Testimony on Behalf of the Friends of NICHD Coalition

Regarding the Fiscal Year 2003 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 2, 2002

Presented by 

The Friends of NICHD Coalition 
c/o American Psychological Association
750 First Street, NE
Washington, DC 20002
Karen Studwell, Co-Chair

Society for Maternal-Fetal Medicine
2025 M Street, NW, Suite 800
Washington, DC 20036


Chairman and Members of the Subcommittee:

I am pleased to provide testimony on behalf of the Friends of the National Institute of Child Health and Human Development (NICHD), a coalition of nearly 100 organizations that support the extraordinary work of NICHD.  Our coalition is now in its 16th 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. While scientific progress does not happen smoothly, your contributions to science today will certainly contribute to the improved health of future generations. To ensure that progress is sustained, the Coalition supports a FY 2003 appropriation of $27.3 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, 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.  Since its inception in 1963, NICHD has devoted its resources to 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. 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. 

 Recent advances in basic biological science, including work on the human genome, have given NICHD scientists the means necessary to understand fetal development in the womb, including the gestational period when many organ systems form.  NICHD researchers have begun to apply our new genetic knowledge to investigations of turning genes “on and off” at the right times to reduce birth defects and inherited disorders.  Knowledge of the brain’s structure, function, and relationship to other biological systems is exploding.  Coupled with emerging technologies, this knowledge has created a new frontier with enormous potential for improved understanding of the processes involved in learning, cognitive ability, emotions, and social skills.  Additionally, new technologies, some being developed by NICHD scientists, are on the horizon that will enable NICHD researchers to predict, essentially at or before birth, the diseases to which an individual is biologically and environmentally susceptible, and how to avert them.

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 the commitment to NICHD.  For FY 2003, the Friends of NICHD support an appropriation of $1.284 billion for the Institute.

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 39 years.  I am proud to be able to share with you some of the recent advances through which NICHD has contributed to the health and well-being of our nation and our world.    

New Vaccine for Staph Infections: NICHD researchers have found a vaccine to prevent the common Staphylococcus aureus infection, an infection in the bloodstream that is a major cause of infection and death among hospital patients. Staph infections are commonly contracted in hospitals by those with compromised immune systems, such as individuals undergoing hemodialysis for end stage kidney disease. Recently, staph strains have been resistant to treatment by antibiotics or traditional treatments. Continued clinical trials will be conducted to improve the immune systems of vaccinated patients so that they will be able recognize nearly 100 percent of S. aureus types found in blood infections.

Discovering Vaccine for Typhoid Fever: Researchers funded by NICHD discovered a new vaccine for typhoid fever, a disease that infects 16 million people worldwide each year, killing 600,000. Typhoid vaccines currently on the market are ineffective for children under 5 years of age, and the typhoid bacteria have grown resistant to the antibiotics used to treat them.  The newly discovered vaccine has the highest effective rate at 91.5%, but it also is the first vaccine to protect young children against typhoid fever. And, in contrast to other typhoid vaccines, it is virtually free of side effects.

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 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.

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.   

Maternal-Fetal Medicine Research: In this country, 30% of women experience major medical complication at some point during their pregnancy. We hope this alarming number will decrease through additional research focused on pregnancy related complications, such as prevention of pre-term labor, the role of genetics in pregnancy outcomes, and the causes of ethnic and racial differences in maternal mortality, where African Americans are 4 times more likely to die of pregnancy related causes than whites.

Maternal-Fetal medicine specialists are obstetrician/gynecologists who undergo an additional 2-3 years of training in order to provide care and consultation in complicated pregnancies and for women at high-risk. A major research body for maternal-fetal medicine research is the NICHD Maternal-Fetal Medicine Units (MFMU) Network.The MFMU Network was established in 1986 to respond to the need for well-designed clinical trials in this specialty field. With 14 participating centers, including two sites in Ohio, the MFMU Network is the only vehicle of its kind that allows researchers to study a sufficiently large number of patients so that concrete recommendations can be made to introduce new scientific discoveries. Increased funding is needed, both for individual investigators studying pregnancy and its complications, as well as to ensure the long-term stability of the MFMU Network.  

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. NICHD-funded researchers recently developed a more reliable means for determining the likelihood of a man’s fertility. The study, based on the most comprehensive analysis of its kind, was conducted by researchers in the NICHD-sponsored National Cooperative Reproductive Medicine Network, and will provide a valuable tool for specialists treating couples with unexplained infertility, allowing them to decide whether it would be more beneficial to focus fertility treatments on the man or the woman.

Research on Pelvic Floor Disorders: Recently, 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. 

Reducing Infant Mortality: 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 public education 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.  Research shows that African American infants are more often placed on their stomachs to sleep, a major risk factor for SIDS.  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. 

Although this impressive record of accomplishment has made significant contributions to the wellbeing of our children and families, much remains to be done.  New prospects await exploration but need to be seized now, when the science is poised to make considerable progress, so that these potential breakthroughs do not become missed opportunities.

The Challenges of the Future

NICHD continues to focus on implementing several congressional priorities enumerated in the Child Health Act of 2000.  NICHD was charged with leading a national longitudinal cohort study of environmental influences on the health and development of children, The National Children’s Study.  Recommended by the President’s Task Force on Environmental Health Risks and Safety Risks to Children, this is a prospective, longitudinal study of pre- and post-natal growth and development seeking to uncover the contributions of the conditions and milieu in which a child grows and develops. Planning for this comprehensive project is underway for the study that will follow 100,000 children from pre-natal to early adulthood.  The National Children’s Study has incredible potential, but will require a substantial commitment on the part of the many partners to sustain this effort, the first of its kind and the first longitudinal study on children of this scope.

 he Child Health Act of 2000 also included a new Pediatric Research Initiative at NIH to address gaps in knowledge related to child health.  Dr. Kirschstein has assigned the coordinating role for this initiative to NICHD. 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.  

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.

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 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.   

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 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.

 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.

It is true that many challenges remain.  However, the potential contributions of the Institute to the lives of countless individuals is 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 $1.284 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.

On behalf of the Friends of NICHD, I 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.