[Congressional Record Volume 159, Number 18 (Wednesday, February 6, 2013)]
[Extensions of Remarks]
[Pages E103-E104]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




            NATIONAL PEDIATRIC RESEARCH NETWORK ACT OF 2013

                                 ______
                                 

                               speech of

                        HON. SHEILA JACKSON LEE

                                of texas

                    in the house of representatives

                        Monday, February 4, 2013

  Ms. JACKSON LEE. Mr. Speaker, I rise today in support of H.R. 225, 
the ``National Pediatric Research Action Network Act of 2013.'' This 
legislation would authorize the National Institutes of Health (NIH) to 
establish an up to 20 national pediatric research consortia. Each 
consortium will be a collaborative effort involving a leading pediatric 
medical center and numerous supporting institutions, and each will 
focus on both basic and translational research as well as training for 
new researchers. Additionally, this Act seeks to bring much needed 
attention to pediatric rare diseases. The intent is to expand, enhance, 
and improve coordinated NIH pediatric research.
  As the Founder and Co-Chair of the Congressional Children's Caucus I 
have been a tireless advocate on behalf of our nation's children for 
decades and an avid supporter of children's health.
  Improved coordination under the guidance of the NIH will only enhance 
the communication and collaborative efforts between leading regional 
pediatric medical center and supporting smaller community centers. This 
will enable researchers to develop and hone their research on rare 
pediatric diseases such as spinal muscular atrophy, in addition to 
serving as training centers for new cutting edge research in this 
field. Researchers like those who work for the Pediatric Research 
Center.
  Located in Houston, TX, the Pediatric Center is the premier research 
center within the University of Texas Health Science Center. 
Researchers who work at the center are currently working diligently to 
identifying the causes of disorders that affect children. They are 
experts in their fields and working on a variety of issues. One of 
which is trying to identify genes that result in birth defects.
  Across our nation, birth disabilities, developmental disorders, and 
prematurity are leading cause of death in children, affecting nearly 
25% of both newborns and children. We must support efforts to improve 
research. According to the Texas Department of State Health Services as 
of 2009, over 19,000 Texas babies are born each year with one or more 
major structural malformations or chromosomal anomalies.
  For every 10,000 live births, about six births are affected by neural 
tube defects; 11 babies are born with cleft lip, and 13 are born with 
Down syndrome. Approximately 28.9% of all babies born from 1999-2008 
with birth defects have more than one major birth defect. Certain birth 
defects exhibit higher rates in some racial/ethnic groups than others.
  Birth defects are also the leading cause of death among infants in 
Texas. From 1999-2008, 5.3% of all live born babies delivered with a 
birth defect died; most died before their first birthday (4.6%) and 29% 
of all deaths to live born babies before their first birthday occurred 
among babies with a birth defect.
  In 2010, birth defects resulted in nearly 42,000 hospitalizations 
among infants in Texas, with total charges over $2.2 billion, based on 
hospital discharge data. The average length of stay was 6.2 days and 
the average cost was $53,000 per hospitalization. While the average 
cost per hospitalization is comparable to national data, due to the 
large population of Texas relative to other states, total cost of 
hospitalization for infants with birth defects is high.
  Texas has unique concerns about some of the potential causes of birth 
defects such as those concerning environmental pollutants (hazardous 
waste sites, air pollution, drinking water contaminants), health 
disparities (income, ethnicity), and maternal factors (diabetes, 
obesity).
  Effective collaboration with the NIH could result in finding cures 
and treatments to prevent these deaths. Treatments of diseases like 
Spinal Muscular Atrophy.
  Spinal muscular atrophy (SMA) Types I, II, and III are a group of 
hereditary diseases that cause weakness and the destruction of 
voluntary muscles in the arms and legs of infants and children.

[[Page E104]]

  An estimated one in 40 people are carriers of SMA and if both parents 
are carriers, there's a 25 percent chance of their child having SMA.
  Most babies born with SMA Type I, die before their 2nd birthday. It 
is the number 1 genetic killer of children under the age of 2 in the 
United States. As it stands, there is no cure for SMA; however, I hope 
the research that is generated as the result of this bill will lead to 
great strides in tackling this devastating illness.
  As we consider this measure, let us reflect upon the thousands of 
children's lives that might be saved as a result of this bill.


                             STORY OF AVERY

  Lives like that of baby Avery, who was born in Texas. Avery, at 5 
months old was diagnosed with Type 1 SMA and her parents were given the 
grim prognosis that their precious child would only live for another 18 
months. Sadly for Avery's time with us was brief. Just prior to her 
passing, her father Mike pledged that he would work to raise SMA 
awareness. Today we have an opportunity to help Mike achieve his 
promise and through research and the debate on the floor today draw 
further attention to SMA.

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