National Pediatric Research Network Act of 2013by Representative Fred Upton
Posted on 2013-02-04
UPTON. Mr. Speaker, this legislation, H.R. 225, the National
Pediatric Research Network Act of 2013, indeed brings us a step closer
to helping kids with unmet health needs, especially those with rare
pediatric and genetic diseases. According to the NIH, there are more
than 6,800 rare diseases, and most of them have no treatment or cure;
and, yes, they primarily affect children.
I've met a number of times with one family in my district, the Kennedys, who have two precious little girls, Brielle and Brooke. I actually call them Sleeping Beauty and Cinderella. They have the rare disease called spinal muscular atrophy. They're great kids, and Brielle and Brooke have been little warriors in our effort to make the National Pediatric Research Network a reality.
It is so difficult to conduct research into these diseases due to the very small number of people with that disease, but tonight we're working to provide families like the Kennedys and so many others with greater hope for a cure or advances in treatment.
This bill is going to support and coordinate research on rare pediatric and genetic diseases and help improve the health and well- being of these kids afflicted with these diseases.
This bill establishes a national pediatric research network comprised of pediatric research consortia. These consortia are a proven way to overcome the gaps in research. They include leading institutions that act as partners to consolidate and coordinate research efforts. They're going to promote efficiency and collaboration, which is especially important when a disease impacts just a small number of kids.
This bill is in essence the same bill as H.R. 6163 of the last Congress, which passed in September and was part of S. 1440 in December of 2012. Last month, in January, our committee, the Energy and Commerce Committee, passed this legislation on a very broad bipartisan voice vote.
I want to particularly commend the author of the legislation, Lois Capps. I want to thank Cathy McMorris Rodgers on our side, the Republican side, for her leadership, as well as Joe Pitts, Mr. Waxman, and others. This is a bill that all of us should support, and I would urge my colleagues to do the same thing.
It was unfortunate that last year it took the House a little while to pass this; and in the last waning days of the session, we couldn't get the Senate to move. This year, there's a reason why this is now one of the first bills to pass in the House: to give the Senate the time to get this thing done and get it to the President's desk to have him sign it into law so that he can help not only the Kennedys in my district, but the Kennedys literally in every district around the country and so many kids that deserve our help. We can make a difference tonight, and we will when we pass this on a bipartisan vote.
I thank all those Members and staff, particularly, for getting this to the floor in such a timely fashion.