Five College Archives and Manuscript
                        Collections
Home >> Sophia Smith Collection >> DES Action USA records, 1939-2016 (bulk 1975-2014)
Smith College seal
DES Action USA records, 1939-2016 (Bulk: 1975-2014)
24 boxes (9.75 linear ft.)
Collection number: 739

Abstract:
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.

Terms of Access and Use:

Restrictions on access:

The Records are open to research according to the regulations of the Sophia Smith Collection with the following exceptions:

  • Researchers are required to sign a Records Access Agreement agreeing not to identify individuals named in letters or emails written to DES Action USA.
  • Series VII. MEDICAL CORRESPONDENCE AND RESEARCH DATA is closed until 2037.
  • Access to audiovisual materials requires the production of access copies.

Restrictions on 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.

Sophia Smith Collection
Smith College
Northampton, MA

Historical Note

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.

Scope and Contents of the Collection

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 nine 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
  • IX. OVERSIZE MATERIALS

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.


Information on Use
Terms of Access and Use
Restrictions on access:

The Records are open to research according to the regulations of the Sophia Smith Collection with the following exceptions:

  • Researchers are required to sign a Records Access Agreement agreeing not to identify individuals named in letters or emails written to DES Action USA.
  • Series VII. MEDICAL CORRESPONDENCE AND RESEARCH DATA is closed until 2037.
  • Access to audiovisual materials requires the production of access copies.

Restrictions on 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.

Preferred Citation

Please use the following format when citing materials from this collection:

DES Action USA records, Sophia Smith Collection, Smith College, Northampton, Mass.

History of the Collection

DES Action USA donated their records to the Sophia Smith Collection in 2015.

Accruals:

Periodic additions to this collection are expected and may not be reflected in this record.

Processing Information

Processed by Jennifer Bolmarcich, 2016.


Additional Information
Contact Information
Smith College Special Collections
Young Library
4 Tyler Drive
Northampton, MA 01063

Phone: (413) 585-2970
Fax: (413) 585-2886

Email: specialcollections@smith.edu
URL: https://www.smith.edu/libraries/special-collections
Language
English
Separated Material

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.


Series Descriptions
(1974-2014)
1.33 linear ft.

This series concerns the founding, early planning, and history of DES Action USA. It is arranged chronologically within several subseries and sub-subseries. It contains early planning documents, correspondence, meeting minutes, reports, governance documents, local and regional affiliate records, and biographical material about the leadership.

The first subseries, History, contains records of the early years of DES Action when it was part of the Committee for the Medical Rights of Women. Also included are several organizational histories and timelines.

The second subseries, Board of Directors, contains meeting minutes and reports from various committees and projects, correspondence, manuals, and profiles of Kari Christianson, Pat Cody, Nora Cody, and Fran Howell, all founders or long-term leaders of the organization. Materials are arranged chronologically, save for the biographical files, which are alphabetical by name. The discussions reveal tensions about support for litigation, the independence of affiliates, and the challenges of maintaining vision and activism over decades. The minutes also show the changing needs of members over time, as cancer fears shifted to other concerns like infertility, pregnancy complications, and other medical and personal issues.

The folder, "Minutes and reports, 2001-02," contains a significant discussion of reports and potential research concerning DES effects on gender identity and sexual orientation among DES Daughters and Sons in the 2001-2002 Board meeting minutes. The discussion includes email conversations with the DES Sons Network, an informal group led by Michael Freilick, a DES Action Board member, about inadequate representation and attention to DES-exposed men's issues, including hypogonadism, infertility, testicular cancer, intersex and transgender identity.

The Organization subseries documents the organization's incorporation as a non-profit, and is comprised of by-laws, amendments, and other governance documents. The subseries also documents the working relationship between regional affiliates and the national Board. The annual reports summarize projects and activities that are more extensively documented in SERIES III. LEGISLATION AND LITIGATION, SERIES IV. CONFERENCES AND MEETINGS, and SERIES V. OUTREACH.

(1979-2014)
0.5 linear ft.

This series is divided into two subseries, Membership and Fundraising. Material is arranged chronologically. Within Membership, there is correspondence from members in response to renewal requests or articles in the DES Action Voice newsletter (See SERIES V. OUTREACH, subseries Public for newsletter issues). The letters primarily date from 2006-2014. In addition, there are sample membership renewal letters dating from 1995-2005, which reflect the type of requests sent to members.

The Fundraising subseries documents the wide range of sources DES Action USA has relied on for funding over the years. Member support was central to sustaining the organization, as reflected in the folders of special appeal mailings. A number of these letters had attached sticky notes recording the number of letters sent for different campaigns; these numbers have been transcribed onto the documents.

