National Pediatric Research Network Act of 2013

Mr. Speaker, I move to suspend the rules and pass the bill (H.R. 2019) to eliminate taxpayer financing of presidential campaigns and party conventions and reprogram savings to provide for a 10-year pediatric research initiative through the Common Fund administered by the National Institutes of Health, and for other purposes, as amended.

Mr. Speaker, I ask unanimous consent that all Members may have 5 legislative days to revise and extend their remarks and insert extraneous materials in the Record on the bill.

Mr. Speaker, I yield myself 3 minutes.

Mr. Speaker, I rise today in support of the Gabriella Miller Kids First Research Act of 2013. H.R. 2019, authored by my colleague, Gregg Harper, is a bill that will help countless kids and families across the country.

The Gabriella Miller Kids First Research Act would prioritize funding for the research of pediatric diseases and disorders such as cancer, autism, and Fragile X. It would eliminate taxpayer financings of party conventions, political money, and use these funds instead to expand pediatric research at the NIH Common Fund through their common fund. This bill certainly does put kids first.

You know, Gabriella Miller was a little warrior in the battle against childhood cancer. At only 10 years of age, she had the courage miles beyond her years. A frying pan and a walnut is all you need to understand her brave outlook on life.

When she was diagnosed with brain cancer, she was told that the size of that tumor was about like a walnut; and from then on, Gabriella traveled with her trusty frying pan squashing countless walnuts along the way all over the world.

That is the kind of courage and outlook on life that she had. Advancing health research for millions of young patients who suffer from rare and genetic diseases has got to be a priority. While we have made great strides in the country in finding cures and treatments, we certainly have a great amount of work to do. Included in the work is pushing for research that is going to help uncover cures for pediatric diseases.

In order for clinical trials and other advancements to meet their full potential, adequate resources have got to be directed for pediatric research. The legislation is an example of how much can be accomplished by ending wasteful spending and redirecting those funds towards national priorities like pediatric research.

This effort is going to help families like the Kennedys in Mattawan, Michigan, my constituents. Eric and Sarah have two wonderful little girls, Brooke and Brielle, who have the rare disease called spinal muscular atrophy. Those two little angels, who are fighting SMA with the same vigor and sunny outlook exhibited by Gabriella, are decorated little generals in the effort to boost research for rare diseases and serve as inspiration for every one of us.

The sad reality is that it is often difficult to conduct research into rare diseases due to the small number of individuals with those diseases; but we are working to change that--yes, we are--and provide families with greater hope for a cure and in advances of treatment.

This bill has over 150 cosponsors and is supported by a long list of patient advocacy groups including Autism Speaks, Juvenile Diabetes Research Foundation, Leukemia and Lymphoma Society, and FightSMA.

I wholeheartedly agree with the bill's Democrat sponsor, Peter Welch from Vermont, who recently said last night on CNN:

Can we just put the battle axes down for a while and take a

step forward?

He thinks we can. We need to.

With all of us today with so many diseases, we need to pass this bill.

I reserve the balance of my time.

Angelman Syndrome Foundation,

Aurora, IL, July 5, 2013.

Hon. Eric Cantor,

Majority Leader, House of Representatives,United States

Capitol, Washington, DC.

Hon. Gregg Harper,

House of Representatives, Cannon House Office Building,

Washington, DC.

Dear Leader Cantor and Congressman Harper: On behalf of the

Angelman Syndrome Foundation, ASF, I write in strong support

for H.R. 2019, the Kids First Research Act. This important

legislation will

expand pediatric medical research activities at the National

Institutes of Health, NIH, by approximately $130 million.

Pediatric research should be a national priority, and ASF

applauds Congressman Harper for his leadership on this issue.

This legislation has the potential to develop treatments and

unlock the cure for thousands of impacted children, including

those with Angelman Syndrome.

Angelman syndrome is a single-gene neurodevelopmental

disorder that is related to autism. Continued research for

pediatric neurodevelopmental disorders, such as Angelman

syndrome, will lead to effective treatments that will help

combat the autism epidemic in the U.S. The Angelman Syndrome

Foundation's mission is to advance the awareness and

treatment of Angelman syndrome through education and

information, research, and support for individuals with

Angelman syndrome, their families and other concerned

parties. We exist to give all of them a reason to smile, with

the ultimate goal of finding a cure.

