[Congressional Record Volume 143, Number 30 (Tuesday, March 11, 1997)]
[Senate]
[Pages S2129-S2132]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. BOND (for himself, Mr. Lott, Mr. Hollings, Mr. Hutchinson, 
        Mr. Cochran, Mr. Kohl, Mr. Inouye, Mr. Moynihan, Mr. Chafee, 
        Mr. Daschle and Mr. Breaux):
  S. 419. A bill to provide surveillance, research, and services aimed 
at prevention of birth defects, and for other purposes; to the 
Committee on Labor and Human Resources.


                THE BIRTH DEFECTS PREVENTION ACT OF 1997

  Mr. BOND. Mr. President, I rise today to introduce the Birth Defects 
Prevention Act of 1997. I introduce this on behalf of myself, Senators 
Lott, Daschle, Hollings, Hutchinson of Arkansas, Cochran, Kohl, Inouye, 
Moynihan, Chafee, and Breaux.
  The March of Dimes and their volunteers are here today to lend 
support to an often overlooked, but a very compelling health care 
problem in the

[[Page S2130]]

United States today. Many people do not realize that birth defects are 
the leading cause of infant deaths in the United States. This year 
alone, an estimated 150,000 babies will be born with a serious birth 
defect, and one out of every five of these babies will die. Nationally, 
birth defects affect 3 percent of all births, and among the babies who 
survive, birth defects are a significant cause of lifelong disability. 
Depending on the particular type of problem and its severity, special 
medical treatment, education, rehabilitation and other services may be 
required into adulthood, costing billions of dollars each year.
  A 1995 Centers for Disease Control and Prevention report revealed 
that the lifetime cost for just 18 common birth defects occurring in a 
single year is $8 billion. Yet, only about 22 percent of those born 
with birth defects are included in these figures. And, of course, it is 
impossible to measure the pain and the heartache that birth defects 
cause.
  Let me share with you just a couple of experiences I have had in 
Missouri. I have worked for a long time to improve children's health. I 
appropriated money in the early 1970's in Missouri to fund the high-
cost, but highly effective, neonatal care units at our hospitals. They 
do a wonderful job of saving very-low-birth-weight babies and babies 
with severe defects. But that is not enough. We can do some things to 
lower the incidence of birth defects, and birth defects can strike any 
family.
  I know, many people say one of the real problems is we have too many 
young women, often unmarried, who do not know that you cannot use 
tobacco or alcohol or drugs during pregnancy without expecting a bad 
birth outcome.
  But there are many other things that we have only recently learned 
that are extremely important. Four hundred milligrams a day of folic 
acid, vitamin B, for women of childbearing years can substantially 
reduce the risk of a child born with spina bifida. A very good friend 
of ours had a child born with spina bifida. He was a wonderful young 
man, but he has had to go through many expensive operations. His 
parents went through much heartache, and he still is not able to move 
as the rest of us can.
  Birth defects can be dealt with if we have a concerted national 
strategy to direct the Centers for Disease Control to collect the 
information on birth defects, to provide funding and support in 
research at the State level and to set up five regional centers to deal 
with birth defects. A few years ago, the incidence of birth defects 
became a very major concern in certain Hispanic communities in 
southwest Texas, and, as a result, the Hispanic caucus joined with me 
in past years, in past sessions of Congress, to sponsor this 
legislation.
  We were able to appropriate some moneys for the Centers for Disease 
Control, but we have not been able to establish a national strategy, 
maybe because there are not lobbyists for those who have not yet been 
born who may be at risk of birth defects, but there are effective 
spokespeople, like the March of Dimes, the American Academy of 
Pediatrics, and a long list of distinguished organizations.
  The time has come to join with them, with the Easter Seals Society, 
the American Hospital Association, and all of the other organizations, 
in developing and directing the Centers for Disease Control to work 
with States and local governments to survey birth defects, to bring 
together the information on birth defects so that researchers have a 
means of dealing with it.
  Mr. President, birth defects are the leading cause of infant death in 
the United States. This year alone, an estimated 150,000 babies will be 
born with a serious birth defect, and 1 out of every 5 of these babies 
will die.
