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…
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, 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.