[Congressional Record Volume 159, Number 160 (Tuesday, November 12, 2013)]
[House]
[Pages H6961-H6967]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
PREMATURITY RESEARCH EXPANSION AND EDUCATION FOR MOTHERS WHO DELIVER
INFANTS EARLY REAUTHORIZATION ACT
Mr. UPTON. 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.
The Clerk read the title of the bill.
The text of the bill is as follows:
S. 252
Be it enacted by the Senate and House of Representatives of
the United States of America in Congress assembled,
SECTION 1. TABLE OF CONTENTS.
The table of contents for this Act is as follows:
Sec. 1. Table of contents.
TITLE I--PREEMIE ACT REAUTHORIZATION
Sec. 101. Short title.
Sec. 102. Research and activities at the Centers for Disease Control
and Prevention.
Sec. 103. Activities at the Health Resources and Services
Administration.
Sec. 104. Other activities.
TITLE II--NATIONAL PEDIATRIC RESEARCH NETWORK
Sec. 201. Short title.
Sec. 202. National Pediatric Research Network.
TITLE III--CHIMP ACT AMENDMENTS
Sec. 301. Short title.
Sec. 302. Care for NIH chimpanzees.
TITLE I--PREEMIE ACT REAUTHORIZATION
SEC. 101. SHORT TITLE.
This title may be cited as the ``Prematurity Research
Expansion and Education for Mothers who deliver Infants Early
Reauthorization Act'' or the ``PREEMIE Reauthorization Act''.
SEC. 102. RESEARCH AND ACTIVITIES AT THE CENTERS FOR DISEASE
CONTROL AND PREVENTION.
(a) Epidemiological Studies.--Section 3 of the Prematurity
Research Expansion and Education for Mothers who deliver
Infants Early Act (42 U.S.C. 247b-4f) is amended by striking
subsection (b) and inserting the following:
``(b) Studies and Activities on Preterm Birth.--
``(1) In general.--The Secretary of Health and Human
Services, acting through the Director of the Centers for
Disease Control and Prevention, may, subject to the
availability of appropriations--
``(A) conduct epidemiological studies on the clinical,
biological, social, environmental, genetic, and behavioral
factors relating to prematurity, as appropriate;
``(B) conduct activities to improve national data to
facilitate tracking the burden of preterm birth; and
``(C) continue efforts to prevent preterm birth, including
late preterm birth, through the identification of
opportunities for prevention and the assessment of the impact
of such efforts.
``(2) Report.--Not later than 2 years after the date of
enactment of the PREEMIE Reauthorization Act, and every 2
years thereafter, the Secretary of Health and Human Services,
acting through the Director of the Centers for Disease
Control and Prevention, shall submit to the appropriate
committees of Congress reports concerning the progress and
any results of studies conducted under paragraph (1).''.
(b) Reauthorization.--Section 3(e) of the Prematurity
Research Expansion and Education for Mothers who deliver
Infants Early Act (42 U.S.C. 247b-4f(e)) is amended by
striking ``$5,000,000'' and all that follows through
``2011.'' and inserting ``$1,880,000 for each of fiscal years
2014 through 2018.''.
SEC. 103. ACTIVITIES AT THE HEALTH RESOURCES AND SERVICES
ADMINISTRATION.
(a) Telemedicine and High-Risk Pregnancies.--Section
330I(i)(1)(B) of the Public Health Service Act (42 U.S.C.
