Friends of NICHD Coalition Testimony

Testimony on behalf of the FRIENDS OF NICHD COALITION

Regarding the Fiscal Year 2004 Appropriation for the
National Institute of Child Health and Human Development
before the
United States House of Representatives
Committee on Appropriations
Subcommittee on Labor, Health and Human Services and Education
The Honorable Ralph Regula, Chair
May 14, 2003

Presented by
Karen Studwell, Co-Chair
Jo Merrill, Co-Chair
The Friends of NICHD Coalition

c/o American Psychological Association
750 First Street, NE
Washington, DC 20002

Mr. Chairman and Members of the Subcommittee:

The Friends of the National Institute of Child Health and Human Development (NICHD), a coalition of nearly 100 organizations, is pleased to provide testimony to support the extraordinary work of the NICHD. This coalition is now in its 17th year and is comprised of organizations representing scientists, health professionals, and advocates for the health and welfare of children, adults, families, and people with disabilities. Pursuant to clause 2(g)4 of House Rule XI, the Coalition does not receive any federal funds.

The Coalition would like to thank the Subcommittee for sustaining the bipartisan commitment to doubling the federal investment in the National Institutes of Health over the past five years, and for continuing to support NIH's mission while faced with economic uncertainty. While the magnitude of this investment should not be understated, the myriad advances in health care and medical knowledge derived from this investment in scientific inquiry will bring us even greater returns on this investment and will certainly contribute to the improved health of future generations. To ensure that progress is sustained, the Coalition supports a FY 2004 appropriation of $30 billion for the NIH.

The Coalition also has particular interest in the important work conducted by the National Institute of Child Health and Human Development (NICHD). We believe that the most profound measure of our national strength lies in the health of our children, and the well-being of our families. Since its inception in 1963, NICHD has devoted its resources toward the goal of ensuring that every individual is born healthy and wanted, that women suffer no adverse consequences of the reproductive process, and that all children have the opportunity for a healthy and productive life unhampered by disease or disability. No other NIH Institute directly addresses the broad array of intertwined scientific issues addressed by NICHD every day.

Sustained public investment in NICHD provides a foundation of scientific knowledge about physical, intellectual, social, and emotional development that has profoundly improved public health and reduced human suffering. For FY 2004, the Friends of NICHD support an appropriation of $1.32 billion for the Institute. The Friends of NICHD believe that this public investment is poised to produce new insights into human development and solutions to health problems for the global community, our nation, and the families that live in your town.

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Recent Research Advances

In the past year alone, NICHD has made great strides in addressing its research mission and has added impressive achievements to its incredible record of progress over the past 40 years

Improving Infant Health: NICHD supports extensive research and public awareness campaigns in an effort to reduce infant mortality rates. In 1994, NICHD launched the national Back to Sleep campaign to promote placing babies on their backs to sleep. This campaign, designed to reduce SIDS, has been immensely successful - the rate of SIDS has dropped from more than 5,000 to under 3,000 infant deaths per year since the campaign began. However, the SIDS rate in African American infants is two times higher than in Caucasian infants. To address this problem, NICHD, in collaboration with the National Black Child Development Institute and several other organizations, has expanded the Back to Sleep campaign by developing a Resource Kit for Reducing the Risk of Sudden Infant Death Syndrome (SIDS) in African American Communities. Additional research released just this month, found that placing infants to sleep on their backs not only reduces their risk of Sudden Infant Death Syndrome, but also appears to reduce the risk for fever, stuffy nose, and ear infections.

Mental Retardation and Developmental Disabilities: The Mental Retardation Developmental Disabilities Research Centers are a national resource established by Congress in 1963 to serve as "centers of excellence" for research in mental retardation and developmental disabilities. Today, they are the world's largest concentration of scientific expertise in the fields of intellectual and developmental disabilities. Federal investment in the MRDD Centers has had a huge payoff over the last three decades. Today, many disorders that cause intellectual disabilities can be prevented or treated to improve developmental outcomes. Examples include discovering the gene for Rett Syndrome, and identifying PKU which, left untreated, leads to mental retardation. The MRDD Centers work in the areas of brain growth and development, brain imaging technologies, brain chemistry, neurotoxins, genetics, virus and bacterial infections, language and communication, early identification and intervention and problem behaviors.