On behalf of ASF, thank you again for your leadership and

for supporting the Kids First Research Act.

Sincerely,

Eileen Braun,

Executive Director.

Mr. Speaker, I yield 2 minutes to my friend from Virginia (Mr. Wolf), a member of the Appropriations Committee.

Mr. Speaker, I yield myself 30 seconds.

Mr. Speaker, I just want to remind my friends that this is bipartisan legislation. I congratulate Mr. Welch for being the lead Democratic sponsor.

I just want to say, too, in terms of looking at the money, the bill itself says:

All amounts in each account maintained for the national

committee of a major party or minor party under this section

shall be transferred to a fund in the Treasury to be known as

the ``10-Year Pediatric Research Initiative Fund,'' which

shall be available only for the purpose provided in section

402A(a)2 of the Public Health Service Act, and only to the

extent and in such amounts as are provided in advance in

appropriations Acts.

Tell me how to write it tougher. We did it.

I yield 2 minutes to the gentleman from California, (Mr. McCarthy), the majority whip.

Mr. Speaker, I yield 1 minute to the gentleman from Virginia (Mr. Cantor), majority leader of the House.

Mr. Speaker, I yield 3 minutes to the gentleman from Mississippi (Mr. Harper), the sponsor of the bill.

Mr. Speaker, at this point, I yield 1 minute to the gentleman from New Jersey (Mr. Lance), a cosponsor of the bill and a member of the Energy and Commerce Committee.

Mr. Speaker, at this point, I yield 3 minutes to the gentleman from Oklahoma (Mr. Cole), a member of the Appropriations Committee and a cosponsor of the bill.

Mr. Speaker, I yield 2 minutes to the gentleman from Georgia (Mr. Collins), a cosponsor of the bill.

Mr. Speaker, I yield myself the balance of my time.

Mr. Speaker, I did appreciate the nice words that were directed to me by my friend, Mr. Hoyer, in support of the NIH. And I will remind those that don't know that I was the Republican lead a number of years ago with Mr. Waxman and Mr. McCain and Mr. Wellstone to double the money for the NIH, one of the most significant things that this Congress, I think, has ever done.

But I have got to say, I simply don't understand the opposition to this bill. Yes, I am absolutely supportive of the NIH bill, and will continue to do that, and more money. The Ryan-Murray budget agreement which we will be voting on tomorrow, I will be supporting it. It includes programs like the NIH, which I am told will be increased about $23 billion, or 2 percent over the current levels.

In today's ``The Hill,'' there is a full-page ad offered by First Focus Campaign for Children. It says, ``Thank you for making children your First Focus,'' and it lists maybe as many as 80 to 100 Members, including many of those who spoke today against the bill, but it says, ``Thank you for making children your First Focus.'' That is what this bill is about.

It is not just a simple authorization. Yes, we do pass those from time to time. This actually directs. The language of the bill says, ``shall be transferred.'' Shall. It doesn't use the word ``may,'' ``may be,'' whatever. ``Shall be transferred to a fund in the Treasury to be known as the `10-Year Pediatric Research Initiative Fund' which shall''--not may--``which shall be available only for the purpose provided in . . . the Public Health Service Act, and only to the extent and in such amounts as are provided in advance in appropriation Acts.''

We made it pretty tight. The authors of this bill made it pretty tight. Tell me how we can make it tighter.

I yield to the gentleman from Maryland.

Well, to me, we use ``shall'' a number of different times.

Well, that is what we do. We take money.

The money comes from the political conventions. I mean, that is the direct offset that is used.

All of us cry for these families that lose these beautiful little kids. This bill, if it passes and gets enacted, will provide money to help families like Gabriella's, who lost a beautiful little girl, who really used the last year of her life to promote a fund like this and work with the NIH. That is what this should be all about, and I commend Mr. Cantor and others.

The rule that we hear is you have to find an offset when you increase spending. That is what this bill does. And it finds an offset that I think many of us could accept to actually fund the program and direct the dollars to a fund within the NIH to make sure that it works. That is what we want to have happen.

I would urge my colleagues to vote for this bill. Yes, it is under suspension, no amendments. We need a two-thirds vote, so I ask my colleagues to support this bill.

I yield back the balance of my time.

Mr. Speaker, I yield myself such time as I may consume.

I rise in strong support of S. 252, as amended.

