National Pediatric Research Network Act of 2013by Representative Sheila Jackson Lee
Posted on 2013-02-04
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.