Unraveling Genetic Basis of Autism: Working in collaboration with European researchers, NICHD investigators have identified regions of four chromosomes that appear to be linked with the disorder. This knowledge builds further on the scientific progress made in recent years on autism and autism-related disorders. In the past several years, NICHD funded investigators discovered genes for Rett Syndrome and Fragile X Syndrome, two autism-related disorders. These advances add to the growing body of knowledge about the genetic origins of the autism spectrum disorders. NICHD and four other NIH institutes initiated the STAART Centers Program (Studies to Advance Autism Research and Treatment). These Centers will constitute a cohesive program, operating under an NIH cooperative agreement. The primary goal of this initiative is to establish several research centers, each of which will bring together expertise, infrastructure and resources focused on major questions about autism. The research issues to be addressed will include causes, diagnosis, early detection, prevention, and treatment, with approaches such as developmental neurobiology, genetics, and psychopharmacology being represented.

Reading Research: NICHD continues to build on its portfolio of research into how children learn to read English. Researchers from Yale University demonstrated a physical basis of why some children have difficulty reading. Using the advanced functional magnetic resonance imaging (fMRI) technology, the researchers identified neural pathways in the brain that are activated when reading successfully and discovered that those pathways are disrupted for children with dyslexia or other reading impairments. Children who do not receive services to teach them how to overcome reading impairments can carry these deficits into adulthood.

Prevention Research: Parental involvement in the lives of their children is thought to have many positive effects on child and adolescent behavior. According to research funded by NICHD, teens with friends that engaged in problem behaviors, such as drinking, smoking, cheating on tests, lying to parents, or bullying other students, were more likely to smoke if their parents were relatively less involved in their lives than if their parents were more involved. As most people begin smoking in their teen years, it is particularly important to look at prevention efforts designed for children before they pick up the habit.

Women's Health: Several NICHD initiatives produced significant research findings in the past year that affect women's health.

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NICHD's Women's CARE study, funded jointly with the National Cancer Institute, found no association between the use of oral contraceptives during the reproductive years and the risk of breast cancer, even for those woman with a family history of breast cancer. Approximately 80% percent of women born after 1945 have used oral contraceptives at some point in their lives.

NICHD researchers in Florida used microarray analysis to identify 145 genes that are involved in the development and growth of uterine fibroids- a condition that affects up to 70 percent of all reproductive age women and can lead to infertility. African American women are at even greater risk for developing uterine fibroids, with just under 25 percent of African American women undergoing hysterectomies as a result of complications from fibroids.

NICHD has created a urogynecology program to look into pelvic floor disorders. They have implemented a three-pronged research portfolio and terminology workshop to uniformly investigate, diagnose and treat pelvic floor disorders, including urinary incontinence and pelvic organ prolapse. Increased funding, specifically in the NICHD pelvic floor disorder clinical trial intervention program, will enable the Institute to further improve the quality of life for women faced with this embarrassing condition, much of which occurs as a consequence of childbirth.

Advances in Understanding Infertility: NICHD is the primary institute engaged in studying the various factors of reproductive health. By funding research into both female and male infertility, NICHD research has led to significant advances in our knowledge of the determinants of infertility and assisted reproductive treatments that enable infertile couples to have children.

Maternal-Fetal Medicine: NICHD's Maternal-Fetal Medicine Network (MFMU) affords its physician-researchers and scientists the opportunity to conduct large prospective clinical trials to address issues of concern to high-risk women and their babies such as preterm birth, the leading cause of perinatal death. Research by the MFMU has helped American women and their babies in two ways, first by finding the best courses of treatment and prevention for high-risk pregnancies, and second, by studies that have identified ineffective and expensive treatments that do not work, thus allowing physicians to concentrate on using those that do, i.e. "evidence-based medicine."

Recently, the MFMU announced the results of the "Progesterone Trial," a clinical research study that showed that treatment with progesterone, a hormone produced by the human placenta, could substantially reduce the incidence of preterm birth in high-risk pregnancies. This important study took 8 years from the initial development stage through completion, and its potential long-term benefit to women, in terms of pregnancy outcomes and reducing the health costs associated with preterm births, is immense.

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Men's Health: NICHD's reproductive health portfolio includes studies involving male fertility and reproductive health. In FY03, NICHD research found that men who undergo vasectomies are no more likely to develop prostate cancer later in life than those who did not have the procedure. Prostate cancer is currently the second leading form of cancer among men in the United States.

Although this is an impressive record of accomplishment that has made significant contributions to the well-being of our children and families, much remains to be done.