Two folders contain material about the support of actor Jean Kasem, a DES daughter and wife of radio personality Casey Kasem. She was involved with DES Action USA from 1990-1992, and recorded a series of public service announcements for television for the organization. Photographs of Jean, Casey, and their daughter Liberty Kasem, along with video recordings of the announcements are located in SERIES VIII. PHOTOGRAPHS AND AUDIOVISUAL MATERIALS.

This series is also comprised of a selection of grant proposals and documentation of grant funding from several family foundations. See SERIES V. OUTREACH, subseries Health Education Contracts, for the records of government-funded grants at the state and federal levels.

(1978-2010)
0.65 linear ft.

Included in this series are materials related to the DES Action USA legislative and litigation efforts. Materials are arranged chronologically within each subseries.

The Federal Legislation subseries contains material on a number of national legislative efforts, such as securing funding and product liability reform. During the 1980s, there were three annual "National DES Awareness Weeks" officially proclaimed by Congress and President Reagan. When Nora Cody became executive director in 1990, she began working with members of the House of Representatives and the Senate to secure funding for research on the long-term effects of DES exposure. A partnership between Representative Louise M. Slaughter (D-NY), a DES daughter, and DES Action USA led to designated funding for DES research in 1992. Correspondence and documentation related to this legislative efforts are documented in this series. Other legislative activism documents a continued fight against weakening product liability law. DES Action USA fought against bills like the 1995 "Product Liability Fairness Act," which would have eliminated manufacturer liability for any FDA-approved product. Similar efforts are seen in the subseries State Legislation. (Both California and New York passed DES-related funding laws circa 1980-1982.)

DES cases have created legal precedents concerning product liability and medical ethics. The Litigation subseries pertains to educational materials about litigation produced by DES Action USA, articles, correspondence, and court records relating to DES cases in the courts. The subseries also has information about the organization referring members and inquirers to several lawyers who developed expertise on the issues. Several folders concern Washington, D.C. lawyer Aaron Levine, who built his practice around medical liability and women's health issues, including a number of DES cases. There are also files about lawyer Sybil Shainwald, who also litigated DES cases.

(1979-2001)
0.25 linear ft.

This series contains records of annual meetings for members and external conferences attended, supported, or convened by DES Action USA. Material is arranged chronologically. The material about annual meetings includes ephemera, such as agendas and information packs, provided to participants, as well as conference proceedings and transcripts of lectures and presentations. There are meeting-related photographs in SERIES VIII. PHOTOGRAPHS AND AUDIOVISUAL MATERIALS.

The first scientific meeting that DES Action USA participated in was 1979. "Estrogens and the Environment" was hosted by the National Institute for Environmental Health Sciences in North Caroline, and Pat Cody was invited to give a poster presentation. She met several researchers at that meeting who would continue working closely with DES Action USA for the next several decades. There is a folder containing the conference agenda and summaries of the presentations given. Other external conferences included the 1985 United Nations Conference on Women's Health, held in Kenya. Pat Cody attended and gave a talk about DES, and there are samples of multilingual brochures about DES produced for the conference.

DES Action USA also sponsored several research conferences, and there are agendas, proceedings, and planning documents for both the DES Research Update 1999: Current Knowledge, Future Directions conference and the 2001 DES Action International Colloquium: Discovery, Education, Science. Like the annual meetings, there are photographs in SERIES VIII. PHOTOGRAPHS AND AUDIOVISUAL MATERIALS.

(1957-2016)
2.3 linear feet

The majority of DES Action USA's work is documented in this series. It has been arranged into subseries; each subseries has been arranged into sub-subseries by contract, project, or type of material. The three subseries, Health Education Contracts, Public, and Medical Professionals, contain records about and samples of work produced by DES Action USA in their outreach work. Health Education Contracts covers the major government-funded work performed by the organization. Their first contract in 1979 was awarded during their transition from being part of the Committee for the Medical Rights of Women to an independent organization. The contract was through the Northern California Cancer Program, and was funded by the National Cancer Institute. The educational project secured enough funding to allow Pat Cody and Nancy Adess to become paid staff working full-time on DES issues instead of being informal volunteers. The files contain a copy of the original contract, educational program drafts and flyers, and scripts for the "Ask Your Mother: Finding the DES-Exposed" slide-tape program. The slides and the audio recording are located in SERIES VIII. PHOTOGRAPHS AND AUDIOVISUAL MATERIALS. The presentation was given to Bay-area family planning clinics, and shared with other health organizations.

