[Congressional Record Volume 149, Number 20 (Tuesday, February 4, 2003)]
[Senate]
[Pages S1888-S1889]
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. 286. A bill to revise and extend the Birth Defects Prevention Act 
of 1998; to the Committee on Health, Education, Labor, and Pensions.
  Mr. BOND. Mr. President, I rise today to introduce the Birth Defects 
and Developmental Disabilities Prevention Act. It is a pleasure to 
work, once again, on this important issue with Senators Dodd, Frist and 
Kennedy.
  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 may other 
services are often required into adulthood, costing families thousands 
of dollars each year.
  In 1998, Congress finally passed a bill I had sponsored for 3 
previous sessions, 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 recognized that 
birth defects and developmental disabilities are major threats to 
children's health.
  The Birth Defects and Developmental Disabilities Prevention Act 
revises and extends the Birth Defects Prevention Act of 1998. This bill 
is straightforward and has the support of the March of Dimes, Spina 
Bifida Association of America, the Autism Society of America, and the 
Coalition for Children's health among others. It: (1) Reauthorizes the 
National Center on Birth Defects and Developmental Disabilities for 5 
years; (2) makes several technical amendments to ensure that the full 
scope of activities conducted by the center are included in statute; 
(3) authorizes CDC to collect data from educational records that are 
necessary to conduct surveillance on developmental disabilities--
including autism--while

[[Page S1889]]

protecting the privacy of individuals and their families; (4) 
authorizes CDC to support a National Spina Bifida Program to promote 
prevention and enhance the quality of life of those living with Spina 
Bifida; (5) authorizes CDC to conduct research and programs on the 
prevention of secondary conditions and the promotion of health and 
wellness in individuals living with disabilities; and (6) finally, the 
bill transfers certain members of the Advisory Committee to the 
Director of the National Center for Environmental Health who have 
expertise in birth defects, developmental disabilities and disabilities 
and health to the National Center on Birth Defects and Developmental 
Disabilities.
  We have come a long way in the past 5 years toward preventing certain 
birth defects and developmental disabilities, 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 children 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. Mr. President, I am pleased to join Senator Bond in 
reintroducing the Birth Defects and Developmental Disabilities 
Prevention Act of 2003. 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 percent of all infant deaths. Of 
the 150,000 babies born with a birth defect in the United States each 
year, 8,000 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 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 on 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 disabling birth defect.
  I ask that this piece of important legislation be reauthorized. I 
want to thank my colleagues, Senator Bond and others, for the 
introduction of this initial piece of legislation in 1998 and for their 
continued initiatives on birth defects and developmental disabilities.
                                 ______