PREEMIE Reauthorization Act

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 (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.

Mr. Speaker, I rise in support of S. 252, as amended, and urge my colleagues to support the bill as well. As amended, S. 252 is comprised of the authorization or re-authorization of three different programs. Together, these provisions constitute a bi-partisan and bi- cameral effort to address three pressing issues.

Title One of the bill would reauthorize and improve the Prematurity Research Expansion and Education for Mothers Who Deliver Infants Early--or PREEMIE--Act. The PREEMIE Act was first enacted in 2006 in response to an alarming rise in preterm births.

Provisions in Title One reauthorize Centers for Disease Control and Prevention research, surveillance, and prevention activities. The title also extends provider education and training and public education activities; and it adds use of telehealth technology for management of high-risk pregnancies among preferences for telehealth network grants.

This title codifies a Department of Health and Human Services Advisory Committee on Infant Mortality and directs this Committee to examine preterm birth activities across the Department. And it calls for HHS coordination of hospital readmissions studies focused on premature infants. Title One represents a renewed commitment to our nation's efforts to reduce premature births, the leading killer of newborns.

Title Two of S. 252 (as amended) would allow the National Institutes of Health to establish a national pediatric research network dedicated to finding treatments and cures for pediatric diseases and conditions-- especially those that are rare. In addition to the research itself, Title Two places special emphasis on professional training for future pediatric researchers. These and other related components of Title Two are intended to build on the strong body of pediatric research that NIH already conducts and supports.

The goal of this title is to ensure that universities, hospitals, and other nonprofit entities focused on pediatric research have the infrastructure necessary to make clinical research opportunities more accessible to kids and their families. In turn, we hope and expect their work will advance progress towards treatments and cures for many devastating diseases and conditions. I would encourage NIH to take full advantage of this opportunity.

The third and last title of the bill builds upon the 2000 Chimpanzee Health Improvement Maintenance and Protection or CHIMP Act and allows NIH to fulfill its commitment to retiring hundreds of chimpanzees from research. Among other provisions, the CHIMP Act established a sanctuary system for the lifetime care of chimpanzees retired from research and limited NIH spending on care for these chimpanzees.

We are fast-approaching the spending cap set forth in the CHIMP Act. This title authorizes spending for the care and maintenance of chimpanzees owned or controlled by NIH--out of the amounts made available to the agency--for each of fiscal years 2014 through 2018. This title ensures the agency can continue caring for the more than 100 chimpanzees currently in sanctuary. This title also makes it possible for NIH to continue implementing Institute of Medicine recommendations on the use of chimpanzees in research and transition other chimpanzees to sanctuary over time.

As I have noted, this package is a bi-partisan and bi-cameral initiative that reflects the work of several members of the Energy and Commerce Committee. I especially want to note Congresswoman Eshoo, the Democratic sponsor of the original PREEMIE Reauthorization Act and Congresswoman Capps, the Democratic sponsor of the original National Pediatric Research Network Act. I also want to commend Chairman Upton, Chairman Pitts, and Ranking Member Pallone for their leadership in bringing this bipartisan package of public health legislation to the floor. Finally, I want to acknowledge Senate HELP Committee leadership--Senators Harkin and Alexander--for their effort on these measures.

I urge my colleagues to vote for S. 252, as amended.

Mr. Speaker, I rise in support of the PREEMIE Reauthorization Act, bipartisan legislation I introduced with Congressman Leonard Lance to expand research, education, and prevention of preterm birth. This legislation will reauthorize important programs created by the first PREEMIE Act, which I championed in 2006.

November is Prematurity Awareness Month, and it has come with good news. Just days ago, the March of Dimes announced that the preterm birth rate in America dropped for the sixth consecutive year to 11.5 percent largely due to the original PREEMIE Act.

But each year, half a million babies are still born prematurely. Preterm birth is the leading cause of newborn mortality and the second leading cause of infant mortality. Babies born even a few weeks too early can require weeks to months of hospitalization after birth, and premature birth can sometimes lead to developmental delays and disability later in life.

In addition to the emotional and physical toll of prematurity, there are significant health care costs to families, medical systems and our economy. A report by the Institute of Medicine found the cost associated with preterm birth in the United States was $26.2 billion annually, or $51,600 per infant born preterm. While employers, private insurers and individuals bear approximately about half of the costs of health care for these infants, 40 percent is paid by Medicaid.

We are making great strides in reducing infant mortality-the U.S. infant mortality rate fell by 12 percent between 2005 and 2011, in part due to the decline in premature births. Unfortunately, we still fall far behind the majority of other developed countries, and this is something we have the power to change with continued research and prevention.

The PREEMIE Reauthorization Act will help us learn the causes of premature birth by requiring the HHS Advisory Committee on Infant Mortality to develop a report that identifies research gaps and opportunities to implement evidence-based strategies to reduce preterm birth rates. Appropriate representatives of the National Institutes of Health, Centers for Disease Control and Prevention, and the Health and Services Administration should be involved in developing this report along with the experts from the Advisory Committee.

In my Congressional District, Stanford University teamed up with the March of Dimes to establish the transdisciplinary March of Dimes Prematurity Research Center in 2011. These NIH-funded researchers are bringing cutting-edge medical discoveries from the lab to the bedside. In the last two years, they've made new discoveries that reduce preterm birth and made great strides in ensuring that the tiniest preemies are given the best chance at life.

The PREEMIE Reauthorization Act passed the Senate unanimously on September 25th and I ask my colleagues in the House to follow their lead and send this bill to the President's desk for his signature.

Mr. Speaker, I rise in strong support of S. 252, the PREEMIE Reauthorization Act, which will provide vital and continued medical education and research in the national effort to reduce preterm births. This legislation will advance the great progress made since the 2006 act and support Federal research and community involvement in premature birth research.

Our Nation's premature birth rate is among the highest in the world, and it is the leading cause of newborn deaths in the United States. Infants born just a few weeks too soon can face serious health challenges and are at risk for lifelong health and learning disabilities. In addition to its human toll among infants and its toll on their families, premature births cost our Nation's economy much financially, and while the medical community has made great strides in identifying the risk factors associated with premature births, far too many premature births today have no known causes.

It is fitting that the House will consider this legislation this evening. November marks Prematurity Awareness Month, a product of the fine work of the March of Dimes. The March of Dimes estimates that, since 2006, 176,000 fewer babies have been born too soon because of improvements in the preterm birth rate. This is why the Members of the House and the Senate have worked in a bipartisan and bicameral fashion to reauthorize the 2006 act.

I thank Chairman Upton and Chairman Pitts and Ranking Member Waxman and Ranking Member Pallone for their leadership on this issue, as well as Senator Alexander and Senator Harkin and Senator Bennet. I especially want to thank Congresswoman

Anna Eshoo from California for working on this important issue, which benefits the health and well-being of the American people.

This is how Congress should work--together--on issues that make a lasting difference for the American people. It is in that bipartisan spirit that I ask all of my colleagues to join with us in support of the PREEMIE Reauthorization Act so that we as a Nation will be able to continue our focus on premature birth research and prevention.

My thanks also to Congresswoman Capps for her leadership on this issue.