CONGRESSWOMAN ELISE STEFANIK
On Wednesday, September 19, the House is scheduled to consider H.R. 6163, the National Pediatric Research Network Act of 2012, as amended, under a suspension of the rules, requiring a two-thirds majority vote for passage. This legislation was introduced by Rep. Cathy McMorris Rodgers (R-NY) on July 19, 2012, and referred to the House Energy and Commerce Health Subcommittee, which held a markup and approved the legislation by voice vote on September 11, 2012.
The National Pediatric Research Network Act of 2012 would amend the Public Health Service Act to allow the Director of the National Institutes of Health (NIH), as part of the Pediatric Research Initiative, to provide for the establishment of a national pediatric research network comprised of pediatric research consortia. The Director may award cooperative agreements and grants to entities that strengthen and provide basic support to pediatric research consortia and train researchers. If the grants are awarded, the Director of NIH would be required to ensure that an appropriate number of awards go to consortia that focus primarily on pediatric rare diseases, such as spinal muscular atrophy and Duchenne muscular dystrophy, or are related to birth defects, such as Down syndrome or Fragile X. In addition, the Director of NIH would be required to establish a data coordinating center to support research and distribute scientific findings and provide reports to the Director of NIH and the Commissioner of the Food and Drug Administration.
According to the bill’s sponsor, while children represent 20 percent of the U.S. population, the NIH only spends 5 percent of its extramural funds on pediatric research. 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.
There was no Congressional Budget Office (CBO) cost estimate available for this bill.