The 3 million volunteers and 1400 staff members of the March of Dimes appreciate the opportunity to submit the Foundation’s federal funding recommendations for fiscal year 2005. 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.

The volunteers and staff of the March of Dimes are deeply concerned that for the first time since 1958, the infant mortality rate increased in 2002. Increases in deaths due to premature birth, birth defects, and maternal complications during pregnancy are the top reasons for this increase.  In our judgment, the modest funding increases recommended below would have an immediate and positive impact on this disturbing trend.


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), bringing total federal support to just over $30 billion. A sustained investment in medical research is vital to discovering the interventions needed to prevent and treat diseases and conditions. Because of the profound impact on women and children of the work supported by the National Institute of Child Health and Human Development, funding for this Institute is of particular interest to the March of Dimes.


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 resources, NICHD could expand research in several areas that are crucial to improving 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.

According to the National Center for Health Statistics, in 2002, more than 480,000 babies were born prematurely in the United States – 1 in 8 births.  Since 1981, the preterm birth rate has increased nearly 29%. Premature birth accounts for 23 percent of deaths in the first month of life. Those babies that survive are more likely than full-term infants to face serious multiple health problems including cerebral palsy, mental retardation, chronic lung disease, and vision and hearing loss. Preterm labor can happen to any pregnant woman and the causes of nearly half of all preterm births are unknown. An analysis of Agency for Healthcare Research and Quality data conducted by the March of Dimes Perinatal Data Center estimated that the total national hospital bill for premature babies was $13.6 billion in 2001.  With overall hospital charges increasing rapidly – 13% in 2001 – the financial burden of prematurity is expected to worsen until we know how to prevent preterm births.

The March of Dimes recommends a 10% increase for NICHD in FY2005 and an increase of at least $50 million over the next five years to boost prematurity-related research. This increase should be devoted to a comprehensive biomedical research program to study preterm delivery etiology, prevention and treatment regimens.


Centers for Disease Control and Prevention (CDC)

Division of Reproductive Health

The National Center for Chronic Disease Prevention and Health Promotion, Division of Reproductive Health works to promote optimal reproductive and infant health, but does not have the resources it requires to study the growing problem of preterm birth.  Therefore, the March of Dimes recommends a $20 million increase in FY2005 to expand research related to preterm birth. The growing problem of preterm birth requires an expanded, comprehensive prevention research agenda to identify the causes, risk factors and ways to prevent preterm birth.  In particular, two specific programs should receive additional funding: (1) the Pregnancy Risk Assessment Monitoring System and (2) epidemiological research.

The Pregnancy Risk Assessment Monitoring System (PRAMS) is a state-specific, population based surveillance system designed to identify and monitor maternal behaviors and experiences before, during, and after pregnancy. Currently, CDC supports cooperative agreements with 31 states that allow PRAMS to cover about 60% of all U.S. births.  Data collected through PRAMS is used by researchers and policy makers to increase understanding of adverse pregnancy outcomes, to develop and modify maternal and child health programs, and to incorporate the most up to date research findings into standards of practice.  The March of Dimes recommends an increase of $5 million to expand PRAMS so that CDC can develop national estimates on behavioral as well as demographic risk factors for preterm birth. 

Epidemiological research conducted at CDC is vital to reducing the incidence of preterm labor and delivery.  The March of Dimes recommends an increase of $15 million to expand research on the prevention of preterm delivery for women at risk, focusing especially on factors contributing to higher rates of preterm delivery in African-American women.   Increasing CDC’s activities related to preterm birth will improve early detection of women at risk for preterm labor and lead to new interventions for those at greatest risk.


National Center on Birth Defects and Developmental Disabilities

According to CDC, 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. Of the four million babies born each year in the United States, approximately 150,000 are born with one or more serious birth defects. 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. The causes of about 70% of all birth defects are still unknown.

The National Center on Birth Defects and Developmental Disabilities (NCBDDD) works to prevent birth defects for which causes have already been identified and conducts research on those defects for which causes have not yet been found.  The March of Dimes urges members of the Subcommittee to increase funding for the Center to $160 million in FY 2005 (includes the transfer of Hereditary Blood Disorders Division).  This modest increase will provide the resources necessary to expand prevention activities where causes are known, and to accelerate the pace of research where causes have not as yet been identified.   An increase of $15.9 million in funding for prevention, surveillance, and research activities is vital to making progress in the fight against birth defects. 


1. Prevention: Folic Acid Education Campaign

The NCBDDD is conducting a national public and health professions education campaign designed to increase the number of women taking folic acid daily. According to CDC, 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 consume 400 micrograms of folic acid daily, beginning before pregnancy.  Fortification of the grain supply together with health provider and consumer education has resulted in a 32% decline in the rates of spina bifida.  However, the growing popularity of low-carbohydrate diets has caused an increasing number of women to reduce or eliminate their daily intake of bread and other grains. A 2003 Gallup Organization survey conducted for the March of Dimes found that only 32 percent of women in the United States between the ages of 18 and 45 take a multivitamin containing folic acid on a daily basis, up only four percent since 1995. When asked what would make them more likely to take a multivitamin containing folic acid on a daily basis, 33 percent of women said they would be more likely to do so on the advice of their doctor or health care provider. Therefore, it is critical that CDC step up its campaign to educate every woman of childbearing age about the importance of taking a daily multivitamin containing folic acid. 

