What follows is a transcript of testimony given by Dr. Jennifer L. Howse, President of the March of Dimes Birth Defects Foundation, before the House Appropriations Subcommittee on Labor, Health and Human Services and Education May 8, 2003.

Good morning, Mr. Chairman and members of the Subcommittee.  I am Dr. Jennifer L. Howse, President of the March of Dimes. I am pleased to have the opportunity to testify this morning on behalf of the 1500 staff and over 3 million volunteers of the March of Dimes, and share with you some of the Foundation’s federal funding priorities for fiscal year 2004.  As you may know, the March of Dimes is a national voluntary health agency founded in 1938 by President Franklin D. Roosevelt to prevent polio.  Today, the Foundation works to improve the health of mothers, infants and children by preventing birth defects and infant mortality through research, community services, education, and advocacy. The March of Dimes is a unique partnership of scientists, clinicians, parents, members of the business community, and other volunteers affiliated with 54 chapters in every state, the District of Columbia and Puerto Rico.


National Institutes of Health 
The March of Dimes joins the larger research community in recommending a 10% increase in funding for the National Institutes of Health (NIH), which would bring total federal support to approximately $30 billion. A sustained investment in medical research is vital to discovering the interventions needed to prevent and treat many diseases and conditions.  Specifically, and of particular interest to the March of Dimes, are the research activities at the National Institute of Child Health and Human Development and the National Human Genome Research Institute because of the profound impact of their work on women of child bearing age, infants and children.

National Institute for Child Health and Human Development
The mission of the National Institute for Child Health and Human Development (NICHD) is closely aligned with that of the March of Dimes.  The Foundation recommends an overall increase in funding of 10% for NICHD.  With this increase in necessary resources, NICHD could expand research in several areas that are crucial to the health of women and children.  Additional funds would permit expansion of research into preterm labor and delivery and into the causes of birth defects, and would enable NICHD to begin implementing the National Children’s Study of environmental and genetic influences on child health and development.

More than 476,000 babies in the United States—nearly 12% of all US babies—were born prematurely in 2001. Preterm labor and delivery is the number one problem in obstetrics today and a major problem in pediatrics. It is the leading cause of neonatal mortality, and 1 in 5 babies born very prematurely have serious physical and mental disabilities that can last a lifetime, such as cerebral palsy, mental retardation, chronic lung disease, and vision and hearing loss. Prematurity is also a growing problem. Between 1981 and 2001, the incidences of preterm births has risen 27%. Rates of preterm birth vary significantly by race and ethnicity. In 2001, rates for blacks were highest among all racial and ethnic subgroups--17.5 percent as compared to 11 percent for whites. In addition to the adverse health effects, preterm birth is a significant financial burden in health care today.  The estimated total charges for hospital stays for infants with any diagnosis of prematurity were $11.9 billion in 2000.

The March of Dimes has played a role in making America's children healthier for 65 years. In January of this year, the Foundation launched a new, multi-year campaign to reduce the incidence of prematurity.  The Campaign involves a five-year, $75 million commitment of private funds to expand research, raise public awareness and educate health professionals as well as women of childbearing age and their families.

As significant as the March of Dimes Campaign will be, the Foundation is a non-profit organization with limited resources.  Success in reducing the incidence of prematurity requires a commitment from the federal government as well.  The March of Dimes recommends increased funding of at least $50 million over the next five years to boost prematurity-related research supported by NICHD. Resources should be devoted to scientific investigation into the underlying causes of preterm delivery, the development of treatments for prevention of prematurity and treatments improving outcomes for infants born preterm.  One area deserving particular emphasis for expansion is the collaborative networks for Maternal-Fetal Medicine Units and Neonatal Research. A recent clinical trial funded by the NICHD Maternal-Fetal Medicine Network reported a promising treatment to prevent preterm births using a derivative of the hormone progesterone. Women who received weekly injections of the compound had a 30 percent reduced incidence of preterm delivery compared to the women who received a placebo. The result is impressive and additional funding is needed for further clinical trials to increase the positive effects of this treatment.

National Human Genome Research Institute
The March of Dimes strongly supports the important work of the National Human Genome Research Institute (NHGRI). The International Human Genome Sequencing Consortium, led in the United States by NHGRI and the Department of Energy, recently announced the successful completion of the Human Genome Project.  Now that the 3 billion DNA letters in the human genome have been sequenced, scientists have begun working to improve our understanding of the role of genetics in human health and disease.  The March of Dimes believes that the enormity of the task ahead and its promise for disease prevention and treatment offers the strongest possible rationale for commitment of necessary resources.  We encourage Members of this Subcommittee to support a 10% increase in funding for NHGRI.    


