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Testimony on behalf of Mr. Chairman and Members of the Committee, I am pleased to be able to testify on behalf of the Friends of NICHD, a coalition of nearly 100 organizations comprised of scientists, health professionals and advocates that support the extraordinary work of the National Institute of Child Health and Human Development (NICHD). Pursuant to clause 2(g)4 of House Rule XI, neither I nor the coalition receive any federal funds. The most profound measure of our national strength lies in the health of our children, the well-being of our families, and the safety of our daily lives. NICHD was created with this vision in mind--a vision that goes beyond treating and preventing disease and disability to encompass the hope that every individual has the opportunity to achieve his or her full potential. Created in 1963 in response to a national need to address a range of disorders inherent in human development, NICHD's early focus was understanding the biological and environmental conditions that help foster healthy physical, emotional, and intellectual growth. Over the years, its mission has grown to include research about the evolving relationships between social behavior, human reproduction and larger population trends, and ways to improve the health and care of persons with disabilities. No other NIH Institute directly addresses the broad array of intertwined scientific issues that NICHD does every day. Sustained public investment in NICHD provides a foundation of scientific knowledge about physical, intellectual, and emotional development that has profoundly improved public health and reduced human suffering. The Friends of NICHD are excited to report that we believe this investment is poised to produce even bigger contributions. Why?
The Friends of NICHD Coalition believes that if our nation is to capitalize on these emerging discoveries and address urgent public health needs, Congress and the American people must increase our commitment to NICHD. For FY 2001, the Friends of NICHD support an appropriation of $1,064,800 million. Fresh Progress The Friends of NICHD Coalition wish to extend sincere appreciation to the U.S. Congress whose leadership, guidance and support provided for a steady increase for NICHD last year. Thanks to this increase, NICHD has continued to foster scientific advances and to get new discoveries out to those who need the information. Let me provide a few examples. This year, NICHD researchers discovered the gene for Rett Syndrome, a heartbreaking disorder which gradually robs healthy infant girls of their language skills, mental functioning, and ability to interact with others. The finding has immediate implications for both the development of a test to diagnose the disorder before birth, and new strategies to prevent the debilitating effects of the disease. Just a few weeks ago, I heard from one of our coalition members, Ms. Kathy Hunter, whose daughter is afflicted with Rett Syndrome. She described the emotional impact of the discovery-how it released the blame she felt, and how thrilled she was that other parents might not have to experience what she did. Another discovery may allow NICHD to add hypothyroidism to its long list of correctable maternal conditions that, when untreated, damage a child's intellectual capabilities. Children born to mothers with untreated hypothyroidism during pregnancy score lower on IQ tests than children of healthy mothers. However, children whose mothers were being treated for the condition scored almost the same as children born to healthy mothers. These findings suggest that screening women for hypothyroidism before or early in pregnancy may provide a way to prevent related mental retardation. A protocol is in preparation to test this possibility in more than a dozen ob-gyn departments within the national NICHD Maternal-Fetal Medicine Network. Another NICHD funded network, the Mental Retardation Developmental Disability Research Centers, pursues research that will lead to understanding mental retardation and other developmental disabilities including autism, Duchenne Muscular Dystrophy, Fragile X syndrome, and Myotonic Dystrophy. You may recall various emotional media accounts during the past year describing how a three-year-old boy with autism improved dramatically within a week of being administered a drug called secretin, during a medical procedure. As a result of this publicity and the understandable desperation of parents eager to help their autistic children, prices for secretin skyrocketed. No precise statistics exist, but many experts believe thousands of children have received the hormone. Unfortunately, no scientific evidence existed to help these parents make their decision about the safety and effectiveness of this treatment. NICHD quickly responded by funding a number of clinical studies to determine the possible use of secretin as a treatment for autism. In fact NICHD has made pediatric drug research a priority by building thirteen Pediatric Pharmacology Research Unit Networks, to address the dearth of information about the effects of medications on children. These sites are playing an increasingly important role in the health of children by quickly and safely obtaining the clinical data required for approved pediatric use of drugs. When NICHD finds information that can drastically improve public health, it has shown the ability to get the word out. In the five years since the Institute launched the national Back to Sleep campaign, which urges caretakers to place infants on their backs to sleep, deaths due to Sudden Infant Death Syndrome (SIDS) have dropped by 38 percent. Despite this significant success, challenges remain. Both the SIDS rate and the rate of stomach sleeping among African-Americans infants are more than double those rates for white infants. To address this marked disparity, the NICHD joined hands with