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House appropriations testimony

Testimony on Behalf of March of Dimes Foundation
Committee on Appropriations - Subcommittee on Labor, Health and Human Services and Education

The 3 million volunteers and 1,400 staff members of the March of Dimes Foundation appreciate the opportunity to submit the Foundation’s federal funding recommendations for Fiscal Year 2011 (FY11). The March of Dimes is a national voluntary health agency founded in 1938 by President Franklin D. Roosevelt to support research and services related to polio. Today, the Foundation works to improve the health of women, infants and children by preventing birth defects, premature birth and infant mortality through research, community services, education and advocacy. The March of Dimes is a unique partnership of scientists, clinicians, parents, members of the business community and other volunteers affiliated with 51 chapters and 213 divisions in every state, the District of Columbia and Puerto Rico. Additionally, in 1998, March of Dimes established its Global Programs to extend its mission overseas through partnerships with countries to deliver interventions directed at reducing birth defects and preterm birth.

The March of Dimes recommends the following funding levels for programs and initiatives that are essential investments in the future of health of the nation's children.

Preterm birth
According to a 2009 report from the National Center for Health Statistics (NCHS), the primary reason for the higher infant mortality rate in the United States compared to European nations is the greater percentage of preterm births--12.4 percent in U.S. compared to 6.3 percent in Sweden. This suggests that preterm birth prevention is central to lowering the U.S. infant mortality rate. Moreover, the Institute of Medicine estimated that preterm birth cost the United States more than $26 billion in 2005, with costs continuing to climb each year.

In June of 2008, the U.S. Surgeon General sponsored a conference to develop a research agenda to address the costly and serious problem of preterm birth. More than 200 of the country's foremost researchers, representing a diversity of backgrounds and expertise, met for two days and created an action plan of needed steps. Within these steps, there are several cross-cutting themes including recommendations to enhance biomedical and epidemiological research and to strengthen our nation's vital statistics program. The March of Dimes funding requests enumerated below are based on the recommendations of the Surgeon General’s Conference.

National Institutes of Health - Office of the Director
The March of Dimes commends members of the Committee for supporting the National Children's Study (NCS) by including $193.8 million in the FY10 Consolidated Appropriations Act. For FY11, the Foundation supports the President's funding recommendation and urges the Subcommittee to maintain its commitment to this vital study by providing $194.4 million. Currently in the pilot phase, the NCS is tracking the more than 150 children born to study participants. The data from this important effort will inform the work of scientists in universities and research organizations across the nation and around the world, helping them identify precursors to disease and to develop new strategies for prevention and treatment. The first data generated by the NCS will provide information concerning disorders of birth and infancy including preterm birth and its health consequences. The Foundation remains committed to supporting a well designed NCS that promotes research of the very highest quality.

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
The March of Dimes recommends a funding increase of at least 12.5 percent for NICHD in FY11. This increase in funding will enable NICHD to maintain the momentum and investments made with support provided through the Recovery Act. It will also enable the Institute to expand its support for preterm birth-related research and to initiate establishment of a network of integrated transdisciplinary research centers as recommended by the Institute of Medicine and the experts who participated in the Surgeon General's Conference. The causes of preterm birth are multi-factorial and necessitate a collaborative approach integrating many disciplines. These new centers would serve as a national resource for investigators to design and to share new research approaches and strategies to comprehensively address the problems of preterm birth.

Centers for Disease Control and Prevention - Preterm Birth
The National Center for Chronic Disease Prevention and Health Promotion, Division of Reproductive Health works to promote optimal reproductive and infant health. In 2009, CDC created a robust research agenda to prevent preterm birth by improving national and state data to track preterm births; developing, implementing and evaluating methods for prevention; understanding the problem of late preterm birth; and conducting etiologic and epidemiologic studies of early preterm birth. For FY11, the March of Dimes recommends a $6 million increase in the preterm birth line to strengthen national data systems and to expand research on very early as well as late preterm births as authorized by the PREEMIE Act (P.L. 109-450).

Centers for Disease Control and Prevention - National Center for Health Statistics
The National Center for Health Statistics (NCHS) national vital statistics program collects birth data that is used to monitor the nation’s health status, set priorities and evaluate health programs. It is imperative that data collected by NCHS is comprehensive and timely. Currently, only 75 percent of states and territories use the 2003 birth certificate format and only 65 percent have adopted the 2003 death certificate. Consistent with the President’s Budget request, the Foundation recommends allocating $11 million specifically to the National Vital Statistics System to help support modernization of the state and territorial vital statistics infrastructure without undermining the scope and quality of data collected nationally.

Health Resources and Services Administration - Healthy Start
The Healthy Start Initiative is a collection of community-based projects focused on reducing infant mortality, low birthweight and racial disparities in perinatal outcomes. Communities with Healthy Start programs have seen significant improvements in health outcomes; therefore the March of Dimes recommends a funding level for these projects of $120 million in FY11.

Birth defects
An estimated 120,000 infants in the U.S. are born with birth defects each year. Genetic or environmental factors, or a combination, can cause a birth defect; however, the causes of 70 percent of birth defects remain unknown. Investing additional federal resources in research to unveil the causes and prevent, or reduce, the incidence of birth defects is sorely needed.

