National Pediatric Research Network Act of 2012

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.

Mr. Speaker, I reserve the balance of my time.

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.

Mr. Speaker, I move to suspend the rules and pass the bill (H.R. 6163) to amend title IV of the Public Health Service Act to provide for a National Pediatric Research Network, including with respect to pediatric rare diseases or conditions, as amended.

Mr. Speaker, I yield myself 3 minutes.

Mr. Speaker, this legislation brings us a step closer to providing more help to children with unmet health needs, especially those with rare pediatric and genetic diseases.

According to the National Institutes of Health, the NIH, there are 6,800 rare diseases, and most of these conditions have no treatment or cure, and they primarily affect children. I would guess that everyone in this Chamber is personally aware of the devastating impact of these diseases with some family that they know. I, myself, have spent some time with a family from my district whose children have spinal muscular atrophy, SMA. It is a very rare pediatric disease that is the leading genetic cause of death in infants and toddlers.

These are great kids. I've got a picture of one of them here. When they came to see me, they told me that their names were Cinderella and Sleeping Beauty. They really are. These are just really marvelous children. They're great kids, and it's a source of real sadness that their disease is the kind that is often incurable and often untreatable.

The barriers to research on rare and genetic diseases are those that are common to most research. It's already difficult to initiate the experimental and lengthy research needed to find treatments and cures; however, when the population of patients is so small, maybe only a couple dozen in a State, these problems are even more difficult to solve.

This legislation is going to help us establish pediatric research networks and a consortia that are a proven way to overcome those gaps in research. Networks and consortia will be comprised of leading institutions that act

as partners to consolidate and coordinate research efforts. It promotes efficiency and collaboration, especially when a disease affects just a small number of children.

Mr. Speaker, I would urge all my colleagues to support this bipartisan legislation. I look forward to a strong vote tonight and working with our colleagues in the Senate to make sure that this bill really does get to the President's desk and makes a difference for families that are in search of something that will help them with their kids.

With that, I reserve the balance of my time.

Mr. Speaker, I yield myself 30 seconds.

I just want to again thank Mrs. Capps. As we met these families, we really did not know about these diseases until we saw their courage and what they do as they confront this every day. It's marvelous for me, as I now have visited my family that has this disease 2 years in a row. It's great to see them grow and remember where they were and to really think that there's going to be hope with the legislation that we can see that is done.

With that, I yield 5 minutes to the gentlelady from Washington State, Cathy McMorris Rodgers, who has also been, as we look at a bipartisan leadership, a real trooper to move this legislation not only through our committee, but now on the House floor.

Mr. Speaker, I yield 2 minutes to the chairman of the Health Subcommittee, the gentleman from Pennsylvania, Joe Pitts, in support of the legislation.

Mr. Speaker, in closing, I know the hour is late. I would just urge my colleagues to support this bipartisan legislation. I, too, commend every Member that's had a role here and truly appreciate the staff to get this bill prepared and ready for us to vote on tonight.

I yield back the balance of my time.

Mr. Speaker, I am pleased to rise in support of H.R. 6163, the National Pediatric Research Network Act of 2012.

H.R. 6163 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 pediatric birth defects such as Down syndrome. These kinds of diseases and conditions are rare and some of the children who suffer from them are very fragile, making 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 tackle diseases and conditions that affect kids--again, especially those that are rare. Thus, H.R. 6163 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. 6163 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.

As we move forward with this legislation--here, and hopefully, in the Senate--I want to commend all those members of the Energy and Commerce Committee who have come together to make it happen. I especially want to the note the effort of Congresswoman Capps. She is the lead Democratic sponsor of the bill and has worked tirelessly to bring it before us today.

I urge my colleagues to vote ``yes'' on H.R. 6163.

Mr. Speaker, H.R. 6163, the National Pediatric Research Network Act, seeks to address important unmet needs in pediatric health.

Pediatric research is so important to the health of our children, and it is essential to finding answers for unmet health needs. According to the National Institutes for Health, there are between 6,000 and 7,000 diseases considered rare that affect 25 to 30 million people. Most of the approximately 7,000 rare diseases are pediatric diseases and often genetic. Unfortunately, the doctors do not have sufficient therapies to treat them.

This bill seeks to alleviate that problem by establishing pediatric research networks and consortia. They will help by coordinating research efforts among participating institutions, concentrating that effort on the most pressing needs and enlisting the help of well- trained researchers.

Through my association with Children's Hospital of Philadelphia, I'm aware that there are too many diseases that children and their families face that do not have easy answers, and few adequate treatments. This bill will strengthen basic and clinical research and bring us closer to finding new treatments and cures.

Mr. Speaker, this bill has strong bipartisan support. I urge my colleagues to support the bill.