leaders from a number of national African-American organizations to develop and implement strategies for reducing SIDS in African-Americans. Their goal: eliminate the racial disparity in infant back sleeping position within three years. NICHD is addressing similar racial and ethnic health disparities by setting up specialized centers for research in reproductive medicine at minority-led institutions. The hope: to increase the number of trained minority investigators in areas with higher minority populations. To address this and related challenges, NICHD has established a Reproductive Medicine-Gynecology Program, funding grants on endometriosis, polycystic ovarian disease, vulvodynia and other conditions. Furthermore, to address urinary incontinence, a condition affecting 13 million Americans, NICHD is issuing requests for research applications and supporting focused workshops. Although NICHD is taking a proactive role in searching for more knowledge about these conditions, more funding is needed to address gynecological issues affecting women throughout their life-span. A Long Record of Achievement What is more amazing than one year of results is the sum total of progress enabled by NICHD over the past 37 years. NICHD was formed a year before I was born. If I can be so bold, I would like to use myself and extended family as small examples that I hope will vividly demonstrate this progress, and what it has meant to the average person. Thanks to work done by NICHD, I was able to have a baby when I was ready to have a baby. For more than three decades, NICHD has been a world leader in research and development of new contraceptive methods, and related efforts to improve the efficacy and safety of these methods. Today, the Institute is pioneering the development and testing of microbicidal preparations that would protect women against both unwanted pregnancy and STDs, including HIV/AIDS. This work is more important than ever in a society in which five of the top ten most frequently reported diseases in the United States in 1995 were STDs. Approximately 12 million new cases of STDs occur annually. STDs cause serious life-threatening complications that cost our nation $17 billion annually. NICHD must have adequate funding to continue to make its critical contributions in this area. Early last year, I took the challenging leap to motherhood when I gave birth to a healthy eight-pound baby boy. My husband and I learned of this exciting news using a home pregnancy test with diagnostic technology developed by NICHD. When my mother gave birth to her first born in the late 1950s, he lived only hours before succumbing to Respiratory Distress Syndrome (RDS), a breathing problem which, in most cases, killed premature infants with underdeveloped lungs. Thankfully, my nephew, also born with RDS, had a 95 percent chance of living because of a treatment discovered by NICHD research. Now, at age two he is thriving. Since my mother gave birth to me, infant mortality in the U.S. has declined by 70 percent. Most of this decline can be linked directly to NICHD research advances that have improved infant health by improving survival of infants born prematurely or with birth defects, and, more recently, prevented HIV/AIDS transmission from mothers to their babies. The most promising avenue to further reduce infant mortality is to reduce the number of low-birth weight infants, many of which are the result of preterm labor. My friend Abbey is a pregnant woman facing the prospects of a low-birth weight baby. She is in preterm labor in a Washington, DC, hospital now. Premature labor occurs in 7-10 percent of all births, accounting for more than 75 percent of all perinatal death. NICHD is making a significant research investment to improve our understanding of the underlying causes and mechanisms of premature labor. Thanks to this investment, scientists have made significant progress in efforts to identify markers for preterm births, including demonstrating that women with elevated concentrations of alpha fetoprotein (AFP) in their blood during the second trimester may be at risk for stillbirth, low infant birth weight, or preterm birth. This is particularly important for African American women, who suffer from a higher incidence of preterm or low birth weight births. With support from the NIH Office of Research on Minority Health, NICHD's special initiative to reduce infant mortality in minority populations in the District of Columbia has been underway for seven years; the infant mortality rate in D.C. has dropped substantially during that period. Fortunately Abbey's chances of delaying full-blown labor are already being bolstered by NICHD-developed treatment advances to reduce premature contractions. But NICHD must have adequate funding in order continue to make its contributions in this area. More funding is needed to truly understand the complex and interwoven processes involved in labor. What are the prospects for healthy growth of Abbey's son after his birth? Not too long ago, infectious diseases were the leading cause of parental concern for their children's health. We have come a long, long way in this area. It is unlikely that her child or mine will suffer from a number of what used to be considered routine childhood diseases thanks to a number of preventative vaccines developed with the help of NICHD. For example, NICHD is responsible for developing a vaccine for Hemophilus influenzae type b (Hib). Brain damage caused by Hib used to be the leading cause of acquired mental retardation. Today, Hib-caused meningitis has virtually disappeared. This accomplishment is one of the most important direct contributions to public health ever made by NIH. Eliminating this disease saves more than $400 million each year in the United States alone. Preventing disease is only one way that NICHD has contributed to the future good health of our children. NICHD has also made profound advances