Included in the materials are samples of the educational literature produced by DES Action USA, including a 1980 handbook, Community Organizing for Health, which presented DES Action as a model for other community health groups. The women's health centers opening across the country during the 1970s proved to be critical to their educational work, as they provided a ready network for sharing literature and information about DES exposure with their communities. The organization's first health education contract led to a more substantial agreement funded by the state of California. This contract was a continuation of the work begun in 1978 and took effect in 1982. The "Ask Your Mother" slideshow was expanded into fuller training workshops for health professionals, educational literature included the creation of new brochures, posters, and a telephone information line. Several of these posters are included in SERIES IX. OVERSIZE. There is a small folder about the second National Cancer Institute pilot project in 1995 in Massachusetts that focused on continuing medical education for health care providers.

Finally, there are nine folders of material about DES Action USA's most substantial contract: a contract with the Centers for Disease Control (CDC). Working with Senator Tom Harkin (D-IA) and again with Rep. Slaughter (D-NY), funding was secured in 1998 for further public education about continued effects of DES. DES Action USA received funding for an education campaign targeted to both health professionals and the general public. The campaign happened throughout 2003. The project records include a planning research report; a handbook for affiliate groups to support local outreach; professional and lay educational literature; notes and agendas for a series of teleconference calls hosted by CDC researchers; and the CDC DES Update information book. In SERIES VIII. PHOTOGRAPHS AND AUDIOVISUAL MATERIALS, there are two computer CD-ROMs containing a continual medical education program produced out by DES Action USA as part of the campaign.

The Public subseries is the largest of the three subseries. It covers media campaigns, press coverage, educational literature, DES Action USA publications, and writing by DES Action USA members. The first two sub-subseries document media campaigns, press releases, and subsequent press coverage. For long-term preservation, photocopies of newspaper clippings have been made for articles unavailable in other formats, while articles available through Neilson Library or the Five Colleges library system are noted in a bibliography (Appendix 1). There is one article on oversize paper that is located in the flat file.

The media campaigns sub-subseries covers both political actions, as well as educational efforts. Documents include correspondence, flyers, posters, press releases, and background packets about the organization and DES. Four folders contain material from individual campaigns from 1979-1984 and 2004 (arranged chronologically), and two folders hold press releases from 1990-2000. Additional posters and objects can be found in SERIES IX. OVERSIZE.

Press coverage of DES Action USA includes member profiles in local or regional papers, coverage of litigation and legislation, and general publicity about DES, including coverage resulting from media campaigns or occasions like the National DES Awareness Weeks. Articles are from newspapers, magazines, and newsletters, and are arranged chronologically. Items of note include early coverage of the cancer link discovery, articles in national women's magazines like Redbook, and newspaper op-ed pieces by Representative Louise Slaughter and author Anna Quindlen. More information about political and court efforts can be found in SERIES III. LEGISLATION AND LITIGATION.

The educational literature sub-subseries contains educational packets sent to inquirers, graphics and associated reproduction licenses for cartoons and DES advertisements, DES Action USA-produced ephemera-dating from their first pamphlet (which pre-dates the national organization) through the mid-1990s, and similar ephemera published by government agencies and other community health organizations.

A complete run (1978-2014) of the DES Action USA newsletter, DES Action Voice, is included, followed by two issues from 2016 (after the transition to new administration). There is also a sample production folder for an issue from 2009, containing story ideas, correspondence, and editing files, which documents their usual process for creating issues. One unique aspect of their newsletter is their commitment to explaining medical research findings to their public audience. In 2009, Pat Cody created a handwritten index to the medical literature covered in the DES Action Voice over the years, which is included in these files. The newsletter documents the activities of the organization both regionally and nationally, and includes letters from members about issues of concern or in response to previous articles.

The remainder of the Public subseries contains writing by members of DES Action USA. There were two books published. One is a photo-essay by Margaret Lee Braun that developed from a traveling exhibit that was hosted at Smith College in 1993, among other locations. The book, DES Stories, was published in 2001, and a galley copy of the manuscript, in addition to other publication correspondence and publicity flyers, is included. The second book, DES Voices: From Anger to Action, is Pat Cody's history of DES and the organization's work over the years. These files include five folders of background research materials, which have been left in Cody's original order, a draft of the manuscript, publication files, flyers, and a copy of the published book.

The lived experience of DES Action USA members and their families is documented within the folders of essays and correspondence that close the Writing sub-subseries. There are pieces by Martha and Pat Cody; Patricia Sipes, a professor at Smith College; author Anna Quindlen; and novelist Laurie Halse Anderson, from the years before her fiction career. Finally, there is a folder of anonymized requests for information from members and from the public. Some of these letters were excerpted in Cody's book, while others were printed in the DES Action Voice. These essays and correspondence record an array of health effects and psychological stress experienced by three generations of DES families.

