A bill to reduce the preterm labor and delivery and the risk of pregnancy-related deaths and complications due to pregnancy, and to reduce infant mortality caused by prematurity.

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Prematurity Research Expansion and 
Education for Mothers who deliver Infants Early Act'' or the ``PREEMIE 
Act''.

SEC. 2. FINDINGS AND PURPOSE.

    (a) Findings.--Congress makes the following findings:
            (1) Premature birth is a serious and growing problem. The 
        rate of preterm birth increased 27 percent between 1981 and 
        2001 (from 9.4 percent to 11.9 percent). In 2001, more than 
        476,000 babies were born prematurely in the United States.
            (2) Preterm birth accounts for 23 percent of deaths in the 
        first month of life.
            (3) Premature infants are 14 times more likely to die in 
        the first year of life.
            (4) Premature babies who survive may suffer lifelong 
        consequences, including cerebral palsy, mental retardation, 
        chronic lung disease, and vision and hearing loss.
            (5) Preterm and low birthweight birth is a significant 
        financial burden in health care. The estimated charges for 
        hospital stays for infants with any diagnosis of prematurity/
        low birthweight were $11,900,000,000 in 2000. The average 
        lifetime medical costs of a premature baby are conservatively 
        estimated at $500,000.
            (6) The proportion of preterm infants born to African-
        American mothers (17.3 percent) was significantly higher 
        compared to the rate of infants born to white mothers (10.6 
        percent). Prematurity or low birthweight is the leading cause 
        of death for African-American infants.
            (7) The cause of approximately half of all premature births 
        is unknown.
            (8) Women who smoke during pregnancy are twice as likely as 
        nonsmokers to give birth to a low birthweight baby. Babies born 
        to smokers weigh, on average, 200 grams less than nonsmokers' 
        babies.
            (9) To reduce the rates of preterm labor and delivery more 
        research is needed on the underlying causes of preterm 
        delivery, the development of treatments for prevention of 
        preterm birth, and treatments improving outcomes for infants 
        born preterm.
    (b) Purposes.--It the purpose of this Act to--
            (1) reduce rates of preterm labor and delivery;
            (2) work toward an evidence-based standard of care for 
        pregnant women at risk of preterm labor or other serious 
        complications, and for infants born preterm and at a low 
        birthweight; and
            (3) reduce infant mortality and disabilities caused by 
        prematurity.

SEC. 3. RESEARCH RELATING TO PRETERM LABOR AND DELIVERY AND THE CARE, 
              TREATMENT, AND OUTCOMES OF PRETERM AND LOW BIRTHWEIGHT 
              INFANTS.

    (a) General Expansion of NIH Research.--Part B of title IV of the 
Public Health Service Act (42 U.S.C. 284 et seq.) is amended by adding 
at the end the following:

``SEC. 409J. EXPANSION AND COORDINATION OF RESEARCH RELATING TO PRETERM 
              LABOR AND DELIVERY AND INFANT MORTALITY.

