Suggested Letter for Funding Restoration


I am contacting you today as one of your constituents  and on behalf of DES Action USA in support of recommended report language for the Fiscal Year 2023 Labor, Health and Human Services, and related agencies bill (FY 2023 LHHS) urging the National Institutes of Health (NIH) to continue to support continued investment at previous years level in longitudinal cohort studies on diethylstilbestrol (DES) exposure.

Established in 1978, DES Action USA supports women, sons, daughters, and grandchildren affected by exposure to DES, an endocrine-disrupting chemical which was prescribed to women between 1940-1971 to prevent miscarriage, premature labor, and other pregnancy complications.  Unfortunately, not only was DES ineffective in preventing these complications, but it also was linked to a rare clear cell adenocarcinoma in women and is now known to be an endocrine-disrupting chemical (EDC) that can potentially cause a variety of cancers and other health effects in the daughters and sons of exposed women.  Furthermore, research suggests that the effects of exposures may persist and cause health effects in the grandchildren of exposed women and future generations.  Recognizing the critical need for knowledge about the multigenerational health effects of DES exposure, NIH established the DES follow-up study, combining research studies to create a coordinated longitudinal cohort that has made important discoveries about the health effects of DES exposure in the sons and daughters of exposed women.

We are now at a critical point in time; as a patient community we need to know more about the potential persistence of health effects across generations so that our children, grandchildren, and future generations have valuable information about their own health risks.  However, the funding for this study has been cut so that the study is now limited to a passive study looking only at cancer and causes of death records. There are so many more effects DES as an endocrine disrupter has and we need to know what they are for everyone’s health. DES Action USAtherefore worked with the Endocrine Society, an 18,000 member professional medical and scientific specialty society devoted to advancing hormone research and excellence in the clinical practice of endocrinology, to support the following report language that encourages the NIH and National Cancer Institute to continue to prioritize the DES Follow-Up study and recognize the value of such cohort studies in understanding the transgenerational health effects of environmental exposures.

Analyzing Transgenerational Health Effects of Environmental Exposures The Committee recognizes that exposure to endocrine-disrupting chemicals (EDCs) impacts public health, including the growing prevalence of obesity, infertility, and cancer. The Committee is also troubled by the fact that such exposures may have heritable effects, affecting the health of not only the exposed individual, but also their children and potentially their grandchildren and future generations.  Longitudinal cohort studies such as the Diethylstilbestrol (DES) Cohort can help us understand the effects that such exposures may have across generations, and we encourage NCI and other NIH Institutes and Centers to work collaboratively to support the continuance of such cohort studies and establish new cohorts. These studies will broaden our understanding of how our environmental exposures and experiences throughout the lifespan can result in heritable effects that may affect future generations.  The Committee requests that NIH issue a report within 120 days of enactment of this Act, describing their plans for existing or new cohort studies that can address transgenerational effects of EDC exposures, including the continuance of the DES longitudinal cohort.

As a constituent and member of the DES Action community, I hope that you will support this language for inclusion in the FY2023 LHHS bill. Thank you for your consideration of this request.


cc: DES Action USA