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April 4, 2000, Tuesday

SECTION: PREPARED TESTIMONY

LENGTH: 2705 words

HEADLINE: PREPARED TESTIMONY OF ANNA ELEANOR ROOSEVELT CHAIR, NATIONAL PUBLIC AFFAIRS COMMITTEE VICE CHAIR, BOARD OF TRUSTEES ON BEHALF OF THE MARCH OF DIMES BIRTH DEFECTS FOUNDATION

BEFORE THE HOUSE APPROPRIATIONS COMMITTEE LABOR, HHS & EDUCATION SUBCOMMITTEE

BODY:
Mr. Chairman, members of the Subcommittee, I am Anna Eleanor Roosevelt, vice chair of the March of Dimes Board of Trustees and Chair of the Public Affairs Committee. The March of Dimes is a national voluntary health agency founded in 1938 by my grandfather, President Franklin Delano Roosevelt, to find a scientific prevention of the threat of polio to the public. Now, the Foundation works to improve the health of babies by preventing birth defects and infant mortality. The Foundation has more than 3 million volunteers and 1,500 staff members with chapters in every state, the District of Columbia and Puerto Rico.

I am grateful for this opportunity to appear before the Subcommittee this afternoon. My statement will focus on several programs related to birth defects prevention, biomedical research, and improved access to health care for mothers and children. Attached to this statement is a chart that details programs of interest to the March of Dimes with recommended funding levels for FY 2001.

Before I begin, I want to thank the Chairman of the Subcommittee for his commitment to providing critical funding for important programs within the jurisdiction of this subcommittee. I appreciate that this has not been an easy task with so many competing priorities. On behalf of the March of Dimes, I want to thank you and the members of the Subcommittee and the staff for all that you do to improve the health of mothers, infants and children.

National Institutes of Health

The March of Dimes joins with many others in supporting a 15% increase for the National Institutes of Health in FY 2001. With the leadership provided by this subcommittee, Congress is well on the way to doubling NIH funding by 2003. In addition to supporting the overall goal of increasing funding for NIH, I would like to mention three specific funding recommendations within NIH supported by the Foundation.

The mission of the National Institute for Child Health and Human Development (NICHD) is closely aligned with that of the March of Dimes. NICHD seeks to assure that every baby is born healthy, that women suffer no adverse consequences from pregnancy, and that all children have the opportunity to fulfill their potential for a healthy and productive life unhampered by disease or disability. While progress has been made in preventing infant deaths resulting from respiratory distress syndrome, and Sudden Infant Death Syndrome, birth defects remain the leading cause of death in infants under I year of age. With increased funding NICHD could expand its research on birth defects and developmental biology; such as testing a new treatment for autism, expanding research on Fragile X, the most common inherited cause of mental retardation, and using the NICHD Maternal-Fetal Medicine Network to study ways to reduce the incidence of low birth weight. Prematurity/low birthweight is the second leading cause of infant mortality in the United States and it is the leading cause of death among African American infants. The March of Dimes supports the Institute's Professional Judgment Budget, which includes an increase of $294 million, bringing the appropriation for NICHD to just over $1 billion.

In addition, the March of Dimes supports the work of the National Human Genome Research Institute (NHGRI). Mapping and sequencing data generated by the human genome project will be particularly useful to researchers studying genes associated with human hereditary conditions and working toward the prevention of birth defects. Additional resources could accelerate the sequencing of the mouse genome and support Genomic Centers of Excellence. These centers are critical to the development of the next generation of research tools to accelerate understanding of the DNA sequence information. The March of Dimes recommends funding at the level included in the Professional Judgment Budget, $430 million.

Finally, the March of Dimes supports the ongoing efforts of this subcommittee to give higher priority to extramural research devoted to children's illnesses and conditions overall. This priority is especially important, given that according to NIH's own estimates, pediatric research has been declining as a percentage of total NIH funding. The Foundation recommends an appropriation of $50 million for FY 2001 for the pediatric research initiative to enable the NIH director to make pediatric research a visible priority, and to leverage new investments in pediatric research through collaboration among institutes.

