[Congressional Record Volume 148, Number 119 (Thursday, September 19, 2002)]
[Senate]
[Pages S8931-S8932]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. BOND (for himself, Mr. Dodd, Mr. Frist, and Mr. Kennedy):
  S. 2980. A bill to revise and extend the Birth Defects Prevention Act 
of 1998; to the Committee on Health, Education, Labor, and Pensions.
  Mr. BOND. Madam President, I rise today to introduce the Birth 
Defects and Developmental Disabilities Prevention Act of 2002. It is a 
pleasure to work, once again, on this important issue with Senators 
Dodd, Kennedy and Frist.
  My interest in birth defects prevention began while I was Governor. 
As Governor I had secured dollars to fund the neonate care units at our 
hospitals in Missouri. These remarkable institutions and the dedicated 
men and women who serve there do a tremendous job of saving low birth 
weight babies and babies with severe birth defects.
  As I visited those hospitals and held those tiny babies, the doctors 
and nurses who staffed these units asked me, ``Why don't we do 
something to reduce the incidents of birth defects and the problems 
that bring the tiniest of infants to these very high-tech, specialized 
care units.''
  Since I became a Senator I have been working with colleagues on both 
sides of the aisle and with the March of Dimes to deal with this 
serious and compelling health problem facing America. Many people are 
not aware that birth defects affect over 3 percent of all births in 
America, and they are the leading cause of infant death.
  This year alone, an estimated 150,000 babies will be born with a 
birth defect. Among the babies who survive, birth defects often result 
in lifelong disability. Medical care, special education, and many other 
services are often required into adulthood, costing families thousands 
of dollars each year.
  In 1992, due to a terrible tradegy in Texas when at least 30 infants 
were born without or with little brain tissue over a short period of 
time, I introduced the Birth Defects Prevention Act.
  Because at the time Texas did not have a birth defects surveillance 
system, and because our country did not have a comprehensive birth 
defects prevention and surveillance strategy, the severity of the 
problem was not

[[Page S8932]]

recognized until the incidence of birth defects was so high that it was 
difficult to miss.
  In 1998, we passed the Birth Defects Prevention Act, which created a 
federal birth defects prevention and surveillance strategy. That was 
followed by the Children's Health Act of 2000, which established the 
National Center on Birth Defects and Developmental Disabilities at CDC. 
With these two important pieces of legislation Congress for the first 
time recognized that birth defect and developmental disabilities are 
major threats to children's health.
  As a result, CDC, through eight regional Centers for Birth Defects 
Research and Prevention are collaborating on the largest study on the 
causes of birth defects ever undertaken, the National Birth Defects 
Prevention Study. CDC is also assisting 28 States by providing 3-year 
grants to improve their surveillance systems. We have come a long way 
in the past 5 years toward preventing certain birth defects, but we 
face many challenges ahead.
  There is still much work to be done to improve the health of all 
Americans by preventing birth defects and developmental disabilities in 
children, promoting optimal child development and ensuring health and 
wellness among child and adults living with disabilities.
  Today, with the introduction of this bill we have the opportunity to 
renew our commitment to birth defects prevention and to improve the 
quality of life of those living with disabilities. I look forward to 
working with my colleagues to ensure and enhance the well-being of our 
Nation's children.
  Mr. FRIST. Madam President, I am pleased to join Senators Bond and 
Dodd in re-introducing the ``Birth Defects and Developmental 
Disabilities Prevention Act of 2002''. This bill reauthorizes the 
National Center on Birth Defects and Developmental Disabilities (NCBDD) 
at the Centers for Disease Control and Prevention to promote optimal 
fetal, infant, and child development and prevent birth defects and 
childhood developmental disabilities.
  Birth defects are the leading cause of infant mortality in the United 
States, accounting for more than 20% of all infant deaths. Of the 
150,000 babies born with a birth defect in the United States each year, 
8000 will die during their first year of life. In addition, birth 
defects are the fifth-leading cause of years of potential life lost and 
contribute substantially to childhood morbidity and long-term 
disability.
  Congress passed the ``Birth Defects Prevention Act in 1998''--a bill 
to assist States in developing, implementing, or expanding community-
based birth defects tracking systems, programs to prevent birth 
defects, and activities to improve access to health services for 
children with birth defects. The authorization for this important 
legislation for this important legislation expires at the end of this 
year, and the legislation we are introducing today will strengthen 
those important programs.
  In order to educate health professionals and the general public, this 
legislation requires NCBDD to provide information on the incidence and 
prevalence of individuals living with birth defects and disabilities, 
any health disparities, experienced by such individuals, and 
recommendations for improving the health and wellness and quality of 
life of such individuals. The Clearinghouse will also contain a summary 
of recommendations from all birth defects research conferences 
sponsored by the agency including conferences related to spina bifida.
  This legislation also clarifies advisory committees, already in 
existence, that have expertise in birth defects, developmental 
disabilities, and disabilities and health will be transferred to the 
National Center for Birth Defects.
  This piece of legislation also supports a National Spina Bifida 
Program to prevent and reduce suffering from the nation's most common 
permanently disabiling birth defect.
  I ask that this piece of important legislation be reauthorized. I 
want to thank my colleagues, Senators Bond, Dodd, and others, for the 
introduction of this initial piece of legislation in 1998 and for their 
continued initiatives on birth defects and developmental disabilities.
                                 ______