  In addition, birth defects affect 3 percent of all births nationally.
  Among babies who survive, birth defects are a significant cause of 
lifelong disability. Depending on the particular type of problem and 
its severity, special medical treatment, education, rehabilitation, and 
other services may be required into adulthood--costing billions of 
dollars each year.
  A 1995 Centers for Disease Control and Prevention report revealed 
that the lifetime cost for just 18 common birth defects occurring in a 
single year is $8 billion--yet only about 22 percent of those born with 
birth defects are included in these figures.
  And, of course, it is impossible to measure the pain and heartache 
that birth defects cause.
  It may surprise you to learn that the United States does not have a 
coordinated strategy for reducing the incidence of birth defects. It is 
both shocking and disappointing how few Federal resources are devoted 
to prevent this tragic, perhaps even partly preventable public health 
problem.
  So today, in an effort to tackle this devastating problem head on, I 
am introducing the Birth Defects Prevention Act of 1997. Congressmen 
Solomon Ortiz and Henry Bonilla are simultaneously introducing this 
bill in the House of Representatives.
  This bill will prioritize our efforts and make congressional intent 
clear--more resources should be directed to the prevention of the 
leading killer of babies, birth defects.
  An unfortunate situation in the State of Texas a few years ago 
exemplifies how the lack of a birth defects prevention strategy delayed 
the response to an outbreak of birth defects and may have needlessly 
cost innocent lives. Health professionals in Texas observed that six 
infants were born with anencephaly over a 6-week period. Anencephaly is 
a fetal birth defect characterized by an absence of brain tissue.
  The Texas Department of Health conducted a study after this 
information was reported. The study revealed that since 1989, at least 
30 infants in south Texas had been born without or with little brain 
tissue. However, because Texas did not have a birth defects 
surveillance program, the severity of the problem was not recognized 
until the incidence of anencephaly was so high that it was difficult to 
miss.
  This tragic event in south Texas underscores the need for a 
coordinated national effort to research the causes of birth defects and 
to prevent such defects from occurring in the first place. A little 
prevention goes a long way in preventing family pain and heartache. It 
is up to our Nation to seize on this excellent opportunity to protect 
our most vulnerable resources--our children.
  To achieve the goal of protecting our Nation's kids, this legislation 
does several things.
  First, the bill provides Federal grants to State health authorities 
for the purpose of collecting, analyzing, and reporting birth defects 
statistics. Today, only about half of the States have some kind of 
birth defects surveillance system.
  Second, this legislation calls for the establishment of at least five 
regional centers of birth defects prevention research. These regional 
programs will collect and analyze information on the number, incidence, 
and causes of birth defects within a region as well as provide 
education and training for health professionals aimed at the prevention 
of birth defects.
  At least one of the centers will focus on birth defects among ethnic 
minorities.
  Third, the Centers for Disease Control and Prevention [CDC] is 
directed to be the coordinating agency for birth defects prevention 
activities. The CDC will serve as a clearinghouse for the collection 
and storage of data generated from State and regional birth defects 
monitoring programs.
  Finally, grants will be available to State departments of health, 
universities, or other private, or nonprofit entities to develop and 
implement birth defect prevention strategies, such as programs using 
folic acid vitamin supplements to prevent spina bifida and alcohol 
avoidance strategies to prevent fetal alcohol syndrome.
  Again, when we talk about birth defects, it is important to note that 
many birth defects are preventable. For instance, we now know that a 
simple 400 mg dose of the B vitamin folic acid each day could prevent 
50 to 70 percent of all cases of spina bifida and anencephaly--saving 
about $245 million annually and more importantly, saving some families 
the heart ache that many of us have witnessed friends and families go 
through.
  We must broaden public and professional awareness of birth defects 
and prevention opportunities, and we must have a coordinated national 
strategy to achieve this goal.
  The economic and emotional burden of birth defects on families and 
society

