DES Action Advocates for DES Daughters

The US Preventive Services Task Force (USPSTF) proposed new national recommendations for cervical cancer screening in early September. Their draft recommendations suggest that women ages 30 to 65 receive either cytology (a Pap test) every three years or a high-risk HPV test every five years instead of the current recommendation to receive co-testing (cytology and an HPV test) every five years.

Except — once again — their recommendations don’t make it clear enough that DES Daughters are exceptions to these recommendations. Because of the higher risk of cancer caused by DES exposure, DES Daughters should get more frequent screenings, and they need to be sure their doctors know that too.

Reliable cervical cancer screening recommendations for DES Daughters do not exist because too little research exists to formulate specific, evidence-based recommendations for them (much less DES Granddaughters). Therefore newly proposed USPSTF guidance, like current recommendations from two dozen organizations, does not apply to those exposed to DES.

The USPSTF — an independent panel of experts who do not receive any payment to review evidence and develop preventive policy recommendations — has a public comment period before officially adopting its recommendations. During the public comment period, which ended on October 13, DES Action Executive Director Su Robotti and Community Manager Karen Calechman submitted a statement to the USPSTF. Read the full statement here.


DES: A population health tragedy

Symposium at Mt. Holyoke


Presenters at the Symposium in Boston on March 1 (left to right):
Kari Christiansen, NIH National Cancer Institute DES Follow-up Study Steering Committee The history of DES, DES Action USA; Linda Titus, Sci, D. Associate Director of the Hood Center for Children and Families Recent and ongoing research on DES, 3rd generation, what we might expect in the future; David J. Fine Attorney, of Council, Rubin Hays, PC DES Changing the law, how the law applies in reproductive health issues; Suzanne Robotti DES daughter, Executive Director DES Action, USA, founder MedShadow Foundation It’s not just DES


1. A History of DES by Kari Christiansen




2. Linda Titus, PhD, MA, Professor in the Departments of Epidemiology and Pediatrics at the Geisel School of Medicine at Dartmouth, explains the current research on DES.






This symposium was held at Boston University and was sponsored by the Maternal and Child Health in Action and Group on Reproductive Health and Rights.

For a video of Attorney David Fine and more about the symposium, click here.

About DES

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

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