Women who took DES during pregnancy have felt guilt and fear for their children, in addition to anxiety about possible health effects for themselves. Those exposed in utero have experienced a wide range of health effects: cancer and radical surgeries for treatment; reproductive system malformation, and subsequent infertility and pregnancy complications; and a myriad of rarer effects, including skeletal problems, immune disorders, sexual and gender identity questions. As DES Grandchildren have been born and grown, third generation effects have been reported as well. Some third-generation issues have been the results of premature birth, while other problems include reproductive system problems (except for cancer) among other concerns. See the Survey Research sub-subseries within the Medical Professionals subseries as well as issues of DES Action Voice in the Publications sub-subseries for other personal stories.

The last subseries in OUTREACH consists of material created for medical professionals. The lack of medical education about DES and the DES-exposed, and the subsequent neglect or outright disbelief from physicians about patient experiences has created persistent difficulties for accurate and appropriate medical care and guidance. In the face of absent outreach and education from the FDA or other medical organizations, DES Action USA has responded via the numerous educational efforts documented here.

This subseries includes two sub-subseries: Provider Education and Survey Research. Also included in this subseries is an album of medical and news articles documenting the history of diethylstilbestrol. Provider Education contains scripts for educational slide shows, informational booklets for clinicians on treatment guidelines for DES-exposed patients, and formal curricula designed for medical students. There is material created with government funding, including continuing medical education materials from the Centers for Disease Control DES Update public education contract in 2003. See the Health Education Contracts subseries for related materials for that contract and others. The slides that accompany the scripts are located in SERIES VIII. PHOTOGRAPHS AND AUDIOVISUAL MATERIALS. There are also photographic prints of some of the slides. The last sub-subseries, Survey Research, contain draft surveys, correspondence, and result summaries for two health surveys conducted among members-a 2003 third-generation health effects questionnaire and a health history survey for DES Children. Raw questionnaire replies are part of the restricted SERIES VIII. MEDICAL CORRESPONDENCE AND RESEARCH DATA.

(1939-2006)
0.63 linear ft.

The DIETHYLSTILBESTROL SUBJECT FILES series contains diethylstilbestrol-related material created by organizations other than DES Action USA. Material types include advertisements, correspondence, medical literature, press releases, and comment submissions in response to FDA requests. Each subseries is arranged chronologically. The Consumer Health subseries contains campaign material by Public Citizen, a Washington, D.C. public advocacy group, concerning the use of diethylstilbestrol as an emergency contraceptive. This use of DES is one DES Action USA chose not to focus on, given the larger problem of in utero exposure, but it adds context to other controversies surrounding the drug. The subseries Medical Research contains two substantial bibliographies of research literature about DES, as well as a selection of journal articles and other medical literature, like prescription information sheets.

The Pharmaceutical Companies subseries was primarily arranged by board members. Focusing largely on Eli Lilly, the principal manufacturer of diethylstilbestrol, this subseries contains advertisements, correspondence, press releases, and news articles about Lilly and drug company misbehavior. Several folders document a protest action arranged in response to Eli Lilly's sponsorship of the "Achievement Awards in Women's Health" to be given to several members of Congress and researchers. Despite short notice, a national letter-writing campaign began, and DES Action USA was able to persuade three members of Congress, Rep. Pat Schroeder (D-CO), Rep. Olympia Snowe (R-ME), and Rep. Henry Waxman (D-CA) to decline the awards. At the awards ceremony, DES Action USA members held a protest, which garnered press coverage.

The last subseries, Federal Government, consists of government documents: Congressional hearings testimony, Food and Drug Administration rulings, and National Institutes of Health study proposals and records. The subseries is arranged by agency or part of Congress; it is then arranged chronologically within each section. The Food and Drug Administration sub-subseries material addresses the use of DES in animal feed, advisory notices sent to physicians, and other documents about DES regulation during the 1970s. The National Institutes of Health sub-subseries covers the DES Task Force reports --convened in 1979, and again in 1985--, the National Cancer Institute's long-term study named Diethylstilbestrol Adenosis (DESAD), and subsequent investigations. There are also Congressional hearings from both the House and the Senate concerning DES and its regulation in this subseries.

(1979-2013)
0.63 linear feet

Restrictions on access:

In accordance with professional guidelines, the contents of this series have been restricted for twenty years and will be available to researchers in 2037. The material will then be subject to the same access agreement as the rest of the collection.

This series contains information requests and medical problem reports from DES Action USA members and from the general public. The correspondence contains both personal identifying information, as well as personal health information for letter writers, as well as minor children and grandchildren. In addition, the series contains similar sensitive content in response to the third-generation health questionnaire found at the end of SERIES V. OUTREACH.

(1977-2011)
2.5 linear ft.