As amended, this bipartisan legislation would address critical health care issues through the authorization or reauthorization of three different programs.

Title I of the legislation reauthorizes the Prematurity Research Expansion and Education for Mothers who deliver Infants Early Act, better known as the PREEMIE Act. The PREEMIE Act was initially enacted in 2006 in response to an alarming and rising number of premature deaths. Premature deaths, those that occur prior to 37 weeks of pregnancy, are the leading cause of newborn deaths and long-term neurological disabilities in children.

Since 2006, efforts across the Department of Health and Human Services have contributed to 6 straight years of decline in the preterm birth rate. There is no question we have made progress in addressing preterm birth in this country, yet one in eight babies is still born prematurely. Prevention remains a challenge due to the numerous, complex, and poorly-understood causes.

As a nurse, I know too well the physical cost of prematurity on both mother and child, the emotional costs it takes on parents, and the fiscal cost that prematurity plays in our health care system. Reauthorization of the PREEMIE Act is necessary to continue the progress we have made to date and to do better by improving the health of mothers and babies.

Title II of S. 252, as amended, calls for the establishment of a National Pediatric Research Network at the National Institutes of Health. This title builds upon the strong body of pediatric research the agency currently supports and strengthens it to improve research and clinical trials on pediatric diseases, train pediatric researchers, and to disseminate research findings quickly so that all children may benefit.

By developing a nationwide network of pediatric researchers, renewed efforts can be focused to develop treatments and cures for pediatric diseases and conditions, especially those that are rare.

Children have unique health care experiences, treatment needs, and research challenges; and while public and private research has come a long way on pediatric diseases over the years, we know that we are still far behind on important diagnostics, cures, and treatments for far too many ailing children. That is why this title is so important.

Many of my colleagues know that this legislation is particularly important for one family in my congressional district, the Strongs. Victoria and Bill Strong are focused every day on getting the best care and treatment for their young daughter, Gwendolyn, who has spinal muscular atrophy, the same condition that my colleague Mr. Upton just referred to in his district. Her diagnosis has fundamentally changed the daily lives of their family, her school, and our Santa Barbara community.

The low prevalence of these diseases makes them particularly hard to research, but for those affected, like Gwendolyn and others, a new cure or treatment could mean a world of difference. This title is common sense for Gwendolyn and all the other kids out there facing a rare medical diagnosis, and their families. As title II of this legislation, the National Pediatric Research Network Act is an important step forward to helping these families and those who may develop these diseases long into the future.

I noticed over the weekend there was a marathon that Gwendolyn and her father participated in in my community to raise money for the same purpose as this research would do. So it is both from the public and the private side that there is a concerted effort toward this end.

This network, based upon H.R. 225, bipartisan legislation I authored with my colleague Representative Cathy McMorris Rodgers, passed the House as a stand-alone bill on suspension earlier this year with strong bipartisan support. I am so pleased to see it included in this package today.

Title III of the legislation ensures the National Institutes of Health can continue to care for chimpanzees that have been retired from research. In 2000, Congress passed the Chimpanzee Health Improvement Maintenance and Protection, or CHIMP, Act. The CHIMP Act established a sanctuary system for the lifetime care of chimpanzees no longer used in research, limited NIH spending on care for these chimpanzees, and required matching funds from nonprofit entities contracted by NIH to operate the sanctuary system.

Today, NIH owns or supports hundreds of chimpanzees. Following a report from the Institute of Medicine, NIH has concluded the vast majority of its chimpanzees should be permanently retired from research. This title makes it possible for NIH to continue caring for the more than 100 chimpanzees currently in sanctuary and transition other chimpanzees to sanctuary over time by authorizing appropriate amounts of spending for fiscal years 2014 through 2018 out of the totals made available to the agency. It is a commonsense and humane measure to fulfill the mission of the Institutes and responsibly tend to the chimps in our care.

I want to commend Chairman Upton, Chairman Pitts, Ranking Member Waxman, and Ranking Member Pallone for their leadership in bringing this bipartisan package of public health legislation to the floor, the staff on both sides of the aisle who have worked so hard on this legislation, and the Senate Health Committee leadership of Senators Harkin and Alexander for their efforts on these measures. Moreover, Energy and Commerce members Congresswoman Eshoo, Congressman Lance, Congresswoman DeGette, and Congresswoman McMorris Rodgers are also to be commended for their work on the PREEMIE Act and the National Pediatric Research Network titles.