Centers for Disease Control and Prevention (CDC)

National Center on Birth Defects and Developmental Disabilities
Of the four million babies born each year in the United States, approximately 150,000 are born with one or more serious birth defects.  Birth defects are the leading cause of infant mortality accounting for more than 20% of all infant deaths and are responsible for about 30% of all pediatric hospital admissions. In addition, birth defects are the fifth-leading cause of years of potential life lost and contribute substantially to childhood morbidity and long-term disability. Because the causes of about 70% of all birth defects are unknown, it is not clear what the effects of most genetic and environmental factors have in causing birth defects, developmental disabilities, or other adverse reproductive outcomes. There are also many unresolved questions about how various occupational hazards, dietary factors, medications, and personal behaviors cause or contribute to birth defects. 

The National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the CDC works to improve the health of children and adults by preventing the occurrence of birth defects and developmental disabilities; and promoting health and wellness among children and adults with disabilities.  The March of Dimes urges members of this Subcommittee to increase funding for the Center to $125 million in FY 2004.  This modest increase will provide the resources necessary to expand many of the important activities supported by the Center. Of particular interest to the March of Dimes is the prevention of birth defects for which causes are known and the identification of causes for defects for which causes are not yet understood.  A comprehensive program that includes surveillance, research and prevention activities is being administered by the NCBDDD. A modest increase of $15.9 million in funding for three programs listed below is vital to making progress in the fight against birth defects.

1. Prevention: Folic Acid Education Campaign
   NCBDDD is conducting a national public and health professions education campaign designed to increase the number of women taking folic acid daily. Each year, an estimated 2,500 babies are born with neural tube defects (NTDs), birth defects of the brain and spinal cord, including anencephaly and spina bifida.  CDC estimates that up to 70% of NTDs could be prevented if all women of childbearing age consumed 400 micrograms of folic acid daily, beginning before pregnancy.  The rates of spina bifida declined 31% between 1995 and 1999 due to improved public and health professionals’ understanding of the importance of folic acid and to fortification of the grain supply. With increased funding and in collaboration with the National Spina Bifida Program, this campaign could be expanded to reach more women of childbearing age and their health care providers. The March of Dimes recommends an appropriation of at least $5 million for FY 2004 to promote this lifesaving intervention.
2. Surveillance:  State Cooperative Agreements to Improve Birth Defects Tracking 
   NCBDDD funds state initiatives to develop, implement, and/or expand community-based birth defects tracking systems, programs to prevent birth defects, and activities to improve access to health services for infants and children with birth defects. Surveillance forms the backbone of a vital, functional and responsive public health network. CDC is now supporting cooperative agreements with 28 states, each funded at an annual level of  $100,000 to $200,000 for each of three years. The March of Dimes encourages Subcommittee Members to add $3.4 million ($7.5 million total funding) to state-based birth defects surveillance activities.  As you may know, resources have not been adequate to fund all the states seeking CDC assistance.  Additional funding is needed to help all the states seeking CDC assistance and to improve programs in states already receiving support.
3. Research: Regional Centers for Birth Defects Research and Prevention 
   NCBDDD funds 10 regional Centers for Birth Defects Research and Prevention (each receiving approximately $900,000 per year) to conduct epidemiological research on birth defects. The centers are located in Arkansas, California, Georgia, Iowa, Massachusetts, New Jersey, New York, North Carolina, Texas, and Utah.  These centers identify cases and obtain data for inclusion in the National Birth Defects Prevention Study, the largest case-control study of birth defects ever conducted. The centers also use this data to study the effectiveness of various methods for the primary prevention of birth defects, the teratogenicity of various drugs, the environmental causes of birth defects and the genetic factors that relate to susceptibility to environmental causes of birth defects.  In addition, the data is being used in ongoing work relating to the behavioral causes of birth defects, and to estimate the financial and societal costs associated with birth defects. The March of Dimes encourages this Subcommittee to add $10 million ($16.3 million total funding) to fund these promising areas of research and to support the continued work of all 10 regional centers.

Additional CDC Programs

National Immunization Program
Immunizations are critical to the health and well-being of our children. CDC’s National Immunization Program provides grants to all 50 states to reduce the incidence of disability and death resulting from vaccine preventable diseases. The March of Dimes urges the Subcommitttee to continue its longstanding policy of ensuring that federal vaccine programs are adequately funded to enable us to move toward the national goal of vaccinating 90% of children and adults.

