DES Action USA records
Scope and Contents
The DES Action USA Records consist of 9.75 linear feet, dating from 1938-2016, with the bulk of the records dating from 1978-2014. The collection is comprised primarily of records documenting the activities, programs, and projects of DES Action USA over a forty-five-year period. Types of material include correspondence, Board of Directors meeting minutes, annual reports, membership and fundraising files, material from conferences and meetings, Senate and House testimonies and legislation, legal documents and court cases, contracts and educational materials, program descriptions and reports, publications, press coverage, medical research literature, pharmaceutical company research, photographs, audiovisual materials, and a small selection of artifacts and oversize posters. There are two boxes (0.6 linear ft) of materials that are restricted, as they house personal health information.
The records are arranged in eight series:
- I. ADMINISTRATION
- II. MEMBERSHIP AND FINANCIAL MATERIALS
- III. LEGISLATION AND LITIGATION
- IV. CONFERENCES AND MEETINGS
- V. OUTREACH
- VI. MEDICAL CORRESPONDENCE AND RESEARCH DATA [RESTRICTED]
- VII. DIETHYLSTILBESTROL SUBJECT FILES
- VIII. AUDIOVISUAL AND PHOTOGRAPHIC MEDIA
These records provide information on diethylstilbestrol, patient and consumer advocacy, and product liability litigation. They reflect DES Action USA's long history of focused activism as support and information providers. Records that explore the medical and social effects of DES exposure and its consequences (cancer, infertility, pregnancy complications, immune dysfunction, gender identity, the psychological effects of risk awareness) are of particular value. Documents related to pharmaceutical litigation are of interest because of the legal precedents for product liability that resulted. The medical and health education publications document changing awareness of women's and men's reproductive health issues, while the organization's sustained local and national coordination offers a model to activists in opposition to corporate interests. Publications include a complete run of their newsletter, Pat Cody's book, DES Voices: From Anger to Action (2006), and two community organizing handbooks (1980, 1985). Photographs document conferences and meetings, while slides and videotapes document health education work and public outreach.
Dates of Materials
- Majority of material found within 1975-2014
- DES Action National (Organization) (Organization)
Language of Materials
Conditions Governing Access
This collection is open for research use with the following restrictions on access: At the direction of the donor, researchers are required to sign an access agreement agreeing not to identify individuals named in letters or emails written to DES Action USA. Please consult with special collections staff at firstname.lastname@example.org to begin this process; Series VII. MEDICAL CORRESPONDENCE AND RESEARCH DATA is closed until 2037.
Conditions Governing Use
Copyright for the newsletter, DES Action VOICE, and organization's website are retained by DES Action USA. The Sophia Smith Collection owns copyright to all remaining materials created by DES Action USA. Permission must be obtained to publish reproductions or quotations beyond "fair use."
Copyright to materials authored by others may be owned by those individuals or their heirs or assigns. It is the responsibility of the researcher to identify and satisfy the holders of all copyrights.
Biographical / Historical
DES Action USA is a national consumer advocacy group, whose mission is to educate and raise awareness about diethylstilbestrol (DES) in the public and medical and legal professions, support the DES-exposed population, and advocate for consumer vigilance and rights. DES is a synthetic estrogen, which was, from about 1940, prescribed to women at risk of miscarriage and, later, to promote healthy babies. Medical research has now shown that DES has adverse effects and that the approximately 10 million DES-exposed people are at risk for cancer, infertility, pregnancy complications, and other health problems.
The drug came onto the United States market in 1940 from several manufacturers, as the drug was both unpatented and cheap to produce. Despite research demonstrating possible carcinogenic effects (documented in the 1930s) and its inefficacy for preventing miscarriage in 1953, pharmaceutical companies publicized earlier and more favorable studies in their marketing and promotion. In 1971, medical researchers identified several clusters of rare vaginal cancers in some of the children exposed to DES in utero, now teenagers and young adults. The news was alarming to many of the women who had taken the drug during their pregnancies. As the women's health movement was developing during the same years, concerned women around the country used the model of local organizing and outreach to find other DES-exposed women and their children (known as DES mothers, sons, and daughters).