254c-14(i)(1)(B)) is amended by striking ``or case management
services'' and inserting ``case management services, or
prenatal care for high-risk pregnancies'';
(b) Public and Health Care Provider Education.--Section
399Q of the Public Health Service Act (42 U.S.C. 280g-5) is
amended--
(1) in subsection (b)--
(A) in paragraph (1), by striking subparagraphs (A) through
(F) and inserting the following:
``(A) the core risk factors for preterm labor and delivery;
``(B) medically indicated deliveries before full term;
``(C) the importance of preconception and prenatal care,
including--
``(i) smoking cessation;
``(ii) weight maintenance and good nutrition, including
folic acid;
``(iii) the screening for and the treatment of infections;
and
``(iv) stress management;
``(D) treatments and outcomes for premature infants,
including late preterm infants;
``(E) the informational needs of families during the stay
of an infant in a neonatal intensive care unit; and
``(F) utilization of evidence-based strategies to prevent
birth injuries;''; and
(B) by striking paragraph (2) and inserting the following:
[[Page H6962]]
``(2) programs to increase the availability, awareness, and
use of pregnancy and post-term information services that
provide evidence-based, clinical information through
counselors, community outreach efforts, electronic or
telephonic communication, or other appropriate means
regarding causes associated with prematurity, birth defects,
or health risks to a post-term infant;''; and
(2) in subsection (c), by striking ``$5,000,000'' and all
that follows through ``2011.'' and inserting ``$1,900,000 for
each of fiscal years 2014 through 2018.''.
SEC. 104. OTHER ACTIVITIES.
(a) Interagency Coordinating Council on Prematurity and Low
Birthweight.--The Prematurity Research Expansion and
Education for Mothers who deliver Infants Early Act is
amended by striking section 5 (42 U.S.C. 247b-4g).
(b) Advisory Committee on Infant Mortality.--
(1) Establishment.--The Secretary of Health and Human
Services (referred to in this section as the ``Secretary'')
may establish an advisory committee known as the ``Advisory
Committee on Infant Mortality'' (referred to in this section
as the ``Advisory Committee'').
(2) Duties.--The Advisory Committee shall provide advice
and recommendations to the Secretary concerning the following
activities:
(A) Programs of the Department of Health and Human Services
that are directed at reducing infant mortality and improving
the health status of pregnant women and infants.
(B) Strategies to coordinate the various Federal programs
and activities with State, local, and private programs and
efforts that address factors that affect infant mortality.
(C) Implementation of the Healthy Start program under
section 330H of the Public Health Service Act (42 U.S.C.
254c-8) and Healthy People 2020 infant mortality objectives.
(D) Strategies to reduce preterm birth rates through
research, programs, and education.
(3) Plan for hhs preterm birth activities.--Not later than
1 year after the date of enactment of this section, the
Advisory Committee (or an advisory committee in existence as
of the date of enactment of this Act and designated by the
Secretary) shall develop a plan for conducting and supporting
research, education, and programs on preterm birth through
the Department of Health and Human Services and shall
periodically review and revise the plan, as appropriate. The
plan shall--
(A) examine research and educational activities that
receive Federal funding in order to enable the plan to
provide informed recommendations to reduce preterm birth and
address racial and ethnic disparities in preterm birth rates;
(B) identify research gaps and opportunities to implement
evidence-based strategies to reduce preterm birth rates among
the programs and activities of the Department of Health and
Human Services regarding preterm birth, including
opportunities to minimize duplication; and
(C) reflect input from a broad range of scientists,
patients, and advocacy groups, as appropriate.
(4) Membership.--The Secretary shall ensure that the
membership of the Advisory Committee includes the following:
(A) Representatives provided for in the original charter of
the Advisory Committee.
(B) A representative of the National Center for Health
Statistics.
(c) Patient Safety Studies and Report.--
(1) In general.--The Secretary shall designate an
appropriate agency within the Department of Health and Human
Services to coordinate existing studies on hospital
readmissions of preterm infants.
(2) Report to secretary and congress.--Not later than 1
year after the date of the enactment of this Act, the agency
designated under paragraph (1) shall submit to the Secretary
and to Congress a report containing the findings and
recommendations resulting from the studies coordinated under
such paragraph, including recommendations for hospital
discharge and followup procedures designed to reduce rates of
preventable hospital readmissions for preterm infants.
TITLE II--NATIONAL PEDIATRIC RESEARCH NETWORK
SEC. 201. SHORT TITLE.
This title may be cited as the ``National Pediatric
Research Network Act of 2013''.
SEC. 202. NATIONAL PEDIATRIC RESEARCH NETWORK.
Section 409D of the Public Health Service Act (42 U.S.C.