To enable CDC to educate more women of child bearing age and their health providers about the importance of folic acid, the March of Dimes recommends an appropriation of at least $5 million in FY2005 for the Folic Acid Education Campaign.


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 public health network. CDC is currently supporting cooperative agreements with 28 states, each funded at an annual level of between $100,000 and $200,000 for each of three years. The March of Dimes encourages Subcommittee Members to add $3.4 million (a total of $7.5 million) to state-based birth defects surveillance activities.  As you may know, resources have not been adequate to fund all states seeking assistance.  Additional funding is needed to support creation of programs where none exist and improvement of programs already receiving support.


3. Research: Regional Centers for Birth Defects Research and Prevention 

NCBDDD currently funds 10 regional Centers for Birth Defects Research and Prevention (each Center receives 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 obtain data and identify cases for inclusion in the National Birth Defects Prevention Study, the largest case-control study of birth defects ever conducted. The centers study the effectiveness of primary prevention of birth defects, the teratogenicity of various drugs, the environmental causes of birth defects and the genetic factors pertaining to susceptibility to environmental causes of birth defects. For example in response to a scientific study showing a possible association between the drug loratadine, also sold under the brand name Claritin®, and the occurrence of the birth defect hypospadias the National Birth Defects Prevention Study conducted a study that showed no association. This information will be useful to any woman who takes loratadine and becomes pregnant.  The March of Dimes encourages the Subcommittee to add $10 million (for a total of $17.3 million in funding) to support the important and promising work of the regional centers.  


Additional CDC Programs

National Immunization Program

Immunizations are critical to the health and well-being of children. CDC’s National Immunization Program provides grants to 64 state, local, and territorial public health agencies 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 move the nation closer to the goal of vaccinating at least 90% of children and adults. To account for vaccine price increases, introduction of new vaccines, and to facilitate implementation of recent Institute of Medicine recommendations, the March of Dimes recommends an overall increase of $180 million in FY2005 for the National Immunization Program.


Polio Eradication

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 shift its focus to 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 2005 global polio eradication activities. With polio epidemics now confined to only 6 countries (Nigeria, India, Pakistan, Niger, Egypt and Afghanistan), it is important that the U.S. government maintain its commitment to completion of the worldwide eradication initiative. 


National Center for Health Statistics

The Foundation also supports the vital work of the National Center for Health Statistics (NCHS) which provides information essential for research and programmatic initiatives. NCHS' surveys to assess the health status of American’s care are critical to many programs and initiatives.  For example, the National Vital Statistics System is a major source of information on utilization of health services, preterm births, low birthweight as well as outcomes including birth defects and infant mortality.  Increased funding would allow CDC to modernize this system using web-based technology that would facilitate rapid compilation of data and improvement in the accuracy and completeness of information obtained from health professionals and facilities. This information is needed to track trends in birth outcomes and to support birth defects registries. Additional resources would also enable CDC to continue the National Survey of Family Growth which provides essential information on factors affecting birth outcomes.


Health Resources and Services Administration (HRSA)

Newborn Screening

Newborn screening is a public health activity used to identify genetic, metabolic, hormonal and/or functional conditions in newborns.  Many 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 some genetic birth defects, the number and quality of these tests varies 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 9 metabolic disorders as well as hearing deficiencies.

In FY2004, the Congress provided first-time funding for implementation of Title XXVI of the Children’s Health Act of 2000.  This program is designed to strengthen state 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. The March of Dimes proposes an appropriation of $25 million to support HRSA’s work with states to expand the heritable disorders (newborn screening) program authorized through Title XXVI. 


Maternal and Child Health Block Grant

Title V of the Social Security Act, 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 other needed health services. The March of Dimes recommends fully funding the block grant at the authorized level of $850 million and notes that in order to hold states harmless an appropriation of $807 million is required. Additional funding would enable states to expand critical services such as prenatal and infancy home visitation programs, strategy that helps improve birth outcomes.  According to the Maternal and Child Health Bureau, 900,000 children with special health care needs use MCH services.  These children would also benefit as increased resources would enable states to raise spending limits for home visits respite care, physical and occupational therapy, durable medical equipment, and other support services.


Consolidated Health Centers

Consolidated (Community) Health Centers are an important source of obstetric and pediatric care for more than 13 million individuals, 40% of whom are uninsured.  The Foundation recommends new funding sufficient to increase the number of centers and to improve the scope of perinatal services provided.  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 to increase the number of patients served annually to more than 16 million. 

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.

MARCH OF DIMES
FY2005 FEDERAL FUNDING PRIORITIES
(Dollars in Millions)