Committee on Appropriations
Subcommittee on Labor, Health and Human Services and Education

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 2006. 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 52 chapters in every state, the District of Columbia and Puerto Rico.

The volunteers and staff of the March of Dimes are deeply concerned that the funding recommendations and levels in the President’s Budget and congressional Budget Resolutions will not be sufficient to support biomedical research and services needed to improve the health of children and families. For instance, the infant mortality rate increased in 2002 for the first time since 1958. Increases in deaths due to premature birth, birth defects, and maternal complications during pregnancy account for most of the increase. In our judgment, the funding increases recommended below are fully justified and would have an immediate positive impact on this disturbing trend and thereby lead to an overall improvement in the health of the nation’s children.


National Institutes of Health 

The March of Dimes joins the larger research community in recommending a 6% increase in funding for the National Institutes of Health (NIH), bringing total federal support to just over $30 billion. The Administration’s FY06 budget proposal is insufficient to keep up with inflation and certainly will not sustain the necessary investment in medical research. 

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.  According to the National Center for Health Statistics (NCHS), in 2002, more than 480,000 babies were born prematurely in the United States - 1 in 8 births. Premature birth accounts for nearly 24 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. 

The NICHD has made a major commitment to understanding and preventing premature birth but additional funding is desperately needed.  The March of Dimes recommends a 10% increase for NICHD in FY2006 and an increase of at least $100 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.

Last year, the NCHS reported the first increase in the U.S. infant mortality rate since 1958 and 61% of this increase was due to an increase in the birth of premature and low birth weight babies. 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 $15.5 billion in 2002. The financial burden of prematurity is expected to continue to worsen until prevention of preterm births is better understood and clinical interventions are developed. 

The NICHD began a major new initiative involving genomic and proteomic research into the causes of premature birth in an effort to accelerate knowledge in the mechanisms responsible for premature birth. The RFA soliciting proposals for the establishment of a collaborative network for premature birth research was issued in June 2004.  The NICHD received an excellent response to this RFA and had anticipated the start of this initiative in early 2005.  The March of Dimes is very disturbed that the start of this crucial initiative has now been delayed because of insufficient funding. 

Unfortunately, even a 10% increase in funding would not be enough to enable NICHD to begin implementing the National Children’s Study (NCS) of environmental and genetic influences on child health and development. The goal of the NCS is to pinpoint causes and find prevention and treatment strategies for many of today’s childhood diseases and disorders. The planning of the study is largely complete and the study is ready to be piloted.  On November 16, 2004, the Request for Proposals for the first NCS study sites and the data-coordinating center were published.  But beyond the pilot sites, the future of this important study is uncertain without additional funding.  The cost of this study is dwarfed by the $269 billion annual cost of treating the diseases and conditions it is designed to address, including preterm birth, according to NICHD estimates.  If study findings were to result in only a 1% reduction in those costs, the expense of the entire study could be recovered in a single year. The March of Dimes believes it would be shortsighted to put off this study.


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 FY2006 to expand research related to preterm birth. Worsening rates of preterm birth require an expanded, comprehensive prevention research agenda to identify the causes, risk factors, and to find clinical interventions that are effective in preventing preterm labor.  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 29 states and New York City through which PRAMS monitors approximately 62% 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 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 better 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 birth.  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 among African-American women.   Increasing CDC’s activities related to identifying the causes of preterm birth would 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

Created by the Children’s Health Act of 2000 (P.L. 106-310), the National Center on Birth Defects and Developmental Disabilities (NCBDDD) conducts programs to protect and improve the health of children and adults by preventing birth defects and developmental disabilities; promoting optimal child development and health and wellness among children and adults with disabilities. The March of Dimes recommends at least $135 million in FY2006 funding for the NCBDDD.

Of particular interest to the March of Dimes is the NCBDDD’s comprehensive birth defects program that includes surveillance, research and prevention activities. Of the four million babies born each year in the United States, 3% are born with one or more birth defects. Birth defects are the leading cause of infant mortality, accounting for more than 20% of all infant deaths. Children with birth defects who survive often experience lifelong physical and mental disabilities.  In fact, birth defects contribute substantially to the nation’s health care costs.  According to CDC, the medical treatments and supportive services for the 17 most common birth defects exceed $8 billion annually. A modest increase of $6 million in funding for surveillance, research and prevention activities is a vital step to making progress in reducing the incidence of birth defects.

NCBDDD provides funding to states to develop, implement, and/or expand community-based birth defects surveillance systems, programs to prevent birth defects, and activities to improve access to health services for children with birth defects. Surveillance is vitally important for the early detection of new birth defects, for discovering the causes of birth defects and for evaluating the effectiveness of prevention programs. Due to lack of funds, CDC will only fund 15 states in FY 2005, down from 28 states in FY 2004. Additional resources are needed to fund all states seeking CDC assistance and increase assistance to states already receiving funds.

The National Birth Defects Prevention Study is the largest case-control study of birth defects ever conducted.  This CDC-funded study is being carried out by 9 regional Centers for Birth Defects Research and Prevention located in Arkansas, California, Georgia, Iowa, Massachusetts, New York, North Carolina, Texas, and Utah.  These centers obtain data and identify cases for inclusion in the study and conduct epidemiological research on birth defects. With adequate funding, this study has the potential to dramatically increase understanding of the causes of birth defects and is already providing information for improvement of programs to prevent birth defects.  The causes of nearly 70% of birth defects are still unknown.

