DES Action USA

Diethylstilbestrol molecule ball

DES Action USA is a non-profit organization dedicated to providing information, support, and advocacy for individuals exposed to Diethylstilbestrol (DES), a synthetic estrogen that was prescribed to pregnant women from the late 1930s through the early 1970s. DES was initially believed to prevent miscarriages and other pregnancy complications, but it was later linked to a range of adverse health effects in both the women who took the drug and their offspring, known as "DES daughters" and "DES sons."

History

The origins of DES Action USA trace back to the late 1970s, when a group of concerned DES daughters began to organize in response to emerging research that linked prenatal DES exposure to a rare vaginal cancer, clear cell adenocarcinoma (CCA), in young women. This grassroots effort grew into a formal organization dedicated to raising awareness of DES-related health issues, advocating for research and healthcare policies that address the needs of DES-exposed individuals, and providing support to those affected.

Mission and Activities

The mission of DES Action USA centers on three core activities: education, advocacy, and community support. Through its educational efforts, the organization seeks to inform both the public and healthcare professionals about the risks associated with DES exposure and the importance of screening and monitoring for potential health complications. Advocacy work focuses on promoting policies that facilitate research into DES health effects and ensure access to appropriate care for those exposed. Community support is provided through resources like newsletters, support groups, and a helpline, offering a network of support and information sharing among DES-exposed individuals and their families.

Health Effects of DES Exposure

Research has identified a range of health effects associated with DES exposure. For DES daughters, these include an increased risk of clear cell adenocarcinoma, fertility issues, pregnancy complications, and a slightly increased risk of breast cancer after age 40. DES sons may experience non-cancerous epididymal cysts and, possibly, fertility issues, though the research is less conclusive. Additionally, there are concerns about the health effects on the third generation (grandchildren of those who were prescribed DES), though studies are ongoing.

Legal and Regulatory Response

The discovery of DES's adverse effects led to significant legal and regulatory changes. In the United States, the Food and Drug Administration (FDA) banned the use of DES during pregnancy in 1971. Subsequently, numerous lawsuits were filed against DES manufacturers by individuals affected by the drug, leading to landmark legal decisions and settlements. DES Action USA has played a key role in advocating for the rights of DES-exposed individuals throughout these legal challenges.

Current Status

Today, DES Action USA continues its work to support those affected by DES, promote research, and advocate for policy changes. The organization remains a vital resource for DES-exposed individuals, offering up-to-date information on research findings, health recommendations, and advocacy opportunities.

See Also

• Endocrine disruptors
• Pharmaceutical litigation
• Women's health