284h; relating to the Pediatric Research Initiative) is
amended--
(1) by redesignating subsection (d) as subsection (f); and
(2) by inserting after subsection (c) the following:
``(d) National Pediatric Research Network.--
``(1) Network.--In carrying out the Initiative, the
Director of NIH, in consultation with the Director of the
Eunice Kennedy Shriver National Institute of Child Health and
Human Development and in collaboration with other appropriate
national research institutes and national centers that carry
out activities involving pediatric research, may provide for
the establishment of a National Pediatric Research Network in
order to more effectively support pediatric research and
optimize the use of Federal resources. Such National
Pediatric Research Network may be comprised of, as
appropriate--
``(A) the pediatric research consortia receiving awards
under paragraph (2); or
``(B) other consortia, centers, or networks focused on
pediatric research that are recognized by the Director of NIH
and established pursuant to the authorities vested in the
National Institutes of Health by other sections of this Act.
``(2) Pediatric research consortia.--
``(A) In general.--The Director of NIH may award funding,
including through grants, contracts, or other mechanisms, to
public or private nonprofit entities for providing support
for pediatric research consortia, including with respect to--
``(i) basic, clinical, behavioral, or translational
research to meet unmet needs for pediatric research; and
``(ii) training researchers in pediatric research
techniques in order to address unmet pediatric research
needs.
``(B) Research.--The Director of NIH shall, as appropriate,
ensure that--
``(i) each consortium receiving an award under subparagraph
(A) conducts or supports at least one category of research
described in subparagraph (A)(i) and collectively such
consortia conduct or support such categories of research; and
``(ii) one or more such consortia provide training
described in subparagraph (A)(ii).
``(C) Organization of consortium.--Each consortium
receiving an award under subparagraph (A) shall--
``(i) be formed from a collaboration of cooperating
institutions;
``(ii) be coordinated by a lead institution or
institutions;
``(iii) agree to disseminate scientific findings, including
from clinical trials, rapidly and efficiently, as
appropriate, to--
``(I) other consortia;
``(II) the National Institutes of Health;
``(III) the Food and Drug Administration;
``(IV) and other relevant agencies; and
``(iv) meet such requirements as may be prescribed by the
Director of NIH.
``(D) Supplement, not supplant.--Any support received by a
consortium under subparagraph (A) shall be used to
supplement, and not supplant, other public or private support
for activities authorized to be supported under this
paragraph.
``(E) Duration of support.--Support of a consortium under
subparagraph (A) may be for a period of not to exceed 5
years. Such period may be extended at the discretion of the
Director of NIH.
``(3) Coordination of consortia activities.--The Director
of NIH shall, as appropriate--
``(A) provide for the coordination of activities (including
the exchange of information and regular communication) among
the consortia established pursuant to paragraph (2); and
``(B) require the periodic preparation and submission to
the Director of reports on the activities of each such
consortium.
``(4) Assistance with registries.--Each consortium
receiving an award under paragraph (2)(A) may provide
assistance, as appropriate, to the Centers for Disease
Control and Prevention for activities related to patient
registries and other surveillance systems upon request by the
Director of the Centers for Disease Control and Prevention.
``(e) Research on Pediatric Rare Diseases or Conditions.--
In making awards under subsection (d)(2) for pediatric
research consortia, the Director of NIH shall ensure that an
appropriate number of such awards are awarded to such
consortia that agree to--
``(1) consider pediatric rare diseases or conditions, or
those related to birth defects; and
``(2) conduct or coordinate one or more multisite clinical
trials of therapies for, or approaches to, the prevention,
diagnosis, or treatment of one or more pediatric rare
diseases or conditions.''.
TITLE III--CHIMP ACT AMENDMENTS
SEC. 301. SHORT TITLE.
This title may be cited as the ``CHIMP Act Amendments of
2013''.
SEC. 302. CARE FOR NIH CHIMPANZEES.