[[Page S2131]]

as a whole presents a vivid, human picture of the need for a national 
research and prevention strategy.
  Although infant mortality in the United States has been falling 
steadily over the past few decades, 25 other countries have lower 
infant mortality rates than the United States.
  This bill is an important step in improving the health of our Nation. 
The tragedy of birth defects compels our Nation to become a stronger 
partner for charitable and medical groups in fulfilling our obligation 
to protect our Nation's most vulnerable population. Let us hope that 
more tragedies are not necessary to push Congress into action.
  This legislation has the support of many national organizations, 
including: the March of Dimes Foundation, the Spina Bifida Association 
of America, American Academy of Pediatrics, National Association of 
Children's Hospitals, the National Easter Seals Society, American 
Association of Mental Retardation, Association of Maternal and Child 
Health Programs, and the American Hospital Association.
  The bill also has broad bipartisan support.
  Let me conclude by taking special note of the help of the National 
and Missouri March of Dimes, as well as numerous health and child 
advocate organizations, for their assistance in developing and 
advocating this legislation. Specifically, I wish to thank Dr. Jennifer 
Howse, Jo Merrill, and Marina Weiss of the March of Dimes for their 
persistence and commitment to this endeavor.
  Mr. President, I send a copy of the bill to the desk and ask 
unanimous consent that it be printed in the Record.
  There being no objection, the bill was ordered to be printed in the 
Record, as follows:

                                 S. 419

       Be it enacted by the Senate and House of Representatives of 
     the United States of America in Congress assembled,

     SECTION 1. SHORT TITLE; FINDINGS.

       (a) Short Title.--This Act may be cited as the ``Birth 
     Defects Prevention Act of 1997''.
       (b) Findings.--The Congress makes the following findings:
       (1) Birth defects are the leading cause of infant 
     mortality, directly responsible for one out of every five 
     infant deaths.
       (2) Thousands of the 150,000 infants born with a serious 
     birth defect annually face a lifetime of chronic disability 
     and illness.
       (3) Birth defects threaten the lives of infants of all 
     racial and ethnic backgrounds. However, some conditions pose 
     excess risks for certain populations. For example, compared 
     to all infants born in the United States, Hispanic-American 
     infants are more likely to be born with anencephaly spina 
     bifida and other neural tube defects and African-American 
     infants are more likely to be born with sickle-cell anemia.
       (4) Birth defects can be caused by exposure to 
     environmental hazards, adverse health conditions during 
     pregnancy, or genetic mutations. Prevention efforts are 
     slowed by lack of information about the number and causes of 
     birth defects. Outbreaks of birth defects may go undetected 
     because surveillance and research efforts are underdeveloped 
     and poorly coordinated.

     SEC. 2. BIRTH DEFECTS PREVENTION AND RESEARCH PROGRAM.

       Part B of title III of the Public Health Service Act (42 
     U.S.C. 243 et seq.) is amended by inserting after section 
     317F the following:


