[Congressional Record (Bound Edition), Volume 149 (2003), Part 21]
[House]
[Pages 29755-29758]
[From the U.S. Government Publishing Office, www.gpo.gov]




  BIRTH DEFECTS AND DEVELOPMENTAL DISABILITIES PREVENTION ACT OF 2003

  Mr. BILIRAKIS. Mr. Speaker, I move to suspend the rules and pass the 
Senate bill (S. 286) to revise and extend the Birth Defects Prevention 
Act of 1998.
  The Clerk read as follows:

                                 S. 286

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

     SECTION 1. SHORT TITLE.

       This Act may be cited as the ``Birth Defects and 
     Developmental Disabilities Prevention Act of 2003''.

     SEC. 2. NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL 
                   DISABILITIES.

       Section 317C of the Public Health Service Act (42 U.S.C. 
     247b-4) is amended--
       (1) in subsection (a)(2)--
       (A) in subparagraph (A)--
       (i) by striking ``and developmental disabilities'' and 
     inserting ``, developmental disabilities, and disabilities 
     and health''; and
       (ii) by striking ``subsection (d)(2)'' and inserting 
     ``subsection (c)(2)'';
       (B) in subparagraph (B), by striking ``and'' at the end;
       (C) in subparagraph (C), by striking the period and 
     inserting a semicolon; and
       (D) by adding at the end the following:
       ``(D) to conduct research on and to promote the prevention 
     of such defects and disabilities, and secondary health 
     conditions among individuals with disabilities; and
       ``(E) to support a National Spina Bifida Program to prevent 
     and reduce suffering from the Nation's most common 
     permanently disabling birth defect.'';
       (2) by striking subsection (b);
       (3) in subsection (d)--
       (A) by striking paragraph (1) and inserting the following:
       ``(1) contains information regarding the incidence and 
     prevalence of birth defects, developmental disabilities, and 
     the health status of individuals with disabilities and the 
     extent to which these conditions have contributed to the 
     incidence and prevalence of infant mortality and affected 
     quality of life;'';
       (B) in paragraph (3), by inserting ``, developmental 
     disabilities, and secondary health conditions among 
     individuals with disabilities'' after ``defects'';
       (C) in paragraph (4), by striking ``and'' at the end;
       (D) by redesignating paragraph (5) as paragraph (7); and
       (E) by inserting after paragraph (4) the following:
       ``(5) contains information on the incidence and prevalence 
     of individuals living with birth defects and disabilities or 
     developmental disabilities, information on the health status 
     of individuals with disabilities, information on any health 
     disparities experienced by such individuals, and 
     recommendations for improving the health and wellness and 
     quality of life of such individuals;
       ``(6) contains a summary of recommendations from all birth 
     defects research conferences sponsored by the Centers for 
     Disease Control and Prevention, including conferences related 
     to spina bifida; and'';
       (4) by redesignating subsections (c), (d), and (e) as 
     subsections (b), (c), and (d), respectively;
       (5) by inserting after subsection (d) (as so redesignated), 
     the following:
       ``(e) Advisory Committee.--Notwithstanding any other 
     provision of law, the members of the advisory committee 
     appointed by the Director of the National Center for 
     Environmental Health that have expertise in birth defects, 
     developmental disabilities, and disabilities and health shall 
     be transferred to and shall advise the National Center on 
     Birth Defects and Developmental Disabilities effective on the 
     date of enactment of the Birth Defects and Developmental 
     Disabilities Prevention Act of 2003.''; and
       (6) in subsection (f), by striking ``$30,000,000'' and all 
     that follows and inserting ``such sums as may be necessary 
     for each of fiscal years 2003 through 2007.''.

     SEC. 3. TECHNICAL CORRECTIONS FOR STATE COUNCILS ON 
                   DEVELOPMENTAL DISABILITIES.

