I
105TH CONGRESS
1ST SESSION
H. R. 1788
To amend the Public Health Service Act to ensure adequate research and
education regarding the drug DES.
IN THE HOUSE OF REPRESENTATIVES
JUNE 4, 1997
Ms. SLAUGHTER (for herself, Mrs. MINK of Hawaii, Ms. CHRISTIAN-GREEN,
Mr. LAFALCE, Mr. KANJORSKI, Mrs. MALONEY of New York, Mrs.
MORELLA, Mr. NADLER, Ms. NORTON, Ms. PELOSI, Mr. STARK, Mr.
TOWNS, Ms. WATERS, Mr. WAXMAN, and Ms. WOOLSEY) introduced the
following bill; which was referred to the Committee on Commerce
A BILL
To amend the Public Health Service Act to ensure adequate
research and education regarding the drug DES.
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ‘‘DES Education and
Research Amendments of 1997’’.
SEC. 2. FINDINGS.
With respect to diethylstilbestrol (a drug commonly
known as DES), the Congress finds as follows:
(1) DES was widely prescribed to American
women from 1938 to 1971 in the mistaken belief it
would prevent miscarriage. Approximately 5,000,000
pregnant women took the drug, resulting in DES ex-
posure for approximately 5,000,000 daughters and
sons.
(2) Studies conducted since the 1970s have
shown that DES damages the reproductive systems
of those exposed in utero and increases the risk for
cancer, infertility, and a wide range of other serious
reproductive tract disorders. These disorders include
a five-fold increased risk for ectopic pregnancy for
DES daughters and a three-fold increase in risk for
miscarriage and preterm labor. Studies have indi-
cated that exposure to DES may increase the risk
for autoimmune disorders and diseases.
(3) An estimated 1 in 1,000 women exposed to
DES in utero will develop clear cell cancer of the va-
gina or cervix. While survival rates for clear cell can-
cer are over 80 percent when it is detected early,
there is still no effective treatment for recurrences of
this cancer.
(4) Studies also indicate a higher incidence of
breast cancer among mothers who took DES during
pregnancy.
(5) While research on DES and its effects has
produced important advances to date, much more re-
mains to be learned.
(6) Two of the most pressing research concerns
at present are whether estrogen replacement therapy
is advisable for DES-exposed women and whether
DES may have a genetic impact on the third genera-
tion—the children of parents exposed to DES in
utero.
(7) All DES-exposed individuals have special
screening and health care needs, especially during
annual gynecological examinations and pregnancy
for DES daughters, who should receive high risk
care.
(8) Many Americans remain unaware of their
DES exposure or ignorant about proper health care
and screening. There remains a great need for a na-
tional education effort to inform both the public and
health care providers about the health effects and
proper health care practices for DES-exposed indi-
viduals.
SEC. 3. REVISION AND EXTENSION OF PROGRAM FOR RE-
SEARCH AND AUTHORIZATION OF NEW NA-
TIONAL PROGRAM OF EDUCATION REGARD-
ING DRUG DES.
(a) PERMANENT EXTENSION
OF GENERAL PRO-
GRAM.—Section 403A(e) of the Public Health Service Act
(42 U.S.C. 283a(e)) is amended by striking ‘‘for each of
the fiscal years 1993 through 1996’’ and inserting ‘‘for
fiscal year 1997 and each subsequent fiscal year’’.
(b) NATIONAL
PROGRAM
FOR
EDUCATION
OF
HEALTH PROFESSIONALS AND PUBLIC.—From amounts
appropriated for carrying out section 403A of the Public
Health Service Act, the Secretary of Health and Human
Services, acting through the heads of the appropriate
agencies of the Public Health Service, shall carry out a
national program for the education of health professionals
and the public with respect to the drug diethylstilbestrol
(commonly know as DES). To the extent appropriate,
such national program shall use methodologies developed
through the education demonstration program carried out
under such section 403A. In developing and carrying out
the national program, the Secretary shall consult closely
with representatives of nonprofit private entities that rep-
resent individuals who have been exposed to DES and that
have expertise in community-based information campaigns
for the public and for health care providers. The imple-