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

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 1982 and 2002 (from 9.4 percent to 11.9 percent). In 2002, more than 480,000 babies were born prematurely in the United States. (2)Preterm birth accounts for 24 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 $15,000,000,000 in 2002. 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 is 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.

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:

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 2006 through 2010.

(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).

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:

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 2006 through 2010.

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.

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 2006 through 2010.