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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.
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