National Pediatric Research Network Act of 2012

Floor Speech

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Mrs. CAPPS. Mr. Speaker, I yield myself 5 minutes.

Mr. Speaker, in the health care profession, we know that children aren't just little adults. They have unique health experiences, treatment needs, and research challenges.

While public and private research has come a long way on pediatric diseases over the years, we also know that we are still far behind on important diagnostics, cures, and treatments for far too many ailing children. That's why I am so pleased to have coauthored the National Pediatric Research Network Act with my colleague and friend, Representative Cathy McMorris Rodgers.

This bipartisan bill would improve research and clinical trials on pediatric diseases. It would train future pediatric researchers and disseminate research findings so quickly so that all children may benefit. It does not replace our current pediatric research investments. Instead, it builds upon the work already being done at the NIH and at research centers across the country by creating, as Chairman Upton said, research consortia to form a nationwide network of pediatric researchers. This is important so that we can make sure that we're always working with the most current science and that information is shared and also verified.

It will expand the geographic scope of research, giving sick kids easier access to research programs and clinical trials. Moreover, this bill will help a wider variety of institutions participating in this critical research while providing training grounds for our next generation of pediatric researchers.

Another key feature to this bill is that it will place an added emphasis on researching children's rare diseases, such as the one already described, spinal muscular atrophy, and to develop new treatments to fight them.

The low prevalence of these diseases makes them particularly hard to research, yet these diseases have such a marked impact on the lives of far too many families and communities. The National Pediatric Research Network Act will be an important step forward to help these families and those who may develop these diseases long into the future.

I want to thank again the leadership of the Energy and Commerce Committee, Chairman Upton, Ranking Member Waxman, Chairman Pitts, and Ranking Member Pallone, for their dedication to this bill; and to the staff, my staff, and especially Ruth Katz, a committee staffer, working to improve the language and to bring this to the floor. I also include my colleague, Congresswoman DeGette, for her leadership on this issue over the years.

And just like Chairman Upton, I would especially like to thank my constituents, dear friends, and a very remarkable family, Bill and Victoria Strong, who are the parents, for their tireless work on behalf of their own daughter, Gwendolyn, who has spinal muscular atrophy as well and just a few weeks ago celebrated an amazing achievement by entering public kindergarten at the age of 5. She's the favorite of all her classmates, and the parents are beside themselves with joy that this remarkable milestone has been achieved. They work day in and day out to make their daughter's world better, and in doing so they have created a very strong community within our larger community of people who care about Gwendolyn, but also care about other children with similar kinds of conditions and what we should be doing as a Nation to stand with them. They have shown how entire communities can come together to fight diseases like SMA.

I urge my colleagues to follow their example. We need to come together now to support this bill, and in doing so we support families like those in Michigan and in Santa Barbara, California, and other places, as well, to do all we can do to make this a law and give them hope and courage for the future.

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Mrs. CAPPS. In closing, Mr. Speaker, the National Pediatric Research Network Act is a very important bill, not just for current and future researchers, but for sick children and their families, today and in the future. It's a bipartisan measure that will really leverage all the good work that is currently being done on pediatric diseases but that will also fill gaps that make it so hard for progress to be made.

I urge full support for this bill, and I yield back the balance of my time.

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