       (a) In General.--Section 122(a) of the Developmental 
     Disabilities Assistance and Bill of Rights Act of 2000 (42 
     U.S.C. 15022(a)) is amended--
       (1) in paragraph (3)(A)(ii), by inserting before the period 
     the following: ``, the amount received by the State for the 
     previous year, or the amount of Federal appropriations 
     received in fiscal year 2000, 2001, or 2002, whichever is 
     greater''; and
       (2) in paragraph (4)(A)(ii), by inserting before the period 
     the following: ``, the amount received by the State for the 
     previous year, or the amount of Federal appropriations 
     received in fiscal year 2000, 2001, or 2002, whichever is 
     greater''.
       (b) Effective Date.--The amendments made by subsection (a) 
     shall take effect on October 1, 2003 and apply to allotments 
     beginning in fiscal year 2004.

     SEC. 4. REPORT ON SURVEILLANCE ACTIVITIES.

       Not later than 18 months after the date of enactment of 
     this Act, the Secretary of Health and Human Services jointly 
     with the Secretary of Education shall submit to the Committee 
     on Health, Education, Labor, and Pensions of the Senate and 
     the Committee on Energy and Commerce and Committee on 
     Education and the Workforce of the House of Representatives a 
     report concerning surveillance activities under section 102 
     of the Children's Health Act of 2000 (Public Law 106-310), 
     specifically including--
       (1) a description of the current grantees under the 
     National Autism and Pervasive Developmental Disabilities 
     Surveillance Program and the Centers of Excellence in Autism 
     and Pervasive Developmental Disabilities the data collected, 
     analyzed, and reported under such grants, the sources of such 
     data, and whether such data was obtained with parental 
     consent as required under the Family Educational Rights and 
     Privacy Act of 1974 (20 U.S.C. 1232g);
       (2) a description of current sources of data for the 
     surveillance of autism and developmental disabilities and the 
     methods for obtaining such data, including whether such data 
     was obtained with parental or patient consent for disclosure;
       (3) an analysis of research on autism and developmental 
     disabilities with respect to the methods of collection and 
     reporting, including whether such research was obtained with 
     parental or patient consent for disclosure;
       (4) an analysis of the need to add education records in the 
     surveillance of autism and other developmental disabilities, 
     including the methodological and medical necessity for such 
     records and the rights of parents and patients in the use of 
     education records (in accordance with the Family Educational 
     Rights and Privacy Act of 1974);
       (5) a description of the efforts taken by the Centers for 
     Disease Control and Prevention to utilize education records 
     in conducting the surveillance program while obtaining 
     parental or patient consent for such education records, 
     including the outcomes of such efforts;
       (6) a description of the challenges provided to obtaining 
     education records (in the absence of parental or patient 
     consent) for the

[[Page 29756]]

     purpose of obtaining additional surveillance data for autism 
     and other developmental disabilities; and
       (7) a description of the manner in which such challenges 
     can be overcome, including efforts to educate parents, 
     increase confidence in the privacy of the surveillance 
     program, and increase the rate of parental or patient 
     consent, and including specific quantitative and qualitative 
     justifications for any recommendations for changes to 
     existing statutory authority, including the Family 
     Educational Rights and Privacy Act of 1974.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from 
Florida (Mr. Bilirakis) and the gentleman from Ohio (Mr. Brown) reach 
will control 20 minutes.
  The Chair recognizes the gentleman from Florida (Mr. Bilirakis).