This series is comprised of photographs and other audiovisual material, documenting the work and activities of DES Action USA. Materials include photograph albums, educational slides, public service announcements, as well as other material types. The subseries Photographs contains several photograph and scrapbook albums. Albums contain photographs and clippings of occasions such as board meetings, annual meetings, and local and regional activities of DES Action USA affiliates during the National DES Awareness Week in 1983. The late 1980s and 1990s are recorded in loose color photographs, arranged by event and date. There are also assorted media campaign photographs of flyers and DES-related images, as well as a set of publicity photographs of Jean Kasem. More about Kasem's work with DES Action USA can be found in SERIES II. MEMBERSHIP AND FINANCIAL MATERIALS.

There are several sets of 35mm slides that are the counterparts to the scripts found in SERIES V. OUTREACH within the Medical Professionals subseries. The cassette that accompanies the 1980 "Ask Your Mother" talk is found in the following Audiotapes subseries. There are two other cassettes, a second slide show recording, and the series of public service announcements that actor Linda Kelsey recorded in 1982.

The next subseries, CD-ROMs, contains the continuing medical education programs developed with the Centers for Disease Control and distributed by DES Action USA in 2003. There are also two CDs: one holds a copy of Pat Cody's original manuscript for her history of DES Action USA, and the second holds scans of Eli Lilly advertisements from 1957.

The Videotapes subseries include public service announcements, news interviews, two films about DES (A Healthy Baby Girl and The Bitter Taste of a Miracle Drug), and two medical lecture recordings.

(1984-2007)
1 linear ft.

This series of oversize materials contains both artifacts and analog materials. There is a set of "Ask Your Mother" keychains from circa 1983 and a "Bad Karma for Big Pharma" t-shirt from 2007. The posters are from different outreach and awareness campaigns, and most are undated. In addition, there is one news article on oversize paper, from the 2003 Centers for Disease Control DES update campaign. See SERIES V. OUTREACH for more material on media campaigns, educational materials, and press coverage.

Contents List
SERIES I. ADMINISTRATION



History



Coalition for the Medical Rights of Women,
1974-1978

Box 1: folder 1-3
DES Action organizational history and timelines,undated
1978-1995,

Box 1: folder 4
Board of Directors



Internal correspondence,undated
1999-2001,

Box 1: folder 5
Meetings



Minutes and reports,
1977-1990

Box 1: folder 6-12
Minutes and reports,
1991-2014

Box 2: folder 1-12
Policies



Manual,
1998, 2000

Box 2: folder 13-14
Ephemera from Manual binder,
1993-2005

Box 2: folder 15
Meeting notes from Manual binder,
1990-2003

Box 3: folder 1
Leadership



Christianson, Kari,undated
2005, 2010,

Box 3: folder 2
Cody, Nora,undated
2001,

Box 3: folder 3
Cody, Pat,undated
1979-2010,

Box 3: folder 4
Howell, Fran, undated


Box 3: folder 5
Organization



Articles of Incorporation,
1979

Box 3: folder 6
Bylaws,
1980-1999

Box 3: folder 7-10
Internal Revenue Service tax-exemption ruling,
1980

Box 3: folder 11
Affiliate Groups



Bay Area (CA),
1982-1983

Box 3: folder 12
Michigan,undated
1980,

Box 3: folder 13
Washington, D.C.,
1977

Box 3: folder 14
Policy and Procedures Handbook for affiliate groups,
circa 1984

Box 3: folder 15
DES Action Affiliate Manual,
1997

Box 3: folder 16
Annual reports



1977-2001

Box 3: folder 17-23
SERIES II. MEMBERSHIP AND FINANCIAL MATERIALS



Membership



Correspondence,
1988, 2006-2014

Box 4: folder 5-6
Renewal letters,
1996-2005

Box 4: folder 7-8
Fundraising



Special appeals



Letters,
1979-1996

Box 4: folder 9-13
Letters,
1997-2014

Box 5: folder 1-4
Ideas,undated
1990-1993, 2006,

Box 5: folder 5
30th anniversary events,
2008

Box 5: folder 6
Celebrity support



Kasem, Jean : correspondenceundated
1990-1992,

Box 5: folder 7
Kasem, Jean : ephemera,undated
1991-1992,

Box 5: folder 8
Grants



Foundation grants,undated
1990, 2013,

Box 5: folder 9
Proposal to March of Dimes,
1985

Box 5: folder 10
DES Action USA profile for funders, undated


Box 5: folder 11
SERIES III. LEGISLATION AND LITIGATION



Federal legislation



National DES Awareness Week,[See also scrapbook, VIII]
1985

Box 5: folder 12
Slaughter, Louise M.