These are critical bills, all of which deserve strong bipartisan support. I urge my colleagues to join me in supporting S. 252, as amended, and I reserve the balance of my time.

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

Mr. Speaker, in closing, I submit for the Record letters of support from the following organizations: the Children's Hospital Association, the Coalition for Pediatric Medical Research, FightSMA, the Humane Society of the United States, the March of Dimes, and a joint letter from several health professional and public health organizations.

I urge my colleagues to support this important package of public health legislation.

Mr. Speaker, I yield back the balance of my time.

Children's Hospital

Association,

November 11, 2013.

Hon. Fred Upton, Chairman,

House Committee on Energy and Commerce, Washington, DC.

Hon. Henry Waxman, Ranking Member,

House Committee on Energy and Commerce, Washington, DC.

Dear Chairman Upton and Ranking Member Waxman: On behalf of

over 220 of the nation's children's hospitals, I am writing

to urge House passage of S. 252, as amended by the House.

This bill would advance two important priorities for

children's health: enactment of the National Pediatric

Research Network Act and the Prematurity Research Expansion

and Education for Mothers who deliver Infants Early (PREEMIE)

Reauthorization Act.

The National Pediatric Research Network Act would enhance

the national commitment to pediatric research by authorizing

the National Institutes of Health (NIH) to competitively

select pediatric research consortia, each of which would be

comprised of multiple institutions and focused on a specific

research agenda from basic to translational research. As you

know, children are not just ``small adults.'' They require

highly-specialized care and equally specialized research.

Despite children accounting for nearly 20 percent of our

nation's population, the NIH has historically invested a far

smaller percentage of research dollars--between five and 10

percent--in pediatric biomedical research. As a result it is

far more difficult to attract new researchers into the field

of pediatrics, launch and sustain basic and translational

research endeavors and, ultimately, improve the health of our

nation's children by developing safe and effective therapies

and treatments. The National Pediatric Research Network Act

would help provide the infrastructure--including training and

support for younger investigators--that is needed to advance

the field for decades to come.

The original PREEMIE Act (P.L. 109-450) brought the first-

ever national focus to prematurity prevention. Preterm

delivery can happen to any pregnant woman, and in more than

half the cases the underlying causes are unknown. Preterm

birth is the leading cause of neonatal death, and those

babies who survive are more likely to suffer from

intellectual and physical disabilities. Since enactment of

the PREEMIE Act in 2006, the preterm birth rate has declined,

and now stands below 12 percent for the first time in nearly

a decade. The PREEMIE Reauthorization Act will continue to

fuel our progress by supporting federal research and

promoting known interventions and community initiatives.

Reauthorizing the PREEMIE Act is critical to protect and

maintain the current federal preterm birth-related activities

and lay the foundation for future investments.

The Children's Hospital Association is pleased to offer its

support of S. 252, and hopes Congress will enact this

important legislation. On behalf of our member hospitals,

thank you for your continued commitment to improving

children's health.

Sincerely,

Jim Kaufman,

Vice President, Public Policy,

Children's Hospital Association.

Mr. Speaker, I move to suspend the rules and pass the bill (H.R. 225) 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.

Mr. Speaker, I ask unanimous consent that all Members may have 5 legislative days in which to revise and extend their remarks and insert extraneous materials into the Record on the bill.

Mr. Speaker, I yield myself such time as I may consume.

Mr. Speaker, I rise in support and urge my colleagues to vote for H.R. 225, the National Pediatric Research Network Act of 2013.

Simply put, this legislation will foster important research on diseases that affect children. The bill will allow the National Institutes of Health to establish a national research network compromised of pediatric research consortia. According to NIH, 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.

Sadly, there are insufficient therapies for doctors to treat such diseases. The use of pediatric research consortia is a proven way to support pediatric applied research and to promote coordinated research activities that focus on translating research to practice. This will help improve care for children.

As an example, it is important to note that this bill will address some devastating diseases such as spinal muscular atrophy. This is a rare pediatric disease that kills more babies than any other genetic disease. Right now, it is incurable, untreatable, and fatal.