                             General Leave

  Mr. BILIRAKIS. Mr. Speaker, I ask unanimous consent that all Members 
may have 5 legislative days within which to revise and extend their 
remarks and include extraneous material on S. 286, the bill now under 
consideration.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from Florida?
  There was no objection.
  Mr. BILIRAKIS. Mr. Speaker, I yield myself such time as I may 
consume.
  I rise today in support of S. 286, which is the Birth Defects and 
Developmental Disabilities Prevention Act. This legislation will allow 
public health surveillance for developmental disabilities using records 
maintained by local educational institutions.
  A baby born in America today has a life expectancy 30 years longer 
than a child born at the turn of the century. Public health initiatives 
are largely responsible for this vast improvement, but we cannot rest 
on our laurels, Mr. Speaker, because much more remains to be done.
  Many of us have worked diligently to examine many of the difficult 
barriers we face in working to improve children's health and well-
being, and this legislation, initiated by our colleague, the gentleman 
from New Jersey, (Mr. Ferguson), and helped to a large degree by 
another colleague from New Jersey (Mr. Smith) and so many others, the 
gentleman from Ohio (Mr. Brown) and so many others, will assist the 
Centers for Disease Control and Prevention in accurately determining 
the size and scope of many developmental disabilities, including 
autism, mental retardation, and cerebral palsy.
  My hope, Mr. Speaker, is that this information will ultimately help 
us identify causes and possible cures for these disabling, very 
disabling conditions. I might add these diseases are not only disabling 
insofar as the child is concerned, but what it does to the parents is 
just unbelievable. I know we have all seen that, and, hopefully, we can 
find some way to find at least the causes.
  In any case, Mr. Speaker, I urge all of my colleagues to support this 
legislation that the Senate has already passed.
  Mr. Speaker, I reserve the balance of my time.
  Mr. BROWN of Ohio. Mr. Speaker, I yield myself such time as I may 
consume.
  I want to thank my colleague, the gentleman from Maryland (Mr. 
Hoyer), for his tireless work on the issue of developmental 
disabilities, as well as the ranking member of the committee, the 
gentleman from Michigan (Mr. Dingell), and the chairman of the 
committee, the gentleman from Louisiana (Mr. Tauzin), and their staff, 
who deserve plaudits for their work in bringing this to the floor.
  Mr. Speaker, 150,000 children are born each year with a birth defect. 
That is 150,000 families too many who receive the news no new parent 
should ever have to hear. Both genetic and environmental factors can 
cause birth defects, but for over 60 percent of them, the causes still 
remain unknown.
  In 1998, Congress passed the Birth Defects Prevention Act, which 
created a Federal birth defects prevention and surveillance strategy. A 
couple of years later, the gentleman from Florida (Mr. Bilirakis) and I 
introduced and worked together to pass the Children's Health Bill Act 
of 2000, which established the National Center on Birth Defects and 
Developmental Disabilities at the Centers for Disease Control and 
Prevention in Atlanta.
  Passage of these two bills demonstrated a congressional commitment to 
address two significant threats to children's health, birth defects and 
developmental disabilities. The bill we are considering today, the 
Birth Defects and Developmental Disabilities Prevention Act, will 
strengthen that commitment towards children and has the overwhelming 
support of the children's advocacy community.
  The National Center on Birth Defects and Developmental Disabilities 
at CDC does extensive research and provides indispensable resources on 
birth defects, such as autism, spina bifida, and fetal alcohol 
syndrome, as well as research and support focusing on childhood and 
adult disabilities. Passage of this bill will go a long way towards 
continuing these critical efforts.
  The bill also continues the important work States have done 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.
  History has shown when we choose to confront a public health problem 
that threatens the health and lives of children, we can indeed and 
often have stopped it in its tracks. Before the development of the 
polio vaccine in the 1950s, an estimated 50,000 people in the U.S. were 
affected by polio each year. With the widespread vaccination of 
children beginning in the 1950s, polio has been virtually eliminated in 
the United States, and there have been no new cases since 1991.
  Mr. Speaker, I wear on my lapel a pin, which is a canary in a bird 
cage. The mineworkers took a canary down in the mines 100 years ago, 
and if the canary died, the mineworker knew he had to get out of the 
mines. In those days, 100 years ago, the workers had no real protection 
in the mines from government or from labor unions. In those days, a 
child born in the United States 100 years ago had a life expectancy of 
46, 47, 48 years old. One hundred years later, because of our public 
health infrastructure, because of legislation like the one that the 
gentleman from Florida (Mr. Bilirakis) worked on, because of Medicare 
and Social Security and the safe drinking water and clean air laws and 
seat belt laws and prohibitions on child labor and civil rights laws 
and laws protecting the women and the disabled, we have come so far so 
that our life expectancy is literally three decades longer.
  That is not because of transplants or because of chemotherapy, it is 
mostly because of public health initiatives like we are addressing 
today. The only threat to that, Mr. Speaker, is that some people, 
sometimes in this body, have fallen short on providing for that public 
health infrastructure. We have too often, in efforts to privatize 
Medicare or Social Security or to weaken environmental laws and worker-
safety laws, we have sometimes backslid on some of these advancements 
we have made in the last hundred years.
  Unfortunately, this week is an example, with the bill to privatize 
Medicare, of sliding back. It will do nothing to lengthen people's 
lives. In fact, it will do the opposite. However, today, Mr. Speaker, 
this legislation brought to the floor by the gentleman from Florida 
(Mr. Bilirakis), the gentleman from Maryland (Mr. Hoyer), and I, the 
gentleman from Michigan (Mr. Dingell), the gentleman from Louisiana 
(Mr. Tauzin), and others will, in fact, strengthen that public health 
system, will, in fact, strengthen the Centers for Disease Control to 
help us and them tackle other children's health problems with the same 
resolve that we tackled polio.
  Passage of the Birth Defects and Developmental Disabilities 
Prevention Act is an important step towards that goal, and I urge my 
colleagues to support it.
  Mr. Speaker, I reserve the balance of my time.
  Mr. BILIRAKIS. Mr. Speaker, I yield myself such time as I may 
consume, and I want to thank the gentleman for all those comments. He 
puts it so very well.
  My oldest son, Emmanuel, is a physician, an internist. He works 
awfully

