National Pediatric Research Network Act of 2013by Former Representative Henry A. Waxman
Posted on 2013-02-04
WAXMAN. Mr. Speaker, I am pleased to rise in support of H.R. 225,
the National Pediatric Research Network Act of 2013. The House passed
legislation similar to H.R. 225 twice last year. I am hopeful that this
time around we will get this bill over the finish line.
H.R. 225 represents a bi-partisan effort to allow the National Institutes of Health (NIH) to establish a national pediatric research network dedicated to finding treatments and cures for pediatric diseases and conditions--especially those that are rare. The network would be comprised of up to 20 research consortia or groups of collaborating research institutions such as universities and hospitals. These consortia would be investigator-initiated and would conduct basic, clinical, behavioral, and translational research on pediatric diseases and conditions. NIH funding would be used to create the infrastructure necessary to carry out this research.
Within the network, the NIH Director is instructed to ensure that an appropriate number of awards go to those consortia that focus primarily on pediatric rare diseases such as spinal muscular atrophy--or SMA--or birth defects such as Down syndrome. Because these kinds of diseases and conditions are rare and some of the children who suffer from them are very fragile, it makes it difficult for them to travel great distances to participate in clinical trials or other research. This is often the case when--not infrequently--only one institution is conducting such research. The availability of consortia--by definition, multiple cooperating institutions--should make clinical research opportunities far more accessible to these kids and their families. In turn, we would hope they would help speed up the time and effort in finding treatments and cures for these devastating diseases and conditions.
In addition to the research itself, the consortia are expected to serve as training grounds for future pediatric researchers. Traditionally, pediatric research has been underfunded. This has sometimes resulted in real challenges in recruiting the talent necessary to [[Page H325]] tackle diseases and conditions that affect kids--again, especially those that are rare. Thus, H.R. 225 places a special emphasis on pediatric research techniques with the goal of helping to ``prime the pump'' for a greater number of leading edge pediatric researchers.
Taken together, the components of H.R. 225 make for a package that would allow NIH to build on the strong body of pediatric research that it currently conducts and supports. I would encourage NIH to take full advantage of this opportunity.
I want to commend all those members of the Energy and Commerce Committee who have come together to make H.R. 225 happen. I especially want to the note the efforts of Congresswoman Capps and Congresswoman McMorris Rodgers--the sponsors of this bill--for their tireless efforts to bring it before us today.
I urge my colleagues to vote ``yes'' on H.R. 225.
Mr. GENE GREEN of Texas. Mr. Speaker, I support the National Pediatric Research Network Act, H.R. 225. Thank you to Representatives Capps and McMorris-Rodgers for their continued leadership on this issue.
This important bill will allow the National Institutes of Health to focus funding on researching rare and genetic pediatric diseases such as spinal muscular atrophy, muscular dystrophy, Down syndrome, and Fragile X. Because there are such a small number of incidences of these terrible diseases, they are extremely difficult to study. This bill takes steps toward giving our research community the tools necessary to increase research of an array of diseases that cause so much pain and suffering to children and their families.
Increasing our nation's commitment to researching rare pediatric diseases is an area that enjoys bipartisan support. I look forward to voting for this bill and urge my colleagues to do the same.
The SPEAKER pro tempore. The question is on the motion offered by the gentleman from Pennsylvania (Mr. Pitts) that the House suspend the rules and pass the bill, H.R. 225.
The question was taken.
The SPEAKER pro tempore. In the opinion of the Chair, two-thirds being in the affirmative, the ayes have it.