    ``(a) In General.--The Director of NIH shall expand, intensify, and 
coordinate the activities of the National Institutes of Health with 
respect to research on the causes of preterm labor and delivery, infant 
mortality, and improving the care and treatment of preterm and low 
birthweight infants.
    ``(b) Authorization of Research Networks.--There shall be 
established within the National Institutes of Health a Maternal-Fetal 
Medicine Units Network and a Neonatal Research Units Network. In 
complying with this subsection, the Director of NIH shall utilize 
existing networks.
    ``(c) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section, such sums as may be necessary 
for each of fiscal years 2004 through 2008.''.
    (b) General Expansion of CDC Research.--Section 301 of the Public 
Health Service Act (42 U.S.C. 241 et seq.) is amended by adding at the 
end the following:
    ``(e) The Director of the Centers for Disease Control and 
Prevention shall expand, intensify, and coordinate the activities of 
the Centers for Disease Control and Prevention with respect to preterm 
labor and delivery and infant mortality.''.
    (c) Study on Assisted Reproduction Technologies.--Section 1004(c) 
of the Children's Health Act of 2000 (Public Law 106-310) is amended--
            (1) in paragraph (2), by striking ``and'' at the end;
            (2) in paragraph (3), by striking the period and inserting 
        ``; and''; and
            (3) by adding at the end the following:
            ``(4) consider the impact of assisted reproduction 
        technologies on the mother's and children's health and 
        development.''.
    (d) Study on Relationship Between Prematurity and Birth Defects.--
            (1) In general.--The Director of the Centers for Disease 
        Control and Prevention shall conduct a study on the 
        relationship between prematurity, birth defects, and 
        developmental disabilities.
            (2) Report.--Not later than 2 year after the date of 
        enactment of this Act, the Director of the Centers for Disease 
        Control and Prevention shall submit to the appropriate 
        committees of Congress a report concerning the results of the 
        study conducted under paragraph (1).
    (e) Review of Pregnancy Risk Assessment Monitoring Survey.--The 
Director of the Centers for Disease Control and Prevention shall 
conduct a review of the Pregnancy Risk Assessment Monitoring Survey to 
ensure that the Survey includes information relative to medical care 
and intervention received, in order to track pregnancy outcomes and 
reduce instances of preterm birth.
    (f) Study on the Health and Economic Consequences of Preterm 
Birth.--
            (1) In general.--The Director of the National Institutes of 
        Health in conjunction with the Director of the Centers for 
        Disease Control and Prevention shall enter into a contract with 
        the Institute of Medicine of the National Academy of Sciences 
        for the conduct of a study to define and address the health and 
        economic consequences of preterm birth. In conducting the 
        study, the Institute of Medicine shall--
                    (A) review and assess the epidemiology of premature 
                birth and low birthweight, and the associated maternal 
                and child health effects in the United States, with 
                attention paid to categories of gestational age, 
                plurality, maternal age, and racial or ethnic 
                disparities;
                    (B) review and describe the spectrum of short and 
                long-term disability and health-related quality of life 
                associated with premature births and the impact on 
                maternal health, health care and quality of life, 
                family employment, caregiver issues, and other social 
                and financial burdens;
                    (C) assess the direct and indirect costs associated 
                with premature birth, including morbidity, disability, 
                and mortality;
                    (D) identify gaps and provide recommendations for 
                feasible systems of monitoring and assessing associated 
                economic and quality of life burdens associated with 
                prematurity;
                    (E) explore the implications of the burden of 
                premature births for national health policy;
                    (F) identify community outreach models that are 
                effective in decreasing prematurity rates in 
                communities;
                    (G) consider options for addressing, as 
                appropriate, the allocation of public funds to 
                biomedical and behavioral research, the costs and 
                benefits of preventive interventions, public health, 
                and access to health care; and
                    (H) provide recommendations on best practices and 
                interventions to prevent premature birth, as well as 
                the most promising areas of research to further 
                prevention efforts.
            (2) Report.--Not later than 1 year after the date on which 
        the contract is entered into under paragraph (1), the Institute 
        of Medicine shall submit to the Director of the National 
        Institutes of Health, the Director of the Centers for Disease 
        Control and Prevention, and the appropriate committees of 
        Congress a report concerning the results of the study conducted 
        under such paragraph.
    (g) Evaluation of National Core Performance Measures.--
            (1) In general.--The Administrator of the Health Resources 
        and Services Administration shall conduct an assessment of the 
        current national core performance measures and national core 
        outcome measures utilized under the Maternal and Child Health 
        Block Grant under title V of the Social Security Act (42 U.S.C. 
        701 et seq.) for purposes of expanding such measures to include 
        some of the known risk factors of low birthweight and 
        prematurity, including the percentage of infants born to 
        pregnant women who smoked during pregnancy.
            (2) Report.--Not later than 1 year after the date of 
        enactment of this Act, the Administrator of the Health 
        Resources and Services Administration shall submit to the 
        appropriate committees of Congress a report concerning the 
        results of the evaluation conducted under paragraph (1).

SEC. 4. PUBLIC AND HEALTH CARE PROVIDER EDUCATION AND SUPPORT SERVICES.

    Part P of title III of the Public Health Service Act (42 U.S.C. 
280g et seq.) is amended by adding at the end the following:

``SEC. 399O. PUBLIC AND HEALTH CARE PROVIDER EDUCATION AND SUPPORT 
              SERVICES.