in our understanding of the ways that child rearing environments influence children's development from infancy through middle childhood. Like many other parents with children in day care, I have been heartened by reports that quality out-of-home child care does not appear to damage children's cognitive development, or their social and emotional skills. These reports stem from findings within NICHD's Study of Early Child Care and Youth Development, the largest and most comprehensive longitudinal study of child care ever conducted in the United States. So far, this research takes us only to age three. NICHD-funded researchers we will soon have information about the long-term effects of child care, by examining these children into the fifth grade. Because of this research, my husband and I are more aware of the biological and environmental factors that will improve our ability to decide what's best for our son during his early years. NICHD is helping us prepare for his teenage years too. In the areas of behavioral research, the Institute is identifying some of the major influences on the health and health behavior choices of young people. The highest rate of injuries occurs in the teen years when multiple risk behaviors are combined with emerging independence and experimentation. Since 1994, the Institute has supported The National Longitudinal Study of Adolescent Health (Add Health), building a critical knowledge base about the way peers, families, schools and neighborhoods can influence positive health outcomes, as well as negative outcomes, such as violent behavior, smoking, drinking, illegal drug use, and sexual behavior. This information is critical to our society where injuries and accidents cause more fatalities in children and young adults than all diseases combined, and where violence is the third leading cause of death. To develop and assess therapies tailored to children needing trauma treatment, NICHD is now planning a multi-disciplinary, collaborative program through the Institute's National Center for Medical Rehabilitation Research. The Add Health study highlights one of the unique aspects of NICHD's mission-a population-level perspective to serve as a complement to research programs that focus at the individual and cellular levels, and as a bridge to the needs of public policy related to health and well-being. This basic and applied research is critical to understanding factors that may lead to disparate paths and health outcomes, and is key to understanding, if not eliminating health disparities. It is certainly possible that in the future we might find out that our son has difficulty learning to read. More than 15 million American children - 30 percent of the population - fail to develop adequate reading skills. Poor and minorities children are at the greatest risk. NICHD scientists have developed successful, research-based interventions that can markedly reduce the rate of reading failure, and are exploring ways to further improve reading skills in populations of culturally and linguistically diverse students. The first results of an NICHD intervention project to improve reading skills with regular classroom teachers in Washington, DC, public schools shows great promise: reading scores in schools that have historically been at the 10th to 15th percentile have improved to better than the 50th percentile. Prospects For An Even Brighter Future Following input from the scientific community, advocacy groups, and the public, NICHD recently published its plan to explore new scientific frontiers in the publication "From Cells to Selves: NICHD Charting a Future Course." The potential impact of these future efforts will be profound. With further resources, NICHD can fully prepare to capitalize on the revolutionary detail of the Human Genome Project and extraordinary advances in molecular and developmental biology to attack the leading cause of infant mortality in this country, birth defects. Approximately 150,000 babies in the United Sates are born each year with significant birth defects. The emotional costs to families are incalculable. Related hardships cost the U.S. economy nearly $6 billion. New funds will help NICHD apply new technologies toward improved knowledge of the brain. The Institute will be able to expand its leadership role in addressing significant developmental health problems by unraveling the scientific mysteries of how children learn, think, plan, feel emotions, and make decisions. Amazingly little scientific information exists to tell us exactly which aspects of behavioral experience are essential to human development, or how experience and behavior relate to the biological functioning of the developing organism. Researchers will soon be able to identify and target genes, environmental factors, genetic susceptibilities, and interactions between a gene and its environment. Cutting edge research suggests that the nine short months of life in the womb can strongly determine the health we enjoy 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. In Summary Mr. Chairman, I hope that I have been able to illustrate three basic facts:
Yes, challenges remain, both in research and in understanding. But I ask you to consider the universal nature of the work that NICHD fosters: Every couple hoping to become parents, every couple wanting to avoid an unintended pregnancy, every woman dealing with the biological consequences of her reproductive ability, and every infant facing an uncertain future because of preventable disease or disorder....these everyday people have better health information and more healthy options thanks to the unique work of NICHD. This is why the Friends of NICHD ask you to go beyond the Administration's request to fund the Institute at a level of $1,064,800 million in FY 2001. Thank you for this opportunity to present our view of this valuable research. |
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