Testimony on behalf of the Friends of the National Institute of Child Health and Human Development

Regarding the Fiscal Year 2007 Appropriation for the National Institute of Child Health and Human Development

Submitted to the
Committee on Appropriations
Subcommittee on Labor, Health and Human Services and Education
The Honorable Ralph Regula, Chair

Submitted by
Mary Ann McCabe, Ph.D., 2006 Chair
Friends of NICHD
c/o Society for Research in Child Development
750 First Street NE
Washington D.C. 20002-4242
202/336-5951

The Friends of the National Institute of Child Health and Human Development (NICHD) is a coalition of more than 100 organizations, representing scientists, health professionals, and advocates for the health of infants, children, families, and people with disabilities. We are pleased to submit testimony to support the extraordinary work of the NICHD.

First, the Coalition would like to thank the Subcommittee for its previous support of the federal investment in the National Institutes of Health (NIH). To ensure that progress is sustained, the Coalition joins the Ad Hoc Group for Medical Research in supporting an FY 2007 appropriation of $29.75 billion for the NIH, a 5% increase over FY 2006.

Since its creation in 1963, NICHD has made great strides in meeting the objectives of its broad biomedical and behavioral research mission. The NICHD research mission and portfolio, which is the broadest of all institutes and centers, includes reducing difficulties with pregnancy, reducing birth defects and infant mortality, and improving knowledge about learning disabilities.

Although the NICHD has made significant contributions to the well-being of our children, women, and families, much remains to be done. The Institute is already funding grant awards at dramatically reduced levels in the current fiscal year, and under the proposed budget, this situation will continue to worsen in FY 2007. With adequate resources, NICHD could build upon the promising initiatives described in this testimony and restore adequate funding to its research projects. For FY 2007, the Friends of NICHD support an appropriation of $1.328 billion for NICHD, a 5% increase over FY 2006.

Women's Health

Several NICHD initiatives have recently produced significant research findings affecting women's health. For example, researchers have expanded on key advances regarding the origin of fibroid tumors-the most common benign tumors of the uterus and leading cause of hysterectomy in the United States. Additional resources would enable the Institute to accelerate research into fibroid tumors and other conditions, such as ovarian cancer and infertility.

Maternal-Fetal Medicine

The NICHD network of Maternal-Fetal Medicine Units (MFMU), working at 14 sites across the U.S., affords its physician-researchers the opportunity to conduct large prospective clinical trials. Results of a successful clinical research study within the MFMU showed that treatment with progesterone could reduce recurrent preterm birth in high-risk women. This is one of the first advances in this area, despite extensive efforts over decades.

Premature birth remains a significant public health problem, affecting one in eight babies born in this country and is the leading cause of newborn death. With sufficient funds, NICHD plans to implement a major new research initiative focusing on genomics and proteomics that could accelerate knowledge into the mechanisms responsible for premature birth, thereby further reducing the incidence of preterm birth.

HIV/AIDS

NICHD research is testing and refining effective interventions to slow HIV progression in women, treat infected infants, and reduce mother-to-child transmission. NICHD collaborative research efforts on interventions, such as drug therapy, have reduced maternal transmission of HIV from 27% to 1.2% worldwide.

Newborn Screening

NICHD is leading federal research efforts to expand newborn metabolic and genetic screening by developing a multiplexed screening prototype that can be used by states and commercial laboratories in screening newborns for a broad range of potentially fatal or disabling conditions. Enhanced newborn screening would permit more timely clinical and preventive interventions for currently treatable genetic disorders and enable scientists to study rare disorders and develop treatments.

Infant Mortality

NICHD continues to support the Back to Sleep campaign to reduce SIDS (Sudden Infant Death Syndrome). Since the campaign began in 1994, the rate of SIDS has dropped nearly 50 percent. However, the SIDS rate in African American infants is two times higher than in Caucasian infants, and the NICHD has worked with several organizations to develop a resource kit to address this disparity. The Institute would like to pursue a similar program for American Indian communities.