H.R. 225, introduced by Representatives Lois Capps and Cathy McMorris Rodgers, amends the Public Health Service Act so that the director of the NIH, acting through the director of the National Institute of Child Health and Human Development, could provide for the establishment of a national pediatric research network compromised of pediatric research consortia.

The director could award cooperative agreements to those that strengthen and provide basic support to pediatric research consortia and train researchers. Consortia that receive an award would be comprised of cooperating institutions and coordinated by a lead institution. No more than 20 pediatric research consortia could receive awards.

In addition, the Director of NIH would be able to establish a data- coordinating center to support research and distribute scientific findings and provide reports to the Director of the NIH and the Commissioner of the Food and Drug Administration.

The bill would result in no new or increased budget authority, entitlement authority, tax expenditure, or revenues. Nor does the bill contain any earmarks.

So I am pleased to support this legislation. It is my hope that the National Pediatric Research Network will improve our understanding of pediatric diseases, improve treatment and therapies, and provide better health care outcomes for our Nation's children.

I urge my colleagues to vote in favor of H.R. 225, and I reserve the balance of my time.

Mr. Speaker, at this time, I yield such time as he may consume to the chairman of the full committee, the gentleman from Michigan (Mr. Upton).

Mr. Speaker, I am pleased to yield 2 minutes to the gentleman from Mississippi (Mr. Harper).

Mr. Speaker, I would like to include in the Record CBO's cost estimate for H.R. 225. The cost estimate was not available when the committee filed its report on the bill.

I urge all Members to support this important legislation. With that, I yield back the balance of my time.

U.S. Congress,

Congressional Budget Office,

Washington, DC, February 4, 2013.

Hon. Fred Upton,

Chairman, Committee on Energy and Commerce, House of

Representatives, Washington, DC.

Dear Mr. Chairman: The Congressional Budget Office has

prepared the enclosed cost estimate for H.R. 225, the

National Pediatric Research Network Act of 2013.

If you wish further details on this estimate, we will be

pleased to provide them. The CBO staff contact is Jamease

Miles, who can be reached at 226-9010.

Sincerely,

Douglas W. Elmendorf.

Enclosure.

H.R. 225--National Pediatric Research Network Act of 2013

H.R. 225 would authorize the Director of the National

Institutes of Health (NIH) to establish a National Pediatric

Research Network that could provide support for research and

training at up to 20 pediatric research consortia for up to

five years. The bill would require the Director of NIH to

establish a data coordinating center for the consortia. Upon

request by the Centers for Disease Control and Prevention

(CDC), consortia participating in the program would be

required to provide assistance to the CDC to establish or

expand surveillance systems, such as patient registries.

NIH currently supports many research networks that support

research and training focused on pediatric health care needs

and operates data coordinating centers for those networks.

Those networks perform essentially the same activities as the

consortia described in the bill. Existing networks do not

routinely provide assistance to the CDC to establish

surveillance systems. Based on information provided by NIH,

CBO estimates that implementing H.R. 225 would have no effect

on the number of research consortia or data coordinating

centers that NIH would support. CBO expects that CDC would

request assistance from a few networks to establish

surveillance systems. Based on past coordination involving

patient registries, CBO expects that the cost of providing

such support would total about $1 million over five years.

Thus, CBO estimates that implementing H.R. 225 would cost $1

million over the 2014-2018 period, assuming the availability

of appropriated funds.

Enacting the bill would not affect direct spending or

revenues; therefore, pay-as-you-go procedures do not apply.

H.R. 225 contains no intergovernmental or private-sector

mandates as defined in the Unfunded Mandates Reform Act and

would not affect the budgets of state, local, or tribal

governments.

The CBO staff contact for this estimate is Jamease Miles.

The estimate was approved by Holly Harvey, Deputy Assistant

Director for Budget Analysis.

Mr. Speaker, on that I demand the yeas and nays.

Mr. Speaker, I thank the chairman, the gentleman from Michigan.

Mr. Speaker, I rise in strong support of the Gabriella Miller Kids First Research Act. I also would like to thank my colleague, the gentleman from Vermont, for his courage in providing bipartisan support, along with some other colleagues in support of this bill, as well as the Republican cosponsors, Gregg Harper from Mississippi and Tom Cole, my colleague from Oklahoma who is here in this Chamber.