    ``(a) In General.--The Secretary, directly or through the awarding 
of grants to public or private nonprofit entities, shall conduct a 
demonstration project to improve the provision of information on 
prematurity to health professionals and other health care providers and 
the public.
    ``(b) Activities.--Activities to be carried out under the 
demonstration project under subsection (a) shall include the 
establishment of programs--
            ``(1) to provide information and education to health 
        professionals, other health care providers, and the public 
        concerning--
                    ``(A) the signs of preterm labor, updated as new 
                research results become available;
                    ``(B) the screening for and the treating of 
                infections;
                    ``(C) counseling on optimal weight and good 
                nutrition, including folic acid;
                    ``(D) smoking cessation education and counseling; 
                and
                    ``(E) stress management; and
            ``(2) to improve the treatment and outcomes for babies born 
        premature, including the use of evidence-based standards of 
        care by health care professionals for pregnant women at risk of 
        preterm labor or other serious complications and for infants 
        born preterm and at a low birthweight.
    ``(c) Requirement.--Any program or activity funded under this 
section shall be evidence-based.
    ``(d) NICU Family Support Programs.--The Secretary shall conduct, 
through the awarding of grants to public and nonprofit private 
entities, projects to respond to the emotional and informational needs 
of families during the stay of an infant in a neonatal intensive care 
unit, during the transition of the infant to the home, and in the event 
of a newborn death. Activities under such projects may include 
providing books and videos to families that provide information about 
the neonatal intensive care unit experience, and providing direct 
services that provide emotional support within the neonatal intensive 
care unit setting.
    ``(e) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section, such sums as may be necessary 
for each of fiscal years 2004 through 2008.''.

SEC. 5. INTERAGENCY COORDINATING COUNCIL ON PREMATURITY AND LOW 
              BIRTHWEIGHT.

    (a) Purpose.--It is the purpose of this section to stimulate 
multidisciplinary research, scientific exchange, and collaboration 
among the agencies of the Department of Health and Human Services and 
to assist the Department in targeting efforts to achieve the greatest 
advances toward the goal of reducing prematurity and low birthweight.
    (b) Establishment.--The Secretary of Health and Human Services 
shall establish an Interagency Coordinating Council on Prematurity and 
Low Birthweight (referred to in this section as the Council) to carry 
out the purpose of this section.
    (c) Composition.--The Council shall be composed of members to be 
appointed by the Secretary, including representatives of--
            (1) the agencies of the Department of Health and Human 
        Services; and
            (2) voluntary health care organizations, including 
        grassroots advocacy organizations, providers of specialty 
        obstetrical and pediatric care, and researcher organizations.
    (d) Activities.--The Council shall--
            (1) annually report to the Secretary of Health and Human 
        Services on current Departmental activities relating to 
        prematurity and low birthweight;
            (2) plan and hold a conference on prematurity and low 
        birthweight under the sponsorship of the Surgeon General;
            (3) establish a consensus research plan for the Department 
        of Health and Human Services on prematurity and low 
        birthweight;
            (4) report to the Secretary of Health and Human Services 
        and the appropriate committees of Congress on recommendations 
        derived from the conference held under paragraph (2) and on the 
        status of Departmental research activities concerning 
        prematurity and low birthweight;
            (5) carry out other activities determined appropriate by 
        the Secretary of Health and Human Services; and
            (6) oversee the coordination of the implementation of this 
        Act.

SEC. 6. AUTHORIZATION OF APPROPRIATIONS.

    There are authorized to be appropriated to carry out this Act, such 
sums as may be necessary for each of fiscal years 2004 through 2008.

Summary: Prematurity Research Expansion and Education for Mothers who deliver Infants Early Act or the PREEMIE Act - Amends the Public Health Service Act to require both the National Institutes of Health (NIH) and the Centers for Disease Control (CDC) to expand and coordinate research relating to preterm labor and delivery and infant mortality.

Establishes within NIH two networks: a Maternal-Fetal Medicine Units Network and a Neonatal Research Unit Network.

Requires the Director of the CDC to study and report on the relationship between prematurity, birth defects, and developmental disabilities as well as review the Pregnancy Risk Assessment Monitoring Survey.

Requires the Director of NIH to contract with the Institute of Medicine of the National Academy of Sciences for a study on the health and economic consequences of preterm birth.

Directs the Administrator of the Health Resources and Services Administration to assess the current national core performance and outcome measures under the Maternal and Child Health Block Grant with the goal of expanding them to include known risk factors of low birthweight and prematurity such as smoking by pregnant women.

Requires the Secretary of Health and Human Services to make grants for a demonstration project to improve the provision of information on prematurity to health professionals and other health care providers and the public.

Funds grants for projects to support the informational and emotional needs of families during the stay of an infant in a neonatal intensive care unit (nicu).

Establishes an Interagency Coordinating Council on Prematurity and Low Birthweight.