The Challenges of the Future

National Children's Study: In the Children's Health Act of 2000, NICHD was charged with leading a national longitudinal cohort study of environmental influences on the health and development of children. Recommended by the President's Task Force on Environmental Health Risks and Safety Risks to Children, the NCS is a prospective, longitudinal study of pre- and post-natal growth and development. The NCS is planning to enroll 100,000 children in the study to determine causal factors between exposures and later development of diseases, behavioral disorders, and developmental disorders. For the NCS, the environment is defined broadly to include the physical, chemical, social and behavioral influences that affect child development. Planning for this comprehensive project is underway, but resources are needed in order to ensure that the study can go forward as planned and is not delayed.

Pediatric Research Initiative: This is designed to address gaps in knowledge related to child health. For example, research is needed to determine the risks for pregnant women and their unborn children when mothers require medication to manage diseases such as epilepsy, diabetes, or depression. More research is needed on effectiveness and side effects of pharmaceuticals and other medical interventions on children to take into account their developing biological systems. Full support for this initiative will answer these important questions.

Maternal Mortality: Given the risks of pregnancy to both mother and child, continued research on maternal mortality and pregnancy-related conditions is needed. The United States is 20th out of 49 industrialized countries in maternal mortality. Further, there has been no decline in pregnancy-related deaths in over 20 years, even though as a nation we know more about the importance of prenatal care than ever before. NICHD needs sufficient resources to explore the risks of pregnancy and the use of various technologic interventions on laboring women that may increase the risk of certain complications for the mother and infant.

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. Researchers will soon be able to identify target genes, environmental factors, genetic susceptibilities, and interactions between a gene and its environment. 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.

Child Development: Child development involves some of the most complex and important questions facing behavioral and social science researchers. NICHD currently funds behavioral studies that are critical to ensuring the health of our nation's children and adolescents. In addition, research has shown us that many diseases and problems of adulthood are rooted in childhood behaviors. Understanding the interplay among behavior, social and physical environment, and biology is central to discovering ways to prevent behavior-based health problems ranging from fetal alcohol syndrome to teen pregnancy to AIDS to violence. However, little is known about the pathways by which these difficulties develop.

More work is needed to address child health behaviors such as diet, exercise, and stress management and the connections such behaviors may have to adult outcomes. Next to tobacco use, diet represents the area in which prevention efforts have the greatest impact in reducing the socioeconomic and societal burdens of disease. Research efforts need to be focused on factors that predict adult disease so that effective and appropriate interventions can be developed earlier in the life cycle.

Other Disorders: Other disorders that affect normal development need further study as well. Thousands of children and adolescents nationwide suffer from musculoskeletal disorders and deformities, such as osteogenesis imperfecta, many of which have devastating effects in terms of mortality and disability. More research into genetic therapies, animal models, drug treatment and rehabilitation techniques is necessary to truly understand their genesis and treatment.

Spina Bifida is the leading permanently disabling birth defect in the United States. Through research we have learned that Spina Bifida is highly preventable through proper nutrition, including appropriate folic acid consumption. However, too many pregnancies are still affected each year by this birth defect. NICHD cosponsored the Spina Bifida Research Conference in May 2003. Additional resources would allow NICHD to expand its research efforts in the prevention and treatment of Spina Bifida and associated secondary conditions, and follow up on the conference findings and recommendations.

Reading: Much has been learned about helping English speaking children learn to read. Emphasis in research is shifting to reading readiness in order to prepare pre-school children for educational experiences. Additionally, with the growing immigrant school population, research is needed to address the needs of English as a Second Language students. NICHD supports training and research in language development and second language acquisition, written language development, and particular problems associated with language development among bilingual and multilingual children. NICHD plans to extend these investigations of learning to additional subject matter, such as mathematics.

Urogynecologic program: Additional resources would enable the Pelvic Floor Disorder Network to excel in the quality and integrity of clinical and basic scientific research in the field of urogynecology. More needs to be done with basic and translational research in order to create better foundations for clinical care.

Conclusion

It is true that many challenges remain. However, the potential contributions of NICHD- funded research to the lives of countless individuals are limited only by the resources available for carrying out its vital mission. This is why the Friends of NICHD ask you to provide an appropriation of $1.32 billion to the Institute. Our nation and the world will continue to benefit from your promise to improving health and scientific advancement long after the doubling effort is over.

Thank you, Mr. Chairman, and the Subcommittee, for your support for the National Institute of Child Health and Human Development, and thank you for the opportunity to share these comments.

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