(a) In General.--Section 404K(g) of the Public Health
Service Act (42 U.S.C. 283m(g)) is amended--
(1) by amending paragraph (1) to read as follows:
``(1) In general.--Of the amount appropriated for the
National Institutes of Health, there are authorized to be
appropriated to carry out this section and for the care,
maintenance, and transportation of all chimpanzees otherwise
under the ownership or control of the National Institutes of
Health, and to enable the National Institutes of Health to
operate more efficiently and economically by decreasing the
overall Federal cost of providing for the care, maintenance,
and transportation of chimpanzees --
``(A) for fiscal year 2014, $12,400,000;
``(B) for fiscal year 2015, $11,650,000;
``(C) for fiscal year 2016, $10,900,000;
``(D) for fiscal year 2017, $10,150,000; and
``(E) for fiscal year 2018, $9,400,000.''; and
(2) by striking paragraph (2);
(3) by redesignating paragraph (3) as paragraph (2); and
(4) in paragraph (2), as so redesignated--
(A) by striking ``With respect to amounts reserved under
paragraph (1)'' and inserting ``With respect to amounts
authorized to be appropriated by paragraph (1)''; and
(B) by striking ``board of directors'' and inserting
``Secretary in consultation with the board of directors''.
[[Page H6963]]
(b) GAO Study.--Not later than 2 years after the date of
enactment of this Act, the Comptroller General of the United
States shall conduct an independent evaluation, and submit to
the appropriate committees of Congress a report, regarding
chimpanzees under the ownership or control the National
Institutes of Health. Such report shall review and assess--
(1) the research status of such chimpanzees;
(2) the cost for the care, maintenance, and transportation
of such chimpanzees, including the cost broken down by--
(A) research or retirement status;
(B) services included in the care, maintenance, and
transportation; and
(C) location;
(3) the extent to which matching requirements have been met
pursuant to section 404K(e)(4) of the Public Health Service
Act (42 U.S.C. 283m(e)(4)); and
(4) any options for cost savings for the support and
maintenance of such chimpanzees.
(c) Biennial Report.--Section 404K(g) of the Public Health
Service Act (42 U.S.C. 283m(g)) is amended by adding at the
end the following:
``(3) Biennial report.--Not later than 180 days after the
date enactment of this Act, the Director of the National
Institutes of Health shall submit to the Committee on Health,
Education, Labor, and Pensions and the Committee on
Appropriations of the Senate and the Committee on Energy and
Commerce and the Committee on Appropriations in the House of
Representatives a report, to be updated biennially,
regarding--
``(A) the care, maintenance, and transportation of the
chimpanzees under the ownership or control of the National
Institutes of Health;
``(B) costs related to such care, maintenance, and
transportation, and any other related costs; and
``(C) the research status of such chimpanzees.''.
The SPEAKER pro tempore. Pursuant to the rule, the gentleman from
Michigan (Mr. Upton) and the gentlewoman from California (Mrs. Capps)
each will control 20 minutes.
The Chair recognizes the gentleman from Michigan.
General Leave
Mr. UPTON. 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.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from Michigan?
There was no objection.
Mr. UPTON. 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.
Mrs. CAPPS. 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.
[[Page H6964]]
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. UPTON. Mr. Speaker, I yield 2 minutes to the gentleman from
Pennsylvania (Mr. Pitts), chairman of the Health Subcommittee.
Mr. PITTS. Thank you, Mr. Chairman.
Mr. Speaker, I rise in support of another bipartisan bill. S. 252,
the Prematurity Research Expansion and Education for Mothers who
deliver Infants Early Reauthorization Act, or the PREEMIE
Reauthorization Act, would take important steps to protect and improve
children's health, particularly the health of the nearly 500,000
children born prematurely in the United States every year. Since its
passage in 2006, the PREEMIE Act has sponsored important research that
has led to improved prevention and care of children born too early.
This bill reauthorizes research and activities at the CDC related to
the causes of preterm birth, improving data collection, and preventing
preterm births. It also creates an Advisory Committee on Infant
Mortality to coordinate Federal, State, local, and private programs
that address preterm birth and infant mortality. With one in every
eight infants born in the United States prematurely, this is a pressing
issue.
