support group just for Daughters
  • DES Sons and Grandsons can join our private, online support group just for Sons and Grandsons
  • Access to our list of doctors that members have recommended

Join here.

Watch our FB Live Videos

DES Action Executive Director Su Robotti interviewed Dr. Nita Karnik Lee on June 17, 2018. Dr. Lee is an ob/gyn with a specialty in oncology. She has done DES research with Dr. Arthur Herbst’s group at the University of Chicago.

Members can access our library of Facebook Live videos by logging in and going to the members content, video interviews section. In December 2018, Executive Director Suzanne Robotti and Community Manager Karen Calechman held a virtual Town Hall, answering questions from members about DES and taking a look back at the successes of our 40th anniversary year. In November, Karen interviewed Dr. Gary Levine, Radiologist and Breast Screening Specialist, focusing on issues specific to DES Daughters, including the difficulty of finding tumors in women who have dense breast tissue.

Previous interviews were with DES researcher Linda Titus (September); former Executive Director Fran Howell and former Program Director Kari Christiansen (August); Susan Helmrich, DES Daughter and co-founder of DES Cancer Network (July); Dr. Nita Karnick Lee, an ob/gyn with a specialty in DES and oncology (June); DES and Gender researcher Jacquelyne Luce, PhD (May); with DES lawyer Michael London (April); with author Susan Bell (March); with Peabody Award-winning documentarian Judith Helfand about her movie A Healthy Baby Girl (February); and with Dave Fuehrer, creator of the StupidCancer app. Dave’s team added DES-exposed as one of the communities on the free app (January). Click for videos.

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