[[Page 29757]]

hard, puts in a lot of hours and does not make much money. Sort of like 
the late father of the gentleman from Ohio (Mr. Brown). But when he was 
going through his rotation, he told me the toughest one was the one 
dealing with pediatrics, with children, and to see some of these 
parents, particularly with the autistic children.
  I would say that the children's health bill that the gentleman from 
Ohio (Mr. Brown) referred to, a great impetus on that, to a large 
degree, was due to the actress Rene Russo. She really pushed us on 
that. She came here and testified, and I am just glad we were able to 
do it. But at the same time, we see all these terrible things 
happening.
  Mr. Speaker, I yield such time as he may consume to the gentleman 
from New Jersey (Mr. Ferguson), the father of this bill, this very 
needed bill, this very great bill.
  Mr. FERGUSON. Mr. Speaker, I want to thank the chairman for the great 
work he has done in helping to shepherd this bill, and also to thank 
the gentleman from Ohio (Mr. Brown) and our friends on the other side 
of the aisle who have worked with us in great cooperation.
  Mr. Speaker, many people are not aware that birth defects affect over 
3 percent of all births in America, and that they are also the leading 
cause of infant death. Among the babies who survive, their birth 
defects often result in lifelong disabilities. Now, thankfully, 
families who are blessed with a special needs child find their hearts 
and minds grow immeasurably as they care for and work to meet the needs 
of their precious new addition. These families also face many 
challenges, however, and we have a responsibility to address those 
disabilities which are, in fact, preventable.
  In 1998, we passed the Birth Defects Prevention Act, which created a 
Federal birth defects prevention and surveillance strategy. This bill 
passed the Senate by a voice vote and the House 405-2. That was 
followed by the Children's Health Act of 2000, which established the 
National Center on Birth Defects and Developmental Disabilities at the 
Center for Disease Control. 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 of 
2003 revises and extends the Birth Defects Prevention Act of 1998. This 
bill is straightforward, and it has the support of the March of Dimes, 
the Spina Bifida Association of America, the Autism Society of America, 
among others. This legislation renews a Federal commitment to 
protecting children's health.
  With the commitment of this Congress, we can help prevent birth 
defects and developmental disabilities in children, we can promote 
child development, and we can ensure the health and wellness among 
children and adults who are living with disabilities. I want to express 
my appreciation, once again, for the chairman's leadership on this 
issue.
  Mr. DINGELL. Mr. Speaker, I strongly support S. 286, the ``Birth 
Defects and Developmental Disabilities Prevention Act of 2003.'' I 
would like to commend my colleagues, particularly Representatives Brown 
and Stupak for working so diligently on this legislation.
  Birth defects are the leading cause of infant mortality in the United 
States, accounting for more than 20 percent of all infant deaths. About 
150,000 babies are born each year with birth defects; this means 
frightening news for the parents of one out of every 28 babies. Both 
genetic and environmental factors can cause birth defects; however, the 
causes of 60 to 70 percent of all birth defects are unknown. These 
shocking numbers compel us to take steps to learn more about their 
causes, to identify factors that may cause or increase the risk of a 
baby having a birth defect, to educate the public about these potential 
risks, and to inform women about how to protect themselves and their 
babies.
  S. 286 reauthorizes the programs of the National Center on Birth 
Defects and Developmental Disabilities at the Centers for Disease 
Control and Prevention (CDC) and requires the Secretary of Health and 
Human Services to conduct research on and promote the prevention of 
birth defects and developmental disabilities. This legislation also 
supports a National spina bifida program to prevent and reduce 
suffering from the Nation's most common permanently disabling birth 
defect. All of these measures will enable the CDC to both expand and 
continue its work in promoting the health of babies, children, and 
adults by working to identify the causes of birth defects and 