For those colleagues who are here in the Chamber, we are joined by Gabriella Miller's parents, Ellyn and Mark Miller, who are in the gallery. I want to thank them for their courage in being here and for their understanding of what goes on on this floor and to not take it in any other way other than we are trying to do what is right in terms of delivering on the legacy of their daughter.

Mr. Speaker, Gabriella Miller, a young girl from Virginia, was only 9 years old when she found out she had an inoperable brain tumor the size of a walnut and wasn't given long to live. Despite her diagnosis, Gabriella and her family chose to fight and share her dream with others of overcoming childhood disease.

Gabriella was so determined that she captivated people's hearts at rallies, through online videos, and raised hundreds of thousands of dollars for the Make-a-Wish Foundation. She even wrote a book for other children about understanding cancer. She poured every remaining ounce of her life into raising awareness for pediatric research for other children, with the hope that they would not have to suffer the same fate. In her last few months, Gabriella left a mark on the world that will never be forgotten.

Mr. Speaker, there is no question that Washington has a spending problem. The problem is not only that we spend too much, but that we are spending taxpayer dollars on the wrong priorities. Medical research for children should be a national priority.

The first NIH bill I scheduled as majority leader was a bipartisan bill authored by Representative Cathy McMorris Rodgers and Representative Lois Capps to strengthen pediatric research networks. The President signed the bill into law last month.

The bill before us today builds on that legislation by providing resources through the NIH Common Fund for high-risk, high-reward research that has the potential to transform pediatric research for children suffering from many different diseases and disorders. For the first time, Congress will establish a Pediatric Research Initiative Fund that will serve as an accountability mechanism to help ensure that dollars are reaching their intended target.

While all of us support the NIH, this bill is an opportunity to push the agency to make big discoveries that will improve and ultimately save so many lives. We don't have to accept the status quo as the best we can achieve. Yes, the NIH needs taxpayer resources, but it also matters how we invest and apply those dollars.

Now, Mr. Speaker, some of my colleagues on the other side of the aisle say this is just a drop in the bucket compared to the sequester cuts. I agree. The sequester cuts were, unfortunately, indiscriminate, and I and my colleagues have proposed alternatives to them, but let's not let Washington politics get in the way of any effort to help these kids. This is one step of many that we should take together.

How many times do we meet parents and families who share their stories and ask for help? I recently had the privilege of meeting Gabriella's parents, Ellyn and Mark, and they personally shared with me Gabriella's fighting spirit. In fact, in one of her last interviews-- and you can view this online--when asked what Gabriella would like to tell our political leaders, she said, ``Stop talking. Start doing. We need action.''

This, Mr. Speaker, is our opportunity to act.

Outside of this building, this legislation has tremendous support. The leading children's research hospitals, United for Medical Research, and over 100 patient advocacy groups support this bill. Currently, it leads all other bills on cosponsor.gov with over 2,500 citizen cosponsors. This kind of support is great, but what matters now are the Members of this House and how they vote. The question before the Members today is simple: What is more important--finding cures for our children or balloons for party conventions and catering for politicians?

The bottom line is that this bill is a choice between allocating moneys for political conventions or pediatric medical research. That is the choice. The bill isn't just about a government agency or taxpayer dollars. It is not about Democratic issues or Republican issues. It is about a cause, frankly, that should unite each and every one of us.

Yes, I would say to my colleague from California that this is a serious first step--it is not everything--but to not sit here and impugn anyone's motives, much less say something that is somehow a commentary that this isn't constructive towards the plight of the parents like the Millers who are around this country and who are searching for some indication that we can break the political gridlock on an issue like this. I align myself with the comments of my colleague from Vermont, who says, Can't we just put down the battle axes for something like this? Can't we all do that for somebody like Gabriella?

Now, Gabriella may no longer be with us, but her fight lives on. I ask, Mr. Speaker, that all of us stand united today and join in this fight.

Again, I want to thank Congressman Gregg Harper, and I want to thank Congressman Peter Welch for introducing this bill as well as to thank Congressman Cole from Oklahoma. Earlier this year, they began the effort to join with so many who have come before in order to raise awareness of the need for medical research and, yes, this time, of the need for us to prioritize the funding for pediatric research.

I would like to thank Gabriella's parents, the Millers, who are so brave in their commitment to this effort and who realize this is just a first step--being here with us today and joining us in this fight.

I strongly urge my colleagues to support this bill.

