[Congressional Record Volume 158, Number 115 (Tuesday, July 31, 2012)]
[Senate]
[Pages S5735-S5736]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. BROWN of Ohio (for himself, Mr. Wicker, Mr. Kerry, Mr. 
        Blumenthal, Mr. Whitehouse, and Mr. Begich):
  S. 3461. A bill to amend title IV of the Public Health Service Act to 
provide for a National Pediatric Research Network, including with 
respect to pediatric rare diseases or conditions; to the Committee on 
Health, Education, Labor, and Pensions.
  Mr. BROWN of Ohio. Mr. President, over the last few years, our 
country has grappled with rising health care costs.
  While we are making strides, there is one area of health care that is 
lagging behind: pediatric research.
  Children comprise 20 percept of the U.S. population, but only about 5 
percent of the National Institutes of Health, NIH, extramural research 
is dedicated to pediatric research.
  If this rate of investment is not expanded, discoveries of new 
treatments and therapies for some of the most devastating childhood 
diseases and conditions will be hindered, and the next generation of 
researchers will be discouraged from entering into the field of 
pediatrics.
  That is why I have introduced the National Pediatric Research Network 
Act. This act seeks to reverse this trend by strengthening and 
expanding NIH's investments into pediatric research.
  This expanded investment will help accelerate new discoveries and 
directly affect the health and well-being of children throughout our 
Nation.
  My home State of Ohio is home to world-class researchers at topnotch 
research hospitals and universities.
  We must give these institutions, including Cincinnati Children's, 
Rainbow Babies, Children's Hospital, and Nationwide Children's 
Hospitals, the resources to partner with other leading researchers 
across the country.
  This legislation creates such an opportunity.
  The centerpiece of the legislation will be the authorization of up to 
20 National Pediatric Research Consortia.
  They are modeled after the exemplary National Cancer Institute, NCI, 
Centers to help finance efficient and effective, inter-institutional 
pediatric research.
  While NIH is working to advance translational research through 
Clinical & Translational Science Awards, those centers are far-reaching 
and focused primarily on adult diseases and clinical research. In 
contrast, these pediatric centers would be solely dedicated toward 
pediatric research.
  Unlike existing NIH initiatives in which only the largest research 
institutions receive funds, the legislation envisions that each center 
will operate in a ``hub and spoke'' framework with one central academic 
center coordinating research and/or clinical work at numerous auxiliary 
sites. Encouraging collaboration can help ensure efficiency.
  Furthermore, this legislation will encourage research in pediatric 
rare diseases.
  While each rare disease or disorder affects a small patient 
population, it is important to note that 7,000 rare diseases--such as 
epidermolysis bullosa, sickle cell anemia, spinal muscular atrophy, 
Down syndrome, Duchene's muscular dystrophy, and many childhood 
cancers--affect a combined 30 million Americans and their families.

[[Page S5736]]

  What is even more devastating is the fact that children with rare 
genetic diseases account for more than half of the rare disease 
population in the United States.
  As anyone with a rare disease or disorder knows, these patient 
populations face unique challenges.
  It is my hope the National Pediatric Research Network Act will 
increase our understanding of pediatric diseases, improve treatment and 
therapies, and create better health care outcomes for our nation's 
children.
  I thank Senators Wicker, Whitehouse, Kerry, Blumenthal, and Begich 
for joining me as original cosponsors.
                                 ______