Polio Eradication
As I mentioned earlier, the March of Dimes was founded to find ways of preventing poliomyelitis.  Although success in developing the Salk and Sabin vaccines enabled the Foundation to take on a new set of challenges, we continue to support completing the task of polio eradication worldwide.  Global polio eradication will save lives and reduce unnecessary health-related costs.  The March of Dimes supports a funding level of $106.4 million for CDC’s FY 2004 global polio eradication activities. With only 7 countries now having endemic polio, it is important that the U.S. government maintain its commitment to worldwide eradication of polio.

National Center for Health Statistics
The Foundation also supports the vital work of the National Center for Health Statistics (NCHS) which offers information essential for these research and programmatic initiatives.  NCHS' broad program of surveys to assess health care are critical to many of our efforts.  For example, investment in the National Vital Statistics System, a major source of information on birth outcomes and birth defects, would allow CDC to modernize this system using web-based technology that would provide for rapid compilation of data as well as tools to improve the accuracy and completeness of information obtained from physicians and hospitals. These improvements are needed to better detect trends in birth outcomes and to support birth defects registries. Additional resources would also support expansion of the National Survey of Family Growth to provide essential information on factors that affect birth outcomes.


Health Resources and Services Administration (HRSA)

Newborn Screening
One of the great advances in preventive medicine has been the introduction of newborn screening.  Newborn screening is a public health activity used to identify certain genetic, metabolic, hormonal and/or functional conditions in newborns.  Such disorders, if left untreated, can cause disability, mental retardation, and even death.   Although nearly all babies born in the United States undergo newborn screening tests for genetic birth defects, the number and quality of these tests vary from state to state. The March of Dimes recommends that every baby born in the U.S. receive, at a minimum, screening for a core set of 10 disorders.

The March of Dimes proposes an appropriation of $25 million to support HRSA’s work with states to implement the heritable disorders (newborn screening) program authorized in Title XXVI of the Children’s Health Act of 2000.  This program is designed to strengthen states newborn screening programs; to improve states’ ability to develop, evaluate, and acquire innovative testing technologies; and to establish and improve programs to provide screening, counseling, testing and special services for newborns and children at risk for heritable disorders.

Maternal and Child Health Block Grant
The Maternal and Child Health (MCH) block grant funds community-based services such as home visiting and respite care for children with special health care needs.  MCH complements Medicaid and the State Children’s Health Insurance Program by providing “wrap-around” services and by providing needed health care in otherwise underserved areas.  The March of Dimes recommends fully funding the block grant at the authorized level of $850 million.  Additional funding would enable states to expand prenatal and infancy home visitation programs, a proven prenatal care strategy that helps improve birth outcomes.  The 900,000 children with special health care needs who use MCH services would also benefit as increased resources would enable states to raise spending limits for durable medical equipment, home visiting, respite care, physical and occupational therapy visits, and other supportive health services.

Consolidated Health Centers
The March of Dimes also supports the Consolidated (Community) Health Centers program because these centers are an important source of obstetric and pediatric care for 13 million individuals, nearly 5 million of whom are uninsured.  The Foundation would like to be on record in support of new funding sufficient to increase both the number of centers and to improve the scope of perinatal services offered. Adding funds to this program would be consistent with the President’s five-year plan to create and expand health center sites in 1,200 communities and increase the number of patients served annually to more than 16 million.


Agency for Healthcare Research and Quality (AHRQ)
AHRQ supports research designed to improve the quality of healthcare, reduce its cost, improve patient safety, decrease medical errors, and broaden access to essential health services. Two examples specifically related to the mission of the March of Dimes are a study focusing on racial/ethnic variations in managing prematurity and infant mortality and the development of quality-of-care measurements for high-risk (very low birthweight) infants. In addition, through the Healthcare Cost and Utilization Project National Inpatient Sample of hospital discharges, AHRQ provides timely data to researchers and others seeking information about health care charges. For example, using this database, analysts at the March of Dimes were able to put a price tag on the hospital charges associated with the care of preterm babies. The March of Dimes supports a FY2004 budget allocation of $390 million for the Agency for Healthcare Research and Quality, an increase of $86 million over FY2003. The research conducted under the auspices of AHRQ is more relevant and more needed than ever. 

Thank you for the opportunity to testify on the federally supported programs of highest priority to the March of Dimes. The Foundation’s staff and volunteers look forward to working with Members of the Subcommittee to improve the health of mothers, infants and children.