Autism and Autism Spectrum Disorders

Working in collaboration with European researchers, NICHD investigators have identified regions of four chromosomes that appear to be linked with autism. NICHD and four other NIH institutes initiated the STAART Centers Program (Studies to Advance Autism Research and Treatment). The research issues addressed include causes, diagnosis, early detection, prevention, and treatment, with approaches stemming from developmental neurobiology, genetics, and psychopharmacology.

Birth Defects

With further resources, NICHD can prepare to capitalize on the revolutionary detail of the Human Genome Project and extraordinary advances in molecular and developmental biology to attack such problems as birth defects. Cutting edge research suggests that the prenatal period can strongly determine the health throughout our lives. Research on "fetal programming" could have profound implications for addressing birth defects, as well as adult illnesses such as diabetes, obesity, cardiovascular disease and breast cancer. NICHD can be instrumental in advancing basic understanding of biological and adaptive mechanisms that operate in the womb and early childhood.

Mental Retardation and Developmental Disabilities

Mental Retardation and Developmental Disabilities Research Centers (MRDDRC). The MRDDRC are a national resource established by Congress in 1963 to serve as "centers of excellence" for research in mental retardation and developmental disabilities. They are the world's largest concentration of scientific expertise in the fields of intellectual and developmental disabilities. Many disorders are being studied by the MRDDRC such as Fragile X syndrome, Rett syndrome, and autism. New genes have been identified in the past five years that are leading to the eventual prevention of the disability, as well as to improved developmental outcomes, for children born with cognitive disorders.

Child Development

Child development involves some of the most complex and important questions facing behavioral and social science and pediatric researchers. NICHD has been actively involved in testing off-patent drugs for safety in children, as mandated in the Best Pharmaceuticals Act for Children. They are now also developing improved databases for development, including developmental norms for new medical technologies, such as fMRI and bone density tests.

NICHD currently funds behavioral studies that are critical to ensuring the health of our nation's children and adolescents. For example, NICHD has recently funded work related to the safety of teen driving. NICHD also funds critical research in the area of child abuse and neglect. Research has clearly shown that many diseases and problems of adulthood, ranging from obesity to violence to AIDS, are rooted in childhood behaviors. The National Longitudinal Study of Adolescent Health has shown that by the time they reach early adulthood (age 19), a large proportion of American youth have begun the poor practices contributing to three leading causes of preventable death in the U.S.: smoking, poor diet and physical inactivity, and alcohol abuse.

Obesity

NICHD is integrally involved in research into the origins of obesity in childhood. Next to tobacco use, diet and exercise represent the areas in which prevention efforts will have the greatest impact in reducing the socioeconomic and societal burdens of disease through halting the obesity epidemic. More developmental research needs to be focused on understanding the interplay among behavioral, social and physical environment, and biological factors that lead to obesity so that effective and appropriate interventions can be developed earlier in the life cycle.

Reading

NICHD continues to build on its impressive portfolio of research into how children learn to read. Children who do not overcome reading impairments carry these deficits into adulthood and the workforce. Reading research at NICHD is extending to children for whom English is a second language, to other subject areas (e.g., math), and to implications for teacher preparation. NICHD is also currently funding new initiatives to develop better measures of the social and emotional bases of school readiness, which will inform our early education programs.

National Children's Study

The Children's Health Act of 2000 charged NICHD with leading the National Children's Study (NCS) - a national longitudinal study of environmental influences on the health and development of children. This study will follow 100,000 children from before birth to early adulthood providing one of the richest information resources available for answering questions related to children's health and development. Although NICHD and a small consortium of others have funded the initial stages of planning, developing the study protocol, and selecting the study sites, this study is beyond the scope of any single agency. To fully implement the study in FY 2007, the NCS needs an increase of $57 million over the FY 2006 funding level.

Conclusion

To enable NICHD to fulfill the promise that these activities and advances represent, the Friends of NICHD wholeheartedly support providing the Institute an appropriation of $1.328 billion in FY 2007. Thank you.