[Congressional Record Volume 149, Number 168 (Wednesday, November 19, 2003)]
[House]
[Pages H11577-H11580]
From the Congressional Record Online through the 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;
[[Page H11578]]
``(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 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.
[[Page H11579]]
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 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
[[Page H11580]]
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.
____________________