DES Action Urges Task Force to Highlight DES Exposure in Cervical Cancer Screening Recommendations

Advocating for Clarity: DES Action USA's Call for Inclusive Cervical Cancer Screening Recommendations

By Su Robotti and Karen Calechman

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 30-65 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.

As we noted in the Summer 2017 issue of the VOICE, reliable cervical cancer screening recommendations for women prenatally exposed to DES do not really exist. The guidance outlined in the last issue has 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 DES Granddaughters). Therefore newly proposed USPSTF guidance, like current recommendations from two dozen medical and consumer advocacy organizations, does not apply to those exposed to DES.

One advantage of the USPSTF — an independent panel of experts who do not receive any payment to review evidence and develop preventive policy recommendations — is that it has a public comment period before its recommendations are officially adopted. During the public comment period, which ended on October 13, anyone could provide feedback on the proposed recommendations.

On behalf of the DES-exposed community, DES Action Executive Director Su Robotti and Community Manager Karen Calechman submitted the following statement to the USPSTF:

“As the Executive Director of DES Action USA and the Community Manager of DES Action USA, the non-profit organization that identifies, educates, empowers and advocates for the DES exposed, and as DES Daughters, we note that the few portions of the population that are not included in this recommendation are summarized in fewer than 3 lines.

We urgently request that the identification of higher risk populations be included in the primary recommendations (in the part in the “A” and the first “D” recommendations) so that clinicians know immediately who is a higher risk and therefore will click to ‘Clinical Considerations.’

Here is the description of those who are not included in the primary recommendation because of higher risk. This could easily be included as exceptions in the primary recommendations: ‘This recommendation statement applies to asymptomatic women, regardless of their sexual history. This recommendation statement does not apply to women who have been diagnosed with a high-grade precancerous cervical lesion or cervical cancer, women with in utero exposure to diethylstilbestrol, or women who have a compromised immune system (e.g., women living with HIV).’

It would also be prudent to add within Clinical Considerations that this population needs to discuss their risks with their physician, as their risk may be higher and they may need more frequent screening. The link to Clinical Considerations should be more prominent and in bold.”

Clinicians need to prominently see the populations that are exceptions to the recommended guidelines. The DES-exposed community is one of the highest-risk populations in the US. DES Action USA hopes the USPSTF, a federal body that creates policy for the entire US population, will make it clearer which populations are at higher risk.