S. 252 also authorizes the creation of the National Pediatric
Research Network, a proven way to support pediatric research by
coordinating multicentered research activities, including those in
rural areas.
I would like to commend Congressman Lance, Congresswoman Capps,
Congresswoman McMorris Rodgers, Chairman Upton, and Ranking Members
Waxman and Pallone for their leadership in this bipartisan effort, and
I urge all of my colleagues to support this bipartisan bill.
{time} 1715
Mrs. CAPPS. Mr. Speaker, I continue to reserve the balance of my
time.
Mr. UPTON. 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.
Mrs. McMORRIS RODGERS. Mr. Speaker, I rise in strong support of the
PREEMIE Reauthorization Act.
Every 3 minutes, somewhere in the world, a child is diagnosed with
cancer. In the United States, approximately 150,000 children have
diabetes. I believe that medical research is the best investment we can
make to change these statistics and find new cures for these diseases.
In working with my colleague from California, Representative Lois
Capps, we introduced the Pediatric Research Network Act, which is
included in the PREEMIE Reauthorization Act.
In supporting this legislation, the Coalition for Pediatric Medical
Research, which includes Children's Hospital in Seattle--in my home
State--said that this legislation is critical to strengthening our
Nation's pediatric research enterprise. In addition, the Pediatric
Research Network Act will authorize the establishment of a well-proven
and evidence-based approach for addressing pediatric research. It will
enable the National Institutes of Health to support multi-institution
research in order to coordinate and streamline this important research.
Most importantly, it will help to speed cures to the youngest patients.
I urge its support.
Thank you, everyone, for your leadership.
Mrs. CAPPS. Mr. Speaker, I continue to reserve the balance of my
time.
Mr. UPTON. 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.
Mr. LANCE. 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
[[Page H6965]]
Anna Eshoo from California for working on this important issue, which
benefits the health and well-being of the American people.
The SPEAKER pro tempore. The time of the gentleman has expired.
Mr. UPTON. I yield the gentleman an additional 1 minute.
Mr. LANCE. 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.
Mrs. CAPPS. 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.
____
The Coalition for Pediatric
Medical Research,
November 12, 2013.
Hon. Fred Upton,
Chairman, Committee on Energy & Commerce, United States
Congress, Washington, DC.
Hon. Joe Pitts,
Chairman, Committee on Energy & Commerce,
Subcommittee on Health, Washington, DC.
Hon. Henry Waxman,
Ranking Member, Committee on Energy & Commerce, United States
Congress, Washington, DC.
Hon. Frank Pallone,
Ranking Member, Committee on Energy & Commerce, Subcommittee
on Health, Washington, DC.
Dear Chairmen Upton and Pitts and Ranking Members Waxman
and Pallone: On behalf of the Coalition for Pediatric Medical
Research, representing leading children's hospitals
responsible for treating our nation's sickest children today
and conducting research to develop the therapies, treatments,
and cures of tomorrow, I am writing to offer our endorsement
of S. 252, the PREEMIE Reauthorization Act that as amended
includes the National Pediatric Research Network Act as Title
II.
The National Pediatric Research Act is a bipartisan and
bicameral legislative proposal to strengthen our nation's
commitment to pediatric medical research in a cost-effective
manner by allowing the National Institutes of Health to
support multi-institution research consortia focused on
pediatrics. Modeled upon the successful National Cancer
Centers and other research networks, the consortia seek to
accelerate the pace of scientific discovery in pediatrics and
to drive greater levels of collaboration, coordination, and
resource sharing. Funds awarded under the program would help
support the acquisition of shared advanced research
technologies necessary to discharge a 21st Century research
agenda and would also support much-needed training slots for
early-career investigators focusing in pediatrics.
The need for a focused commitment to pediatric research is
clear. A growing body of evidence overwhelmingly demonstrates
that therapies and interventions delivered early in life--
during infancy, childhood and adolescence--prevents diseases
and their life-long adverse impacts on health and economic
contributions to society. Similarly, research on pediatric
populations is useful for understanding the origin of adult-
onset diseases and is useful in preventing and treating such
conditions. When pediatric research as a whole struggles, so
too do our nation's children because of the reduced focus and
funding to pediatric-based disorders and because of limited
access to innovations in care and treatments that help
improve life and reduce healthcare costs.