One of the earliest gatherings was of the DES Information Group, founded by Pat Cody (1923-2010) in 1974, working with the Berkeley Free Clinic in California. Cody's group soon joined with the DES Action Committee of the San Francisco-based Committee for the Medical Rights of Women, and the two groups merged into a Bay-area organization. Similar grassroots organizations were being started in Connecticut, Illinois, Massachusetts, New Jersey, New York, and Pennsylvania. DES Action National (later renamed DES Action USA) formed in 1977 with a meeting of these grassroots groups. The organization incorporated as a non-profit in 1979.
Much of DES Action USA's early work was at local and state levels. Public health grants and legislative efforts supported educational outreach and medical care in California and New York. DES Action USA also successfully lobbied that a Federal Task Force be established. During the 1980s, work at state and national levels resulted in several official National DES Awareness Weeks (1983-1985), continued educational work and outreach efforts, and support for liability litigation cases against manufacturers.
Aware of the need for national funding for DES research and education, director Nora Cody (daughter of Pat Cody) worked closely with Representative Louise M. Slaughter (D-NY) to draft and support a research bill during the early 1990s. The bill was signed into law in 1992, with a second bill passed in 1998 to support research on the third generation of DES-affected people (the grandchildren of DES mothers). Through the early 2000s, their most high-profile work involved working with the Centers for Disease Control to develop and distribute consumer and health professional medical education materials to communicate the latest research about continuing effects of DES exposure.
The consequences of DES are now seen as a warning of the potential effects of environmental endocrine contamination. The drug was also used as a growth promoter in meat animals, and, though FDA approval for its use in animal feed was revoked in 1979, DES was found in exported American beef as recently as 2000. Other estrogenic compounds like bisphenol A are structurally similar to DES and may have similar effects.
In 2014, DES Action USA, facing the aging of its leadership, chose to merge with another medical nonprofit, the MedShadow Foundation, which does similar educational and outreach work but focuses on the risks and long-term adverse effects of many prescription drugs. The decision allowed the DES Action USA Board to step down from administration, while allowing DES Action USA to continue its work and mission.
9.959 linear feet (24 containers)
DES Action USA is a national consumer advocacy group, whose mission is to educate and raise awareness about diethylstilbestrol (DES), an oral synthetic estrogen drug; and support and advocate for the DES-exposed population. The DES Action USA records are primarily comprised of materials documenting the activities, programs, and projects of the organization.
Immediate Source of Acquisition
DES Action USA donated their records to the Sophia Smith Collection in 2015.
Periodic additions to this collection are expected and may not be reflected in this record.
Select news clippings have been separated from the collection, as they are readily available via Neilson Library, Interlibrary Loan, or originating news sites. For a list of these separated clippings, please contact Special Collections for a copy.
Processed by Jennifer Bolmarcich, 2016.
- Computer media
- Court cases
- DES Action USA
- DES-exposed daughters
- DES-exposed persons
- Diethylstilbestrol -- Law and legislation -- United States
- Diethylstilbestrol -- Side effects
- Feminism -- Health aspects
- Forms (documents)
- Grant proposals
- Health care reform
- Health education of women -- United States
- Intersex people -- United States
- Legislative documents
- Organization files
- Prenatal care -- United States
- Products liability -- Drugs -- United States
- Public health -- United States
- Reproductive and sexual health
- Sound recordings
- Transgender people -- United States
- Women -- Health and hygiene
- Women's health services
- letters (correspondence)
- press releases
- DES Action USA records
- Finding Aid
- Finding aid prepared by Jennifer Bolmarcich.
- Description rules
- Describing Archives: A Content Standard
- Language of description
- Script of description
- 07/26/2017: This resource was modified by the ArchivesSpace Preprocessor developed by the Harvard Library (https://github.com/harvard-library/archivesspace-preprocessor)
- 2017-07-26T17:48:23-04:00: This record was migrated from InMagic DB Textworks to ArchivesSpace.
- 2022-03-03: Integrated description of oversized materials
Part of the Sophia Smith Collection of Women's History Repository
7 Neilson Drive
Northampton MA 01063