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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.
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.
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