Announcement by the Speaker Pro Tempore

Mr. Speaker, I move to suspend the rules and pass the bill (S. 252) to reduce preterm labor and delivery and the risk of pregnancy-related deaths and complications due to pregnancy, and to reduce infant mortality caused by prematurity, as amended.

Mr. Speaker, I ask unanimous consent that all Members may have 5 legislative days in which to revise and extend their remarks and insert extraneous materials in the Record on the bill.

Mr. Speaker, I yield myself such time as I may consume.

Mr. Speaker, S. 252, known as the PREEMIE Reauthorization Act, is designed to strengthen health care for children--especially vulnerable children. Not only does the bill reauthorize the PREEMIE Act, but it also includes the authorization of the National Pediatric Research Network and the reauthorization of the Chimp Act.

The original PREEMIE Act that I sponsored and was signed into law back in December 2006 brought much-needed attention to the problems related to preterm birth. Since its enactment, we have made progress, but we can and we still must do better. According to the CDC, an estimated half million babies are born prematurely every year in the United States; that is about one in eight. This legislation will continue and strengthen the ongoing effort to track, prevent, and treat prematurity, ensuring that every child has a healthy start and a better chance at a healthy and productive future.

In addition to addressing premature births, this legislation also seeks to help children and their families with unmet health needs. The National Pediatric Research Network brings us a step closer to providing more help to children with rare pediatric and genetic diseases. This effort is going to help families like the Kennedys in my district in Mattawan, Michigan.

Eric and Sarah Kennedy have two wonderful little daughters, Brooke and Brielle--Brielle is here in this picture--who have a rare spinal disease called spinal muscular atrophy. These two little angels, who are also affectionately known, at least in my family, as Sleeping Beauty and Cinderella, are two little warriors in the effort to boost research for rare diseases and serve as an inspiration for every one of us.

The sad reality is that it is often difficult to conduct research into rare diseases due to the small number of kids with that disease; but today, with this bill, we are working to change that and provide families with greater hope for a cure or advances in treatment.

This bill will help establish pediatric research networks and consortia that are effective in overcoming gaps in networks. Networks and consortia will be comprised of leading institutions that act as partners to consolidate and coordinate research efforts. As this multiyear effort is finally nearing the finish line, we say to the Kennedys and so many other families across the country in similar circumstances, You are not alone in this fight.

Lastly, this package includes reauthorization of the Chimp Act of 2000 that helped establish the sanctuary system for chimps retired from research. This bill reauthorizes the program at the current spending level for NIH's care of chimpanzees and reduces it through the next 5 years. It also is going to require the GAO to study how NIH cares for the chimps and asks GAO to identify how we can further save taxpayer money.

I want to particularly commend Ms. Eshoo, Mr. Lance, Mrs. Capps who is here tonight, Mrs. McMorris Rodgers, and, in the Senate, certainly Chairman Harkin and Ranking Member Alexander for their wonderful efforts on this legislative package. Working together, we are making a difference in the lives of so many.

So I would urge my colleagues to join me in support of this legislation, and I reserve the balance of my time.

Mr. Speaker, I yield 2 minutes to the gentleman from Pennsylvania (Mr. Pitts), chairman of the Health Subcommittee.

Mr. Speaker, at this point, I yield 2 minutes to the gentlelady from Washington, Mrs. Cathy McMorris Rodgers, a leading advocate of this legislation and the chairman of the Republican Conference.

Mr. Speaker, I yield 2 minutes to the gentleman from New Jersey (Mr. Lance), another author of this legislation and someone who helped carry it across its bipartisan path.

I yield the gentleman an additional 1 minute.

I yield myself the balance of my time.

Mr. Speaker, every one of us has beautiful children like in this our districts. This bill is going to save lives, and it has been bipartisan from the get-go.

Again, I want to commend Republicans and Democrats on our committee-- but certainly those on the House floor as well--when we passed this bill a number of months ago.

I was a speaker and a participant in an event just last week for FasterCures, a networking group from around the country. Dr. Francis Collins was there, who is the head of the NIH. I spoke to Dr. Collins just in the last hour or so, and he is delighted that this legislation is reaching the House floor tonight. Hopefully, it will pass. I know that we are going to continue to make a real difference in the lives of families, and that is what this is all about, so I would urge all of my colleagues to vote ``yes.''

I yield back the balance of my time.