            ``birth defects prevention and research programs

       ``Sec. 317G. (a) National Birth Defects Surveillance 
     Program.--The Secretary, acting through the Director of the 
     Centers for Disease Control, may award grants to, enter into 
     cooperative agreements with, or provide direct technical 
     assistance in lieu of cash to States, State health 
     authorities, or health agencies of political subdivisions of 
     a State for collection, analysis, and reporting of birth 
     defects statistics from birth certificates, infant death 
     certificates, hospital records, or other sources and to 
     collect and disaggregate such statistics by gender and racial 
     and ethnic group.
       ``(b) Centers of Birth Defects Prevention Research.--
       ``(1) In general.--The Secretary shall establish at least 
     five regional birth defects monitoring and research programs 
     for the purpose of collecting and analyzing information on 
     the number, incidence, correlates, and causes of birth 
     defects, to include information regarding gender and 
     different racial and ethnic groups, including Hispanics, non-
     Hispanic whites, African Americans, Native Americans, and 
     Asian Americans.
       ``(2) Authority for awards.--For purposes of paragraph (1), 
     the Secretary, acting through the Director of the Centers for 
     Disease Control, may award grants or enter into cooperative 
     agreements with State departments of health, universities, or 
     other private, nonprofit entities engaged in research to 
     enable such entities to serve as Centers of Birth Defects 
     Prevention Research.
       ``(3) Application.--To be eligible for grants or 
     cooperative agreements under paragraph (2), the entity shall 
     prepare and submit to the Secretary an application at such 
     time, in such manner and containing such information as the 
     Secretary may prescribe, including assurances that--
       ``(A) the program will collect, analyze, and report birth 
     defects data according to guidelines prescribed by the 
     Director of the Centers for Disease Control;
       ``(B) the program will coordinate States birth defects 
     surveillance and prevention efforts within a region;
       ``(C) education, training, and clinical skills improvement 
     for health professionals aimed at the prevention and control 
     of birth defects will be included in the program activities;
       ``(D) development and evaluation of birth defects 
     prevention strategies will be included in the program 
     activities, as appropriate; and
       ``(E) the program funds will not be used to supplant or 
     duplicate State efforts.
       ``(4) Centers to focus on racial and ethnic disparities in 
     birth defects.--One of the Centers of Birth Defects 
     Prevention Research shall focus on birth defects among ethnic 
     minorities, and shall be located in a standard metropolitan 
     statistical area that has over a 60 percent ethnic minority 
     population, is federally designated as a health professional 
     shortage area, and has an incidence of one or more birth 
     defects more than four times the national average.
       ``(c) Clearinghouse.--The Centers for Disease Control shall 
     serve as the coordinating agency for birth defects prevention 
     activities through establishment of a clearinghouse for the 
     collection and storage of data and generated from birth 
     defects monitoring programs developed under subsections (a) 
     and (b). Functions of such clearinghouse shall include 
     facilitating the coordination of research and policy 
     development to prevent birth defects. The clearinghouse shall 
     disaggregate data by gender and by racial and ethnic groups, 
     the major Hispanic subgroups, non-Hispanic whites, African 
     Americans, Native Americans, and Asian Americans.
       ``(d) Prevention Strategies.--
       ``(1) In general.--The Secretary, acting through the 
     Director of the Centers for Disease Control, shall award 
     grants to or enter into cooperative agreements with State 
     departments of health, universities, or other private, or 
     nonprofit entities to enable such entities to develop, 
     evaluate and implement prevention strategies designed to 
     reduce the incidence and effects or birth defects including--
       ``(A) demonstration projects for the prevention of birth 
     defects, including--
       ``(i) at least one project aimed at enhancing prevention 
     services in a `high-risk area' that has a proportion of birth 
     to minority women above the national average, is federally 
     designated as a health professional shortage area, and has a 
     high incidence of one or more birth defects; and
       ``(ii) at least one outcome research project to study the 
     effectiveness of infant interventions aimed at amelioration 
     of birth defects; and
       ``(B) public information and education programs for the 
     prevention of birth defects, including but not limited to 
     programs aimed at educating women on the need to consume the 
     daily amount of folic acid (pteroylmon oglutomic acid) as 
     recommended by the Public Health Service and preventing 
     alcohol and illicit drug use during pregnancy in a manner 
     which is sensitive to the cultural and linguistic context of 
     a given community.
       ``(2) Consultation.--In carrying out programs under this 
     subsection, the Secretary, acting through the Centers for 
     Disease Control and Prevention, shall consult with State and 
     local governmental agencies, managed care organizations, 
     nonprofit organizations, physicians, and other health 
     professionals and organizations.
       ``(e) Advisory Committee.--
       ``(1) Establishment of committee.--The Secretary shall 
     establish an Advisory Committee for Birth Defects Prevention 
     (in this subsection referred to as the `Committee'). The 
     Committee shall provide advice and recommendations on 
     prevention and amelioration of birth defects to the Secretary 
     and the Director of the Centers for Disease Control.
       ``(2) Functions.--With respect to birth defects prevention, 
     the Committee shall--
       ``(A) make recommendations regarding prevention research 
     and intervention priorities;
       ``(B) study and recommend ways to prevent birth defects, 
     with emphasis on emerging technologies;
       ``(C) identify annually the important areas of government 
     and nongovernment cooperation needed to implement prevention 
     strategies;
       ``(D) identify research and prevention strategies which 
     would be successful in addressing birth defects disparities 
     among the major Hispanic subgroups, non-Hispanic whites, 
     African Americans, Native Americans, and Asian Americans; and
       ``(E) review and recommend policies and guidance related to 
     birth defects research and prevention.
       ``(3) Composition.--The Committee shall be composed of 15 
     members appointed by the Secretary, including--
       ``(A) four health professionals, who are not employees of 
     the United States, who have expertise in issues related to 
     prevention of or care for children with birth defects;