The centers study possible genetic and environmental causes, the use of certain medications during pregnancy, maternal diet, and vitamin use. This study provides the nation a continuing source of information on potential 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 review that showed no association. This information is useful to physicians as well as women who take loratadine and become pregnant. 

The NCBDDD also is conducting a national public and health professions education campaign designed to increase the number of women taking folic acid. CDC estimates that up to 70% of neural tube defects (NTDs), serious birth defects of the brain and spinal cord including anencephaly and spina bifida, could be prevented if all women of childbearing age consume 400 micrograms of folic acid daily, beginning before pregnancy. Since fortification of U.S. enriched grain products with folic acid, the rate of NTDs in the United States has decreased by 26%.  It is critical that CDC increase its campaign efforts to educate every woman of childbearing age and their providers about the importance of folic acid to further reduce the rates.  Therefore, the March of Dimes recommends an appropriation of at least $4 million in FY06 for the Folic Acid Education Campaign.


Additional CDC Programs

National Immunization Program

If we are to meet the Healthy People 2010 goals of vaccinating 90 percent of children and adults, CDC, states and localities will need sufficient resources to ensure that those in need of immunizations receive them.  Annually, 4 million children should be immunized against 12 preventable diseases before the age of two. Yet, nearly 25% of two-year-olds have not received all of the recommended vaccine doses.  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.  To move the nation closer to the goal of vaccinating at least 90% of children and adults, the March of Dimes urges the Subcommittee to continue its longstanding policy of ensuring that federal vaccine programs are adequately funded. For FY06, the March of Dimes recommends an overall increase of $232 million in order to ensure that the National Immunization Program has the resources it needs to account for vaccine price increases, introduction of new vaccines, and to facilitate implementation of recommendations developed by the Institute of Medicine.


Polio Eradication

April 12, 2005 marks the 50th anniversary of the declaration that the poliovirus vaccine developed by Dr. Jonas Salk was safe and effective.   The March of Dimes, formerly known as the National Foundation for Infantile Paralysis, funded Dr. Salk's groundbreaking work on the polio vaccine.  Although eradication of polio in the United States resulted in a shift in the Foundation’s focus to a new set of challenges pertaining to children’s health, the March of Dimes continues 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 FY06 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 data essential for research and programmatic initiatives. For example, the National Vital Statistics System is a major source of information on the utilization of prenatal care and on adverse birth outcomes such as preterm births, low birthweight, and infant mortality. Increased funding would allow CDC to modernize this system using web-based technology that facilitates rapid compilation of accurate and comprehensive data obtained from health professionals and facilities. This information is needed to track trends in birth outcomes and to support birth defects registries. Data from NCHS’ surveys are also important to identify emerging trends and optimal uses of existing program resources.  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 vital public health activity used to identify genetic, metabolic, hormonal and/or functional conditions in newborns that left untreated can cause disability, mental retardation, and even death.  Although nearly all babies born in the United States are screened 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 29 metabolic disorders including hearing deficiencies.

In FY05, the Congress provided 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.  Unfortunately, funding for Title XXVI activities was obtained by diverting a portion of the SPRANS section of the Maternal and Child Health Block Grant which the Administration proposes to level fund in FY’06. The March of Dimes recommends that Title XXVI of the Children’s Health Act be funded at a level of $25 million in new money to support HRSA’s work with states to improve newborn screening programs across the nation. 


Maternal and Child Health Block Grant

Federal funding for Title V of the Social Security Act, the Maternal and Child Health (MCH) Block Grant, has failed to keep pace with increased demand for services.  Although the Block Grant provides funds for a growing number of community-based programs such as home visiting, respite care for children with special health care needs and “wrap around” services for pregnant women and children enrolled in Medicaid and SCHIP, the funding level for the Grant has not increased since fiscal year 2002. In order for maternal and child health programs to continue to shoulder responsibility for additional services, it must be adequately funded. The March of Dimes recommends fully funding Title V at the authorized level of $850 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
FY2006 FEDERAL FUNDING PRIORITIES
(Dollars in Millions)

Program FY2005 Funding March of Dimes FY 2006 Recommendation National Institutes of Health (Total) 28,444 30,150 National Institute of Child Health & Human Development 1,270 1,397 National Human Genome Research Institute 489 518 National Center on Minority Health and Disparities 196 208 Centers for Disease Control and Prevention (Total) 8,034 8,650 Center on Birth Defects and Developmental Disabilities 125  135 Birth Defects Research & Surveillance 14 20 Folic Acid Education Campaign 2 4 Immunization 479 711 Polio Eradication 106.4 106.4 Safe Motherhood/Infant Health (NCCDPHP) 45 65 Pregnancy Risk Assessment Monitoring System 7.3 12.3 Prevention Research (Preterm Birth) 1.5 16.5 National Center for Health Statistics 109 118 Health Resources and Services Administration (Total) 6,809  7,500 Maternal and Child Health Block Grant 730 850 Newborn Screening 2  25 Newborn Hearing Screening 10 10 Consolidated (Community) Health Centers 1,734 2,038 Healthy Start 102  102 Agency for Healthcare Research and Quality 319  440