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Testimony on Behalf of March of Dimes Before the House Committee on Appropriations
Committee on Appropriations, Subcommittee on Labor, Health and Human Services and Education
Presented by: Nancy A. Myers, R.N., M.Ed., CPHQ
March of Dimes Ohio Chapter Executive Committee
May 7, 2002
Good afternoon, Mr. Chairman and members of the Subcommittee. I am Nancy Myers, a volunteer member of the Executive Committee of the March of Dimes Ohio Chapter. I am pleased to have the opportunity to testify this afternoon on behalf of 1600 staff and over 3 million volunteers, and share with you the Foundation’s federal funding priorities for fiscal year 2003. 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 55 chapters and 263 divisions in every state, the District of Columbia and Puerto Rico.
Mr. Chairman, the statistics on birth defects and developmental disabilities are very disturbing and illustrate a serious health problem facing our nation. 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 and responsible for about 30% of all pediatric hospital admissions.
The lifetime economic costs of caring for infants born in a single year with a serious birth defect have been estimated at $8 billion. To be more specific, approximately 12 out of 1,000 school children have some discernable level of mental retardation; it has been estimated that as many as 2 in 1,000 children under age 15 may have an autism spectrum disorder; and as many as 2 in every 1,000 children have a moderate to severe hearing impairment in both ears. By adequate funding of the programs described below, Congress can take a significant step towards improving the health of mothers, infants and children.
Centers for Disease Control and Prevention (CDC)
The National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the CDC began operation a year ago with the mission 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 this Subcommittee to increase funding for the Center to $115 million in FY 2003. This modest increase of $25 million will provide the resources necessary to expand the following activities supported by the Center.
Regional Centers for Birth Defects Research and Prevention
NCBDDD currently funds regional “Centers for Birth Defects Research and Prevention” in Arkansas, California, Iowa, Massachusetts, New Jersey, New York, and Texas. Each center receives approximately $900,000 per year. The March of Dimes recommends adding $6 million $12.3 million total funding) to the budget for these regional centers. This increase will allow these centers to expand and intensify their groundbreaking research on genetic and environmental causes of birth defects. These seven centers and the eighth site at the CDC participate in the National Birth Defects Prevention Study, one of the largest studies ever conducted on the causes of birth defects. Each center has been collecting information about "cases" that have a major birth defect and "controls" which are infants with no birth defects. The mothers of both "case" and "control" infants complete an extensive telephone interview about their pregnancy and medical history, occupational and environmental exposures, lifestyle, diet, and medication use. These centers are also collecting cells from cheek swabs which are used to study genetic factors. Now, with 5 years worth of information collected, these data are being used in studies that will help identify the causes of birth defects. For example, the current studies focus on 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 make people susceptible to birth defects, the behavioral causes of birth defects, and the costs associated with birth defects. This is exciting, leading edge research that merits additional support.
State Cooperative Agreements to Improve Birth Defects Tracking
NCBDDD also funds the development, implementation, and expansion of state birth defects tracking systems, programs to prevent birth defects, and activities to improve access to health services for children with birth defects. CDC is now funding 28 cooperative agreements ranging in size from $100,000 and $200,000 a year for each of three years. The March of Dimes encourages the Subcommittee to add $3.4 million ($7.5 million total funding) to state-based birth defects surveillance activities. Mr. Chairman, as you may be aware, resources have not been adequate to fund all the states seeking CDC assistance, including your own state of Ohio. These additional resources are needed to help all the states seeking CDC assistance and to increase the level of assistance to states already receiving support.
Folic Acid Education Campaign
Tracking and research are needed to develop and implement programs to prevent birth defects and developmental disabilities. Currently, NCBDDD is conducting a national 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). NTDs are birth defects of the brain and spinal cord, including anencephaly and spina bifida. CDC estimates that the annual medical care and surgical costs for persons with spina bifida in the United States exceed $200 million, and that up to 70% of NTDs could be prevented if all women of childbearing age consume 400 micrograms of folic acid daily, beginning before pregnancy. As a result of fortification of the grain supply with folic acid and increased educational outreach programs,
CDC reports the rates of NTDs are down 19% since 1996. Increased funding will allow CDC to expand its folic acid campaign 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 2003 to promote this lifesaving intervention.