DES Education and Research Amendments of 1992 (H.R. 4178),undated
1990-1994,

Box 5: folder 13-16
DES Education and Research Amendments of
1992, 1992 October-December

Box 6: folder 1-2
Senate counterpart bills S. 208 and S. 2837,
1991-1992

Box 6: folder 3
Women's Health Office Act of 1995 (H.R.1736),
May 8, 1995

Box 6: folder 4
Product Liability Fairness Act of(H.R.956), 1996
1995

Box 6: folder 5
Women's Health Research and Prevention Amendments of
1998, 1997-1998

Box 6: folder 6
Lobbying



Guide,
1998-1999

Box 6: folder 7
Visits,
1998-1999

Box 6: folder 8
State legislation



Alaska,
1996 May 22-28

Box 6: folder 9
California,[See also NCCP 1980-84)
1980-1982

Box 6: folder 10
New York,
1980, 1986

Box 6: folder 11
Litigation



Mink v. University of Chicago,
1978

Box 6: folder 12
Bichler v. Eli Lilly and Co.,
1979

Box 6: folder 13
DES Action USA Litigation Information Sheet, undated


Box 6: folder 14
Levine, Aaron



Correspondence and press coverage,
1984, 2001-2007

Box 6: folder 15
Case rulings and correspondence,
2005-2010

Box 6: folder 16-19
Amicus curiae brief in Wyeth v. Levine,
2008

Box 6: folder 20
London, Michael,
circa 2008

Box 7: folder 1
Shainwald, Sybil,
2005-2010

Box 7: folder 2
SERIES IV. CONFERENCES AND MEETINGS



DES Action annual meetings [SEE ALSO SERIES IX. PHOTOGRAPHS]



Annual meeting ephemera, reports, and transcripts,
1988-1999

Box 7: folder 3-6
Research conferences



National Institute of Environmental and Health Sciences Symposium on Estrogens in the Environment,
1979

Box 7: folder 7
Meeting on DES-Related Research,
1983

Box 7: folder 8
United Nations Conference on Women's Health,
1985

Box 7: folder 9
National Institutes of Health Workshop: Long-term effects of exposure to diethylstilbestrol (DES),
1992

Box 7: folder 10
DES Research UpdateCurrent Knowledge, Future Directions, 1999
1999:

Box 7: folder 11
DES Action International Colloquium: Discovery, Education, Science