CDC National Center on Birth Defects and Developmental Disabilities (NCBDDD)
The NCBDDD conducts programs to protect and improve the health of children by preventing birth defects and developmental disabilities and by promoting optimal development and wellness among children with disabilities. For FY11, the March of Dimes requests an overall funding level of $163 million, a $20 million increase over FY10, for NCBDDD. Within that increase, we encourage the committee to allocate $5 million for support of birth defects research and surveillance and an additional $2 million for folic acid education. This is a sound public health investment that will promote wellness and prevention, reduce health disparities, support the creation of new educational materials for consumers and their families and will enable CDC to better facilitate transition to adulthood for children with disabilities.

Sustaining the investment in the National Birth Defects Prevention Study—the largest case-controlled study of birth defects ever conducted—is needed to support genetic analysis of the samples already obtained. In 2009, CDC educated health care providers through the dissemination of more than 10 reports which resulted from this Study. Among the topics were the risk factors for birth defects such as maternal smoking, obesity and antidepressant use during pregnancy.

NCBDDD also supports state-based birth defects tracking systems and programs to prevent and treat affected children. Surveillance forms the backbone of a vital, functional and responsive public health network. Due to current the current fiscal crises being faced by many states, funding for some of these systems is in jeopardy. Increased investment from the federal government is necessary to ensure continued investment in birth defects surveillance programs.

Finally, NCBDDD is conducting a national education campaign aimed at increasing the number of women consuming appropriate amounts of folic acid. CDC estimates that up to 70 percent of neural tube defects could be prevented if all women of childbearing age consume 400 micrograms of folic acid daily. To achieve the full prevention potential of folic acid, CDC’s national public and health professions education campaign must be expanded.

Newborn screening
Newborn screening is a vital public health activity used to identify and treat genetic, metabolic, hormonal and functional disorders in newborns. Screening detects conditions in newborns that, if left untreated, can cause disability, mental retardation, serious illness or even death. Across the nation, state and local governments are experiencing significant budget shortfalls; due to this fiscal pressure, newborn screening programs are threatened by funding cuts. While the ramifications--such as discontinuing screening for certain conditions or postponing the purchase of necessary technology--can vary by state, any funding cut in this essential program puts infants at risk for permanent disability or even death. An additional $5 million for HRSA's heritable disorders program, as authorized by the Newborn Screening Saves Lives Act (P.L. 110-204), is necessary to increase support for state efforts to upgrade existing programs, to acquire state-of-the-art technology and to increase capacity to reach and educate health professionals and parents on newborn screening programs and follow-up services.

Agency for Health Research and Quality (AHRQ)
AHRQ supports research to improve health care quality, reduce costs and broaden access to essential health services. The Foundation recommends $611 million for AHRQ to continue its important work and support priority initiatives, including the development and dissemination of maternal and pediatric quality measures and comparative effectiveness research. Moreover, with the historic enactment of health reform, AHRQ's research is needed more than ever to build the evidence-base to improve health and health care coverage.

Health Resources and Services Administration - Maternal and Child Health Block Grant
Title V of the Social Security Act, the Maternal and Child Health (MCH) Block Grant, supports a growing number of community-based programs (e.g., home visiting, respite care for children with special health care needs and supplementary services for pregnant women and children enrolled in Medicaid and the State Children’s Health Insurance Program), but federal support has not kept pace with increased enrollment and demand for services. The March of Dimes recommends funding the MCH Block Grant at the level of $730 million.

CDC National Immunization Program
Infants are particularly vulnerable to infectious diseases, which is why it is critical to protect them through immunization. In 2008, the national estimated immunization coverage among children 19 - 35 months of age was 76.1 percent. The CDC National Immunization Program supports states, communities and territorial public health agencies through grants to reduce the incidence of disability and death resulting from vaccine-preventable diseases. The March of Dimes recommends $865.6 million for FY11 and urges the subcommittee to continue its longstanding policy of strong support for federal vaccine programs.

CDC Polio Eradication
Since its creation as an organization dedicated to research and services related to polio, the March of Dimes has been committed to the eradication of this disabling disease. For FY11, the Foundation recommends a funding level of $102 million for the CDC global polio eradication program. Level with FY10, this funding would allow CDC to continue its supplementary immunization activities in the remaining endemic and high-risk countries in Africa and Asia and to quickly respond in order to interrupt polio transmission in these regions.

Thank you for the opportunity to testify on the federally supported programs of highest priority to the March of Dimes. The Foundation's volunteers and staff in every state, the District of Columbia and Puerto Rico look forward to working with Members of the Subcommittee to secure the resources needed to improve the health of the nation's mothers, infants and children.

Frequently Asked Questions

What federal agencies are involved in premature birth research?

Multiple federal agencies support prematurity-related research but among the most engaged are the Eunice Kennedy Shriver National Institute of Child Health and Human Development at the National Institutes of Health and Maternal and Infant Health Research within the Centers for Disease Control and Prevention.

Where can I learn more about the National Children's Study?

The March of Dimes has advocated for the study since its inception, realizing the critical information that will come from systematically examining the effects of environmental and other influences on the health and development of 100,000 children across the United States.

Why is the data collected from birth certificates important?

Information that is collected on birth certificates is vital to understand trends, to determine the infant mortality rate, and to guide decisions for intervention programs and for research. State laws require birth certificates to be completed for all births, and federal law mandates national collection and publication of births and other vital statistics data by the National Center for Health Statistics, which is part of the Centers for Disease Control and Prevention. Learn more on the NCHS website and understand the strict privacy standards covering individuals.

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