Every single day, the members of the Coalition for
Pediatric Medical Research care for tens of thousands of
children, a number of whom are suffering from the most deadly
and complex diseases. Thanks to research breakthroughs
achieved over the years, the children's hospitals in the
coalition have made progress in treating a number of
conditions that not too long ago were considered near-certain
death sentences. But making continued progress to heal
children today and tomorrow necessitates a robust commitment
to our nation's children, something that will happen under
this proposal.
Thank you for your strong support of the National Pediatric
Research Network Act and for incorporating the legislation as
Title II of the PREEMIE Reauthorization Act. The Coalition
looks forward to working with you to enact this legislation
into law this year. If you have any questions or would like
to discuss this issue further, please feel free to contact me
at 202.312.7499 or [email protected].
Sincerely,
Nick Manetto,
(For the Coalition for Pediatric Medical Research).
FIGHTSMA,
Alexandria, VA, November 11, 2013.
Hon. Fred Upton, Chairman,
Committee on Energy & Commerce,
U.S. Congress, Washington, DC.
Hon. Henry Waxman, Ranking Member,
Committee on Energy & Commerce,
U.S. Congress, Washington, DC.
Dear Chairman Upton and Ranking Member Waxman: FightSMA is
pleased to offer its enthusiastic endorsement of S. 252, the
PREEMIE Reauthorization Act that as amended includes the
National Pediatric Research Network Act (NPRNA) as Title II.
FightSMA is a non-profit organization of families across the
nation working to find a treatment or cure for spinal
muscular atrophy (SMA), the leading genetic killer of
children under the age of two.
The NPRNA would authorize the establishment of a national
network of research consortia that will conduct basic,
clinical, behavioral, and translational research, including
multisite clinical trials in an effort to develop treatments
for a variety of rare pediatric disorders. The legislation
provides a new opportunity to strengthen the nation's
commitment to pediatric medical research in a cost-effective
manner, allowing us to promote the well-being of our children
through a collaborative approach to scientific investigation
that makes the most of every federal dollar.
FightSMA has been grateful for Congress's longstanding
support for research on SMA and other pediatric diseases,
including House passage of the NPRNA earlier this year on an
overwhelming bipartisan vote and annual appropriations report
language encouraging the National Institutes of Health (NIH)
to expand its support for translational and clinical
research. Privately funded research has produced a number of
promising drug therapies for SMA that are now at the door of
the clinic, and the development of an effective and
accessible clinical trials infrastructure is our next
challenge and our greatest opportunity.
Chairman Upton and Ranking Member Waxman, we are deeply
indebted to you and
[[Page H6966]]
to the NPRNA's lead sponsors, Congresswomen Lois Capps and
Cathy McMorris Rodgers, for your leadership in the effort to
develop treatments for the devastating disorders that affect
too many of our children.
We urge all Members of Congress to support S. 252, and we
look forward to working with you to secure enactment of the
National Pediatric Research Network Act as soon as possible.
Sincerely,
Daniel Hayden,
Executive Director, FightSMA.
Michael Calise,
Chairman, FightSMA.
____
The Humane Society
of The United States,
Washington, DC, November 12, 2013.
Chairman Fred Upton,
Ranking member Henry Waxman,
House Committee on Energy and Commerce,
Washington, DC.
Dear Chairman Upton and Ranking Member Waxman: On behalf of
The Humane Society of the United States and the Humane
Society Legislative Fund, we are writing to express our
strong support for Title III of S. 252, which will allow the
National Institutes of Health (NIH) the continued flexibility
to send chimpanzees retired from research to suitable
sanctuary and to care for chimpanzees already living at the
national chimpanzee sanctuary.