developmental disabilities.
  The Birth Defects and Developmental Disabilities Prevention Act of 
2003 is supported by many organizations, including the March of Dimes 
and it deserves our support as well.
  Mr. SMITH of New Jersey. Mr. Speaker, I rise today to support this 
important bill, the Birth Defects and Developmental Disabilities 
Prevention Act, which will bolster our Federal Government's efforts to 
prevent unborn babies from developing birth defects and help these 
special children after birth.
  Specifically, this piece of legislation contains two provisions that 
are especially important to our work helping those who suffer from 
autism and spina bifida, which combined affect more than 1.5 million 
Americans and their families.
  This bill will codify our Government's support for a National Spina 
Bifida Program at the Centers for Disease Control and Prevention (CDC). 
Last year, thanks to widespread support of many in this Chamber, we 
were able to secure initial funding to establish this program. And this 
year, members of the Congressional Spina Bifida Caucus--which I cochair 
along with my friend Congressman Stupak--are working hard to continue 
to grow and develop the program.
  The National Program is working to prevent cases of spina bifida by 
spreading the word to all women of child-bearing age that daily 
consumption of .4 milligrams of folic acid supplements can reduce their 
baby's chance of developing spina bifida by 75 percent. The program is 
working with the National Institutes of Health and other agencies to 
develop new therapies for people born with spina bifida. Additionally, 
it is helping better educate doctors and nurses on how they should best 
care of these patients, and working to reach patients and clinicians 
what they must do to prevent and treat various secondary health 
problems to which people with spina bifida are particularly 
susceptible.
  I look forward to continuing to work with my colleagues in Congress, 
officials at the CDC, and the hardworking advocates with the National 
Spina Bifida Program to help all those living with spina bifida.
  Secondly, S. 286 contains a very important provision addressing an 
ongoing autism surveillance project I authored several years ago and 
which was incorporated as title I of the Children's Health Act. Right 
now, the CDC, in conjunction with state health departments and other 
research entities, is conducting autism surveillance in more than 15 
States, including New Jersey. The rate of diagnosis of new autism 
patients is at least 1 in every 250 people, and may be even higher in 
some regions.
  In order for us to obtain an accurate picture of the Nation's autism 
epidemic, it is absolutely imperative that health officials have the 
ability to gather the data they need. The provision in S. 286 will help 
ensure that the Departments of Health and Human Services and Education 
will work together to gather this much-needed data from education 
records, which are estimated to be the source of more than 40 percent 
of the data in need.
  Without this coordination by health and education officials, we will 
never obtain an accurate picture of the autism epidemic because in 
order to achieve optimum results, we need to know more about this 
disorder, what causes it, and what we can do to prevent it. This data 
being collected is indispensable and will help us improve life for all 
with autism.
  I would like to thank all of my colleagues who helped bring this bill 
to the floor today, and I look forward to continuing to work together 
so we can have healthier, happier babies and families.
  Mr. BROWN of Ohio. Mr. Speaker, I have no further requests for time, 
and I yield back the balance of my time.
  Mr. BILIRAKIS. Mr. Speaker, I yield back the balance of my time.
  The SPEAKER pro tempore. The question is on the motion offered by the 
gentleman from Florida (Mr. Bilirakis) that the House suspend the rules 
and pass the Senate bill, S. 286.
  The question was taken.
  The SPEAKER pro tempore. In the opinion of the Chair, two-thirds of 
those present have voted in the affirmative.
  Mr. BILIRAKIS. Mr. Speaker, on that I demand the yeas and nays.
  The yeas and nays were ordered.
  The SPEAKER pro tempore. Pursuant to clause 8 of rule XX and the 
Chair's prior announcement, further proceedings on this motion will be 
postponed.

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