Colloquium planning,
2001

Box 7: folder 12
Colloquium materials,
2001

Box 7: folder 13
Colloquium transcripts,
2001

Box 7: folder 14
SERIES V. OUTREACH



Health education contracts



Northern California Cancer Project,
1978-1982


Committee for the Medical Rights of Women pilot contract,
1978-1982

Box 7: folder 15
DES Action contract for media campaign and outreach,
1982

Box 7: folder 16
Informational literature,
1978, 1982

Box 7: folder 17
Community organizing manuals,
1980

Box 7: folder 18-19
Informational literature,undated
1981,

Box 8: folder 1
California state contract,
1982-1983

Box 8: folder 2
California state campaign press kit,
1982

Box 8: folder 3
National Cancer Institute



Massachusetts,
1995

Box 8: folder 4
Centers for Disease Control DES Update Campaign



DES National Educational Campaign: findings from formative research report,
2000

Box 8: folder 5-6
Campaign planning and contract records,
2002

Box 8: folder 7
Correspondence with affiliate groups,
2002

Box 8: folder 8
DES Action USA Affiliate Tool Kit,
2002

Box 8: folder 9
Press releases and news articles,
2003-2004

Box 8: folder 10
CDC's DES Update Teleconference Series,
2003

Box 8: folder 11
CDC's DES Update book,
2003

Box 8: folder 12
CDC's DES Update educational literature,
2002-2003

Box 8: folder 13
Public



Media campaigns



DES Awareness,
1979

Box 8: folder 14
Defeat the Product Liability Act,
1982

Box 8: folder 15
Ask Your Mother,
1983

Box 8: folder 16
Talking to your mother about drugs (PA),
2004

Box 8: folder 17
Press releases,
1990-1994

Box 8: folder 18
Press coverage



Press releases,undated
1998, 2000,

Box 8: folder 19
Letters to the editor,
1983, 1994, 2009

Box 9: folder 1
Articles,
1971-2012

Box 9: folder 2-6
Educational literature



DES exposure questionnaires


Box 9: folder 7
Information packet for inquirers


Box 9: folder 8
Information sheets


Box 9: folder 9
Order forms


Box 9: folder 10
Publishing graphics,undated
1957-1984,

Box 9: folder 11
"Working together",
1985

Box 9: folder 12
Ephemera



Booklets,
1980-1983

Box 9: folder 13
Booklet,
1984

Box 9: folder 14
Booklet,
1993

Box 9: folder 15
Brochures,
1975-1977

Box 9: folder 16
Brochures,
1978-1980

Box 9: folder 17
Brochures,
1981-1984

Box 9: folder 18
Brochures,undated
1995,

Box 9: folder 19
Government publications



1976-1980

Box 10: folder 1
undated
1981-1986,

Box 10: folder 2
National Cancer Institute booklets,
1995

Box 10: folder 3
Related organizations' publications



Literature from other women's health organizations,undated
1976-1992, 1997,

Box 10: folder 4
Publications



DES Action Voice newsletter



Institutional subscriptions to DES Action Voice,
1999-2002

Box 10: folder 5
Issue 122 editorial materials,
2009

Box 10: folder 6
Medical literature index for DES Action Voice,
2009

Box 10: folder 7
Issues
1-97, 1978-2003

Box 10: folder 8-13
Issues 98-141, 148-
49, 2003-2014, 2016

Box 11: folder 1-3
Writing by DES Action USA members



DES Stories Project


Box 11
DES Stories correspondence and publicity,
2000-2001

Box 11: folder 4
DES Stories book,
2001

Box 11: folder 5
DES Voices book project



Background research materials,
1974-2005

Box 11: folder 6-10
DES Action USA book draft,
2007

Box 11: folder 11
Reprinting licenses,
2007-2008

Box 11: folder 12
Design and publication,
2008

Box 11: folder 13
DES Voices: From Anger to Action,
2008

Box 11: folder 14
Essays,undated
1975-2003,

Box 12: folder 1-3
Medical information requests-anonymized,undated
1982-2000,

Box 12: folder 4
Medical professionals



History of the D.E.S. Controversy: News Clippings
1945-1988, circa 1989

Box 12: folder 5
Provider education



Booklets,
1976-1986, 1995

Box 12: folder 6-7
DES Action slideshow script,[see also slides]
1984

Box 12: folder 8
Nurse education script,[see also slides]
1985

Box 12: folder 9
Physician education script,
1985

Box 12: folder 10
Epidemiology curriculum project,
1989-1990

Box 12: folder 11
Clinical reviews,
1990-2001

Box 12: folder 12
Curriculum module,
2001

Box 12: folder 13
Survey research



Third-generation survey development,
1999-2004

Box 12: folder 14
Health history survey questionnaire and results,
2012-2014

Box 12: folder 15
SERIES VI. DIETHYLSTILBESTROL SUBJECT FILES



Consumer health



Public Citizen reports,
1972-1985

Box 13: folder 1
Medical research



Bibliography by DES Action USA ,
circa 1980-2003

Box 13: folder 2
Bibliography by Aaron Levine,
1991

Box 13: folder 3
Diethylstilbestrol medication names,
1981-1990

Box 13: folder 4
Diethylstilbestrol prescribing information sheets,
1961, 1988, 1991

Box 13: folder 5
Medical quotations concerning estrogen use by DES daughters, undated


Box 13: folder 6
Research articles,
1939-81

Box 13: folder 7
Third-generation research,undated
1978-2006,

Box 13: folder 8
Pharmaceutical companies



Investigational drug Gestiva


Box 13: folder 9
DES advertisements,undated
1953, 1957,

Box 13: folder 10
Eli Lilly advertisements,
1945-1952, 2006

Box 13: folder 11
Eli Lilly's Dirty Tricks,undated
1985-2001,

Box 13: folder 12
Protest of Eli Lilly-sponsored Achievement Awards in Women's Health,
1996

Box 13: folder 13-15
Federal government



Department of Health, Education and Welfare



Food and Drug Administration



Diethylstilbestrol,
1973-1978

Box 13: folder 16
Physician advisory,
1977-1979

Box 13: folder 17
Withdrawal of approval for animal feed use,
1979

Box 13: folder 18
National Institutes of Health



National Cancer Institute diethylstilbestrol adenosis (DESAD) request for proposals,
1973

Box 13: folder 19
National Cancer Institute diethylstilbestrol adenosis (DESAD) study,
1976-1990, 2001

Box 14: folder 1
DES Task Force Summary Report,
1978 September 21

Box 14: folder 2
DES Task Force correspondence and reports,
1985

Box 14: folder 3
National Cancer Institute DES Follow-Up study,==United States Congress
1993-1999

Box 14: folder 4
House of Representatives



Regulation of Diethylstilbestrol (DES),
1972

Box 14: folder 5
Senate



Testimony from committee hearings,
1973, 1979

Box 14: folder 6
SERIES VII. MEDICAL INFORMATION AND RESEARCH DATA [RESTRICTED UNTIL 1 JAN
2037]