Regardless of where they are housed, NIH has responsibility
for the lifetime care of approximately 600 federally-owned
chimpanzees. It is NIH policy to send chimpanzees to the
national chimpanzee sanctuary system when they are retired
from research, as intended by Congress; sanctuaries provide
higher welfare standards for chimpanzees at a lower cost to
taxpayers than housing in barren labs. Sanctuaries operate
more efficiently than the government-run laboratories, they
bring in substantial private dollars to augment government
support, and they make substantial use of volunteer
personnel.
In response to a comprehensive report by the Institute of
Medicine (IOM), and following the recommendations of an NIH
Working Group of independent experts convened to advise on
implementation of that report, NIH recently announced that it
intends to retire the vast majority of federally-owned
chimpanzees from research. However, the original CHIMP Act,
which established the national chimpanzee sanctuary system,
included a limit on the amount of money NIH can spend on
sanctuary care and housing of retired chimpanzees. There is
no similar restriction on funding for care and housing of
retired chimpanzees in laboratories. Therefore, once NIH
reaches the sanctuary spending limit, it will lose the
ability to contract with appropriate sanctuaries for care and
housing of retired chimpanzees, and may be forced to contract
with lower-welfare, higher-cost labs instead--to the
detriment of chimpanzees and taxpayers alike.
By passing S. 252 Title III, Congress will leave NIH free
to contract with sanctuaries, the most appropriate providers
for chimpanzee care, thus allowing the agency to use its
resources more efficiently and effectively. We strongly
support Title III of S. 252 and thank you for your leadership
on this legislation.
Sincerely,
Wayne Pacelle,
President and CEO,
The Humane Society of the United States.
Michael Markarian,
President,
Humane Society Legislative Fund.
____
March of Dimes Foundation,
Washington, DC, November 11, 2013.
Hon. Fred Upton,
Chairman, Committee on Energy & Commerce, House of
Representatives, Washington, DC.
Hon. Henry Waxman,
Ranking Member, Committee on Energy & Commerce, House of
Representatives, Washington, DC.
Dear Chairman Upton and Ranking Member Waxman: On behalf of
the March of Dimes, a unique collaboration of scientists,
clinicians, parents, members of the business community, and
other volunteers affiliated with 51 chapters representing
every state, the District of Columbia and Puerto Rico, I
would like to express our support for S. 252, a legislative
package which includes the PREEMIE Reauthorization Act. We
strongly urge swift passage of this legislation in both the
House and Senate.
November marks Prematurity Awareness Month, and just days
ago the March of Dimes announced that the United States'
preterm birth rate had dropped for the sixth consecutive
year. In 2012, 11.5 percent of U.S. births were preterm,
compared to 12.8 percent in 2006. The March of Dimes
estimates that since 2006, about 176,000 fewer babies have
been born too soon because of improvement in the preterm
birth rate, resulting in healthier infants and potentially
saving about $9 billion in health and societal costs. We
believe one of the key factors for the decline is the 2006
PREEMIE Act (P.L. 109-450), which brought the first-ever
national focus to prematurity prevention. The law spurred
innovative research at the National Institutes of Health and
Centers for Disease Control and Prevention and supported
evidence-based interventions to prevent preterm birth.
The PREEMIE Reauthorization Act will continue to fuel our
progress by supporting federal research and promoting known
interventions and community initiatives to prevent preterm
birth. Preterm birth exacts a human, emotional, and financial
impact on families and a tremendous economic burden on our
nation. It is the leading cause of newborn mortality and the
second leading cause of infant mortality. Those babies who
survive are more likely to suffer from intellectual and
physical disabilities. A 2006 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. Employers, private insurers and
individuals bear approximately half of the costs of health
care for these infants, and another 40 percent is paid by
Medicaid.
Every baby deserves a healthy start in life, and to make
this goal a reality we must continue to invest in the
prevention of preterm birth. Passage of S. 252 is an
important step toward improving the health and wellbeing of
our nation's children. We look forward to working with you to
secure enactment of this vital legislation.
Sincerely,
Dr. Jennifer L. Howse,
President.
____
March of Dimes Foundation,
White Plains, NY, November 12, 2013
Member of Congress: The undersigned organizations urge you
to vote for S. 252, the PREEMIE Reauthorization Act, when it
is considered under Suspension of the Rules later today.