[[Page S2132]]

       ``(B) two representatives from health professional 
     associations;
       ``(C) four representatives from voluntary health agencies 
     concerned with conditions leading to birth defects or 
     childhood disability;
       ``(D) five members of the general public, of whom at least 
     three shall be parents of children with birth defects or 
     persons having birth defects; and
       ``(E) representatives of the Public Health Service agencies 
     involved in birth defects research and prevention programs 
     and representatives of other appropriate Federal agencies, 
     including but not limited to the Department of Education and 
     the Environmental Protection Agency, shall be appointed as ex 
     officio, liaison members for purposes of informing the 
     Committee regarding Federal agency policies and practices;
       ``(4) Structure.--
       ``(A) Term of office.--Appointed members of the Committee 
     shall be appointed for a term of office of 3 years, except 
     that of the members first appointed, 5 shall be appointed for 
     a term of 1 year, 5 shall be appointed for a term of 2 years, 
     and 5 shall be appointed for a term of 3 years, as determined 
     by the Secretary.
       ``(B) Meetings.--The Committee shall meet not less than 
     three times per year and at the call of the chair.
       ``(C) Compensation.--Members of the Committee who are 
     employees of the Federal Government shall serve without 
     compensation. Members of the Committee who are not employees 
     of the Federal Government shall be compensated at a rate not 
     to exceed the daily equivalent of the rate in effect for 
     grade GS-18.
       ``(f) Report.--The Secretary shall prepare and submit to 
     the Committee on Commerce of the House of Representatives and 
     the Committee on Labor and Human Resources of the Senate a 
     biennial report regarding the incidence of birth defects, the 
     contribution of birth defects to infant mortality, the 
     outcome of implementation of prevention strategies, and 
     identified needs for research and policy development to 
     include information regarding the various racial and ethnic 
     groups, including Hispanic, non-Hispanic whites, African 
     Americans, Native Americans, and Asian Americans.
       ``(g) Applicability of Privacy Laws.--The provisions of 
     this section shall be subject to the requirements of section 
     552a of title 5, United States Code. All Federal laws 
     relating to the privacy of information shall apply to the 
     data and information that is collected under this section.
       ``(h) Authorization of Appropriations.--
       ``(1) For the purpose of carrying out subsections (a), (b), 
     and (c), there are authorized to be appropriated $15,000,000 
     for fiscal year 1998, $20,000,000 for fiscal year 1999, and 
     such sums as may be necessary for each of the fiscal years 
     2000 and 2001.
       ``(2) For the purpose of carrying out subsection (d), there 
     are authorized to be appropriated $15,000,000 for fiscal year 
     1998, $20,000,000 for fiscal year 1999, and such sums as may 
     be necessary for each of the fiscal years 2000 and 2001.
       ``(3) For the purpose of carrying out subsections (e) and 
     (f), there are authorized to be appropriated $2,000,000 for 
     each of the fiscal years 1998 through 2001.''.
                                 ______