Additional CDC Programs
National Immunization Program
Immunizations are critical to the health and well-being of our children. Although there are many reasons for the current vaccine shortage, insufficient federal resources should not be one of them. The March of Dimes urges the Subcommitttee to continue its longstanding policy of ensuring that federal vaccine programs are adequately funded.
One example of the cost effectiveness of immunizations is the measles, mumps, rubella (MMR) vaccine. According to CDC, the United States saves more than $13 for every dollar invested in the MMR vaccine – a savings of about $4 billion a year. Wide-spread vaccination of children helps prevent the spread of rubella to others, especially pregnant women, which can cause serious birth defects that require ongoing medical care. 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 encourages the Subcommittee to approve a FY 2003 appropriation of $696 million for the National Immunization Program. Increasing the funding by $65 million dollars over FY 2002 ($20 million increase for operations/infrastructure grants awards to states and $45 million increase for the purchase of vaccines) would help ensure that those in need of immunizations receive them and 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 2003 global polio eradication activities. If approved, the additional $4 million would help cover the costs associated with a 33% increase in the price of the polio vaccine in 2001 that has reduced the amount of doses that CDC has been able to procure.
National Institutes of Health (NIH)
In keeping with this Committee’s five-year goal of doubling funding for the National Institutes of Health, the March of Dimes supports the President’s proposed $27.3 billion appropriation for NIH in FY 2003. However, the Foundation is concerned with some allocations recommended by the Administration and suggests the following adjustments.
- National Institute for Child Health and Human Development (NICHD)
The mission of NICHD is closely aligned with that of the March of Dimes. The Foundation recommends an increase of 16% for NICHD, bringing total funding for this Institute to $1.296 billion. With this increase in funding, NICHD could expand research in several areas that are crucial to the health of mothers and children. Additional funds would permit expansion of research into the causes of birth defects, and also the causes of prematurity. Increased funding would also enable NICHD to accelerate the timetable for implementing a much-needed analysis of environmental influences on child health and development that will be conducted as part of the National Children’s Study authorized by the Children’s Health Act of 2000.
- National Human Genome Research Institute
Finally, the March of Dimes supports the important work of the National Human Genome Research Institute. The Human Genome Project has identified the sequence of DNA comprising human genes, but this is just the beginning; now, researchers are working to identify every gene, learn their functions, learn how they contribute to disease and determine what can be done to prevent and treat disease more effectively. Obviously, with the enormity of the task ahead, additional funding would expedite the remaining work associated with this proposal. The Foundation supports the President’s requested funding level for the National Human Genome Research Institute and urges the committee’s support.
Health Resources and Services Administration (HRSA)
- 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 targeting 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.
- 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. As the Committee members know, such disorders, if left untreated, can cause death, disability, mental retardation and other serious problems. 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, a core set of 10 screening tests 1.
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.
In addition, the March of Dimes is deeply concerned that the President’s FY 2003 budget proposal eliminates funding for the Universal Newborn Hearing Screening program at HRSA. There is clear evidence that children who are identified early and receive intensive early intervention perform as much as 20-40 percentile points higher than children who do not receive such intervention on school related measures (reading, arithmetic, vocabulary, articulation, percent of the child's communication understood by non-family members, social adjustment and behavior) than children who do not receive such early intervention. This program is funded at a level of $10 million this year. The Foundation recommends a $1 million increase to $11 million for FY 2003.
- Consolidated (Community) 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 nearly 11 million individuals, 4.5 million of whom are uninsured. The Foundation would like to be on record in support of additional funding sufficient to increase both the number of Centers and to improve the scope of perinatal services offered. Additional funds would be consistent with the President’s five-year plan to create new or 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)
The March of Dimes is deeply concerned by the President’s proposed $48 million cut in funding for the 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. If approved, this decrease in funding would endanger the completion of many vitally important studies on children’s health. 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. The March of Dimes supports a FY2003 budget allocation of $390 million for the Agency for Healthcare Research and Quality, a $90 million increase over FY2002 and a $138 million increase above the President's budget request. The research conducted by AHRQ is more relevant and more needed than ever.
Thank you for the opportunity to testify on the programs of highest priority to the March of Dimes. A comprehensive list of the Foundation’s recommendations for additional federal health program funding is provided in the summary page. The staff and volunteers of the March of Dimes look forward to working with you, Mr. Chairman, and members of the Subcommittee to improve the health of mothers, infants and children.
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