Centers for Disease Control and Prevention

For over 30 years, the Centers for Disease Control and Prevention (CDC) has been deeply involved in the prevention of birth defects. The public health impact of birth defects is tremendous. Of the four million babies born each year in the United States, approximately 150,000 are born with a serious birth defect. According to CDC, the lifetime costs of caring for infants born in 1992, with at least one birth defect/1 or cerebral palsy was about $ 8 billion. The emotional and financial burden for the families with affected children is devastating.

CDC's surveillance, research, and prevention activities were formalized with enactment of the Birth Defects Prevention Act in 1998 (P.L. 105-168). The March of Dimes appreciates the subcommittee's specific request made last year to CDC to report to Congress on major activities and future plans related to the prevention of birth defects. Increased funding from Congress in recent years has allowed CDC to expand its commitment to surveillance, research and prevention, and we are confident this new report will support our request for additional funding. The Foundation's goal is full funding for the Birth Defects Prevention Act, which is currently authorized at $40 million.

The first step in preventing birth defects is surveillance to find out what types of birth defects are occurring, how often and where. Approximately three-quarters of states have some kind of system for tracking birth defects; however, their methods, data sources, and number of birth defects included in the tracking system vary considerably. A recent report of the Pew Environmental Health Commission, chaired by former Senator Lowell Weicker, evaluated each state on monitoring efforts, and graded each on its quality. Seventeen states, the District and Puerto Rico received an "F" grade because they do not currently track birth defects at all. Only eight states were awarded an "A" for systems that can be helpful to future research on the causes of birth defects. The remaining 25 states have tracking systems that are in need of improvement. The report concluded that a national approach to build consistent, modern state tracking systems is essential to the development of prevention strategies that will alleviate suffering and deaths from birth defects as well as chronic disease and disability. The Commission recommended full funding for the Birth Defects Prevention Act.

CDC offers financial and technical assistance to states to initiate or improve their systems. In 1999, eighteen states received grants of approximately $100,000 a year for three years. However, 36 states applied for assistance. I understand our home state of Illinois would be interested in CDC support to evaluate its current surveillance program. The Wisconsin legislature is currently debating legislation to set up a tracking system and could use federal assistance.

March of Dimes supports additional funding of at least $2 million to expand assistance for state-based birth defects surveillance activities.

For 30 years, CDC has conducted epidemiological research into the causes of birth defects. These efforts were expanded significantly in 1996 with the establishment of the eight Centers for Birth Defects Research and Prevention. Each center (in Arkansas, California, Georgia, Iowa, Massachusetts, New Jersey, New York, and Texas) receives approximately $800,000 per year and all are collaborating on the National Birth Defects Prevention Study, one of the largest case- control studies of birth defects ever conducted. In addition, the Centers work with state health officials to expand and improve state birth defect surveillance systems, and to conduct other epidemiological studies. With increased funding, the Centers could collect additional information that would allow for the study of genetic and environmental causes of birth defects and thereby increase dramatically our understanding of the causes of birth defects. The March of Dimes recommends an additional $8 million to expand the work of the eight centers.

The ultimate goal of surveillance and research is to develop and implement strategies to prevent birth defects. An example of such a prevention activity is the current folic acid education campaign to prevent neural tube defects (NTDs). Each year in the United States, an estimated 2,500 babies are born with NTDs, birth defects of the brain and spinal cord, such as anencephaly and spina bifida. These NTDs are among the most serious, costly and preventable birth defects. The lifetime cost of each case of spina bifida in 1992 was estimated to be nearly $300,000. Yet, up to 70 percent of NTDs can be prevented if all women of childbearing age consume 400 micrograms of folic acid daily, beginning before pregnancy. The March of Dimes has committed $10 million and is working closely with CDC and more than 40 public and private organizations which have joined the National Folic Acid Campaign. Every state has established a Folic Acid Council under the leadership of the March of Dimes working in concert with state health departments. Last year Congress increased funding for CDC' s efforts in support of the folic acid campaign from $1.5 to $2 million. However, current funding is woefully inadequate. The Foundation recommends an increase to $20 million in the