Correspondence



Medical concerns,
1979-2006

Box 15: folder 1-24
Medical concerns,undated
2007-2013,

Box 16: folder 1-6
Query and survey responses



Health problem reports,
2003

Box 16: folder 7
Mother and daughter stories,
1996

Box 16: folder 8
Third-generation cases,
1983-2005

Box 16: folder 9
Third-generation survey,
2003

Box 16: folder 10-12
Pathology reports,
2009

Box 16: folder 13
SERIES VIII. PHOTOGRAPHS AND AUDIOVISUAL MATERIALS



Photographs



Albums



First board meeting spoof album,
1978

Box 17: folder 1
National DES Awareness Week scrapbook,
1983

Box 17: folder 2-4
"DES Action 1979-" album,
1981-1987

Box 17: folder 5
Events



Annual meeting,
1981

Box 18: folder 1
Board meeting,
May 1988

Box 18: folder 2
Annual meeting,
October 1988

Box 18: folder 3-8
Annual meeting,
1989

Box 18: folder 9-10
Annual meeting,
1994

Box 19: folder 1-2
DES Research Update prints and negatives,
1999

Box 19: folder 3
DES Research Update digital prints on " floppy, 1999
31/4

Box 19: folder 4
DES Research Update prints,
1999

Box 19: folder 5
Photographs from media campaigns, undated


Box 19: folder 6
Kasem, Jean, undated


Box 19: folder 7
Slides



DES: The Wonder Drug slides and transparencies,
circa 1980

Box 20: folder 1
DES Action slideshow for health professionals,
1980

Box 20: folder 2
Ask Your Mother slideshow instructions,
1980

Box 20: folder 3
Ask Your Mother slideshow,
1980

Box 20: folder 4
Slide Set IV, DES daughter cervices, undated


Box 20: folder 5
Updated slides,
1988

Box 20: folder 6
Audiotapes [Access copies needed]



Kelsey, Linda -- DES Action PSAs,
1983 February 3

Box 21: folder 1
Your Mother--Finding the DES Exposed slideshow audio


Box 21: folder 2
DES Action - "Ask your Mother" - slide tape show for health workers [Master
1985]

Box 21: folder 3
Digital Media [Access copies needed]



CDC's DES Update: Educational Tools for Health Care Providers,CD
2003,

Box 21: folder 1-2
Pat's Book CD-R
July 2006,

Box 21: folder 3
DES advertisement scans, CD-R
1957

Box 21: folder 4
Videotapes [Access copies needed]



DES Action PSAs :10/:20/:30/:45/:60 U.S. Version


Box 21: folder 1
DES Action PSA American Version 30 sec,
1988 March 25

Box 21: folder 2-3
DES Action PSAs-3 by Linda Kelsey 1982, 5 by Jean Kasem sec)
(10,20,30,45 and 60

Box 21: folder 4
DES Good Morning Ameri
ca 1992 April 22

Box 22: folder 5
Representative Louise Slaughter [Tape 3 VR# 16) 40:
33, 1992 June 8

Box 22: folder 6
Representative Louise Slaughter [Tape 4 VR# 17) 40:
33, 1992 June 8

Box 22: folder 7
POV on DES A Healthy Baby Girl


Box 22: folder 8
Helfand A Healthy Baby Girl


Box 22: folder 9
Judith Helfand Productions: A Healthy Baby Girl (non-broadcast version)


Box 22: folder 10
The bitter taste of a miracle drug; St├ęphane Mercurio, Catherine Sinet, France,
2002

Box 22: folder 11
Marsha Vanderford CNN - Interview CDC-DES


Box 22: folder 12
KOLO-TV DES Story,
11 Mar 2003

Box 22: folder 13
KOLO-TV Reno DES Daughter Kim Mazares,
2003 March 20

Box 22: folder 14
DES Dr Janet Pregler Chapters
9 and 2, 2003 May

Box 22: folder 15
DES Dr Janet Pregler Chapter
7, 2003 May 28

Box 22: folder 16
SERIES IX. OVERSIZE



Artifact



"Ask Your Mother" campaign keychains,
circa 1983

Box 21
"Bad Karma for Big Pharma" t-shirt,
2007

Box 24
News article,
2003

Flat File drawer 68
Posters,undated
1979-1994,

Flat File drawer 68

Search Terms
The following terms represent persons, organizations, and topics documented in this collection. Use these headings to search for additional materials on this web site, in the Five College Library Catalog, or in other library catalogs and databases.

Subjects
  • DES-exposed daughters
  • DES-exposed persons
  • DES-exposed sons
  • Diethylstilbestrol--Law and legislation--United States
  • Diethylstilbestrol--Side effects
  • Feminism--Health aspects
  • Health care reform
  • Health education of women--United States
  • Intersex people--United States
  • Prenatal care--United States--History
  • Products liability--Drugs--United States
  • Public health--United States
  • Reproductive health--United States--History
  • Transgender people--United States
  • Women's health services--United States
  • Women--Health and hygiene--United States


Questions about this collection? Contact the archives
Home | Help | About | Search