Advocating for Clarity: DES Action USA’s Call for Inclusive Cervical Cancer Screening Recommendations
DES Action would like the US Preventive Services Task Force (USPSTF) guidelines to make clear that women exposed to DES in utero should receive cervical cancer screening every year, regardless of age.
The importance of regular cervical screening for DES Daughters was well covered in the VOICE Summer 2017 newsletter, explaining that reliable cervical cancer screening recommendations specifically for women prenatally exposed to DES do not really exist. The guidance outlined in this issue had not changed in decades because too little research exists for medical organizations to confidently formulate a more specific, evidence-based recommendation for DES Daughters (much less for DES Granddaughters). Therefore, USPSTF guidelines for cervical cancer screening in non-exposed women do not apply to those with a history of DES exposure.
In 2017, Karen Calechman, then Community Manager of DES Action, USA, took action to change this oversight. Karen sent detailed comments to the USPSTF asking that the proposed guidelines include exceptions for women exposed to DES in utero. As a result the DES exception was mentioned in both the Clinician Summary and the Recommendation Information sections. Those DES Daughters who knew to ask for more frequent screening would now have support within the USPSTF guidelines. However, the USPSTF did not highlight the exception in Section A of the 2018 guidelines as requested.
In 2025, the USPSTF reviewed their guidelines again. The new draft, which is expected to take effect in 2026, includes the recommendations on DES that were added in 2017. During the public comment period, Suzanne Robotti, DES Action Executive Director, made two significant additional requests on behalf of women with in utero exposure to DES. She requested clarification that the exception applies to this group regardless of age and that the guidelines be amended to recommend annual screening — not every three or five years.
In the letter submitted by DES Action during the comment period, which ended January 2025, we made the following requests.
“Based on both historical research and new research, DES Action USA urgently requests that the identification of all women exposed to DES in utero as a higher-risk population be included in all Clinical Considerations (Patient Population Under Consideration, Assessment of Risk and Timing of Screening) for annual cervical cytology regardless of age and regardless of hysterectomy status.”
After including the recommendations of Arthur Herbst, MD, long the leading expert and NIH researcher on DES’ effects, we added the following support information that we did not have in 2017:
“However, the French physician, Michel Tournaire, at Paris Hospital who has studied DES for years, authored an article in the Journal of Gynecology Obstetrics and Human Reproduction (DOI: 10.1016/j.jogoh.2023.102630) in 2023 that addresses this issue.
Tournaire and his coauthors reviewed and analyzed the medical records of two sets of patients seen at the Gustave Roussy Institute, a leading European cancer center, in an attempt to come up with some possible screening guidelines. Based on their study findings, Tournaire, et al, proposed new screening recommendations for DES Daughters: high-risk HPV testing and cytology with both cervical and vaginal samples, either every year or at least not going longer than three years between screenings. They recommend this approach continue after age 65 and after hysterectomy.
We hope the USPSTF will review our comments carefully and include them in the guideline.”
References
- Final Recommendation Statement: Cervical Cancer: Screening. USPSTF website.
- Cervical Cancer: Screening. USPSTF website.
- Late cervical and vaginal clear cell adenocarcinoma in women exposed in utero to diethylstilbestrol: Evaluation and screening. 2023.