Speak Up for Children: Why the Pediatric Research Network Act Needs Your Support
Cincinnati Children’s has been advocating along with 27 other children’s hospitals for the National Pediatric Research Network Act to increase funding for pediatric research within the National Institutes of Health (NIH).
The bill – H.R. 6163 – passed unanimously in the U.S. House of Representatives last month and now needs only to clear the Senate to be enacted into law.
If pediatric research is important to you, please visit Cincinnati Children’s advocacy website to e-mail a template letter asking the U.S. senators from your state to support this landmark legislation. Share this link with your family and friends and ask them to submit a letter as well. The more voices we raise for pediatric research the better.
Passage of the National Pediatric Network Act would increase and improve research of children’s illnesses – especially rare and complex diseases – and the development of new treatments to fight them.
It would also organize pediatric research into more of a nationwide system to maximize every NIH dollar spent by encouraging high levels of collaboration, coordination, and sharing of infrastructure and scientific findings among schools and hospitals.
The centerpiece of the legislation is the establishment of up to 20 National Pediatric Research Consortiums at institutions around the country. Each consortia would be comprised of a central academic center coordinating research and clinical work at multiple auxiliary institutions. The network would require all consortia members to exchange information and share resources to maximize dollars spent and learnings.
Within the network, the NIH would be required to award funds to consortia that focus on rare pediatric diseases such as spinal muscular atrophy and Duchenne muscular dystrophy, or those related to birth defects, like Down syndrome or Fragile X.
Children who suffer from these conditions are very fragile, making it difficult for them to travel to participate in clinical trials especially when only one institution is conducting the research. The consortia should make clinical research opportunities more accessible to these kids and their families, and in turn, accelerate the efforts to find treatments and cures for them.
The consortia will also serve as training grounds for future pediatric researchers. Traditionally, pediatric research has been underfunded. This has sometimes resulted in real challenges recruiting the talent necessary to tackle diseases and conditions that affect kids–again, especially those that are rare.
Many adult diseases like Diabetes, heart disease, obesity and hypertension, begin in childhood and are influenced by a child’s genetic make-up. The National Pediatric Research Act will provide early research into these adult conditions. The discovery of new therapies and cures benefit everyone, especially when it comes to managing long-term healthcare costs.
Even though children make up about 20 percent of the U.S. population, the NIH dedicates only about 5 percent of its annual extramural research budget 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.
The National Pediatric Research Network Act is supported by the Children’s Hospital Association, the Federation of Pediatric Organizations, Parent Project Muscular Dystrophy, the National Down Syndrome Society, Fight SMA, and other groups.
Find out why Rep. Cathy McMorris Rodgers (R-WA) supports this bill.