The National DES Education Project
National Cancer Institute
National Institute of Child Health and Human Development
National Institutes of Health
An estimated 4.8 million pregnant women were exposed to DES (diethyl-stilbestrol),
a drug given to prevent miscarriage and other pregnancy problems from 1938-1971.
In 1971, the FDA directed doctors not to prescribe DES to pregnant women
after it was linked to a rare vaginal cancer in DES daughters.
Since that time, DES has been linked to additional health problems including
pregnancy problems in daughters, genital problems in sons, and a slightly
increased risk for breast cancer in the women who took it. Fortunately,
there are special screening procedures that can increase the early detection
of DES-related health problems and thereby reduce the impact of DES exposure.
Congress passed legislation in 1992 mandating a national DES research and
education program. In response, the National Cancer Institute designed The
National DES Education Program. This special initiative carries out the
congressional mandate for expanded public and provider education to reduce
the impact of DES on health. The National DES Education Program is the first
to addrcss the full range of health problems related to DES, and the first
attempt to reach both a broad public audience and all relevant health care
providers.
Dr. Sherry Mills, Project Director of the National DES Education Program,
described the goals ol the three year program: "The objective of the
National DES Education Program is to design, implement and evaluate a program
to increase health information about DES exposure and to improve the early
detection, diagnosis and treatment of medical conditions associated with
DES exposure. The program is targeted for primary care physicians, oncologists,
urologists, obstetricians/gynecologists, as well as the DES-exposed population.
This is the first major educational effort launched in the United States
for this important high-risk population.''
The National Cancer Institute launched the National DES Education Program
in September of 1993 with awards to five regional sites:
Baylor College of Medicine, Houston, Texas
Raymond H. Kaufman, M.D., Principal Investigator
Califorrlia Public Health Foundation, Berkeley, California
Barbara A. Cohn, Ph.D, Principal Investigator
Education Development Center, Inc., Newton, Massachusetts
Lydia O'Donnell, Ed.D., Principal Investigator
New England Research Institutes, Watertown, Massachusetts
Nancy Avis, Ph.D., Principal Investigator
University of Wisconsinp;Madison, Madison, Wisconsin
Marion R. Brown, Ph.D., Principal Investigator
Each of the five projects consists of a collaboration between public health
experts, health care providers, and consumer leadership including DES Action,
the DES Cancer Network, and the DES Sons Network. The five sites are designing,
implementing, and evaluating innovative DES education campaigns.
For more information about DES, call the DES hotline closest to you,
on of the DES consumer organizations, or the National Cancer Institute.
DES Hotlines
The Southwest DES Center
Baylor College of Medicine
1(800) DES-NEWS (1-800-337-6397)
(Texas and Louisiana only)
California Public Health Foundation
1(800) DES-NEWS (1-800-337-6397)
(Greater San Francisco Bay Area only: area codes 408, 415, 510, and 707)
Education Development Center, Inc.
1(800) DES-NEWS (1-800-337-6397)
(Massachusetts only)
New England Research Institutes
Long Island Jewish Medical Center
1(800) DES-NEWS (1-800-337-6397)
(Nassau and Suffolk Counties, New York City, New York only)
University of Wisconsin
1(800) DES-NEWS (1-800-337-6397)
(Illinois, Iowa, Minnesota, Nebraska, Wisconsin only)