November marks Prematurity Awareness Month, and just days
ago the March of Dimes announced that the United States'
preterm birth rate had dropped for the sixth consecutive
year. In 2012, 11.5 percent of U.S. births were preterm,
compared to 12.8 percent in 2006. For information on your
state's preterm birth rate please visit http://
www.marchofdimes.com/mission/prematur
ity-reportcard.aspx. The March of Dimes estimates that since
2006, about 176,000 fewer babies have been born too soon
because of improvement in the preterm birth rate, resulting
in healthier infants and potentially saving about $9 billion
in health and societal costs. We believe one of the key
factors for the decline is the 2006 PREEMIE Act (P.L. 109-
450), which brought the first-ever national focus to
prematurity prevention. The law spurred innovative research
at the National Institutes of Health and Centers for Disease
Control and Prevention and supported evidence-based
interventions to prevent preterm birth.
The PREEMIE Reauthorization Act will continue to fuel our
progress by supporting federal research and promoting known
interventions and community initiatives to prevent preterm
birth. Preterm birth exacts a human, emotional, and financial
impact on families and a tremendous economic burden on our
nation. It is the leading cause of newborn mortality and the
second leading cause of infant mortality. Those babies who
survive are more likely to suffer from intellectual and
physical disabilities. A 2006 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. Employers, private insurers and
individuals bear approximately half of the costs of health
care for these infants, and another 40 percent is paid by
Medicaid.
S. 252 is an important step toward improving the health and
wellbeing of our nation's children. Please vote ``yes'' on S.
252.
Sincerely,
March of Dimes, American Academy of Pediatrics, American
Association on Health and Disability, American College of
Nurse-Midwives, American Congress of Obstetricians and
Gynecologists, American Public Health Association, American
Thoracic Society, Association of Maternal & Child Health
Programs.
Association of State and Territorial Health Officials,
Association of Women's Health, Obstetric and Neonatal Nurses,
Council of Women's and Infants' Specialty Hospitals, First
Candle, Global Alliance to Prevent Prematurity and
Stillbirth, National Association of County and City Health
Officials, National Association of Neonatal Nurses,
Preeclampsia Foundation, Society for Maternal-Fetal Medicine.
Mr. UPTON. 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.''
[[Page H6967]]
I yield back the balance of my time.
Mr. WAXMAN. 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. GINGREY of Georgia. Mr. Speaker, I rise today in support of S.
252, the PREEMIE Act. The number of families in this country affected
by premature births is enormous. In 2008, 12.3 percent of all live
births, over 500,000 babies, were born preterm. This number
dramatically influences the rate of infant deaths as about two-thirds
of all fatalities in the first year of life are among preterm infants.
Prematurity or preterm birth is by definition a birth earlier than 37
weeks. Those children are usually not the problem. They're not the ones
that end up with permanent disabilities. But there is a subset of
prematurity, maybe sometimes referred to as ``immaturity'', children
that are born as early as 20 weeks. Those children are the ones that
very often, if they survive, are left with permanent long-term
disabilities. The reauthorization of the PREEMIE Act is important to
study, track, and prevent premature births in this country. This
important legislation before us today will continue the important work
begun in the original bill passed in 2006.
I'll end my remarks with a personal story. My wife, Billie, and I,
have 13 grandchildren and the oldest are 15 years old. They were born
at 26 weeks and each weighed 1 pound and 12 ounces. Thank God they are
virtually unimpaired today and in the ninth grade and doing well. My
family's experience, plus the fact that I delivered numerous preterm
infants as an OBGYN in Marietta, GA, simply reinforces the need for
this bill.
For these important reasons, I support S. 252.
The SPEAKER pro tempore. The question is on the motion offered by the
gentleman from Michigan (Mr. Upton) that the House suspend the rules
and pass the bill, S. 252, as amended.
The question was taken; and (two-thirds being in the affirmative) the
rules were suspended and the bill, as amended, was passed.
The title was amended so as to read: ``An Act 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,
and for other purposes.''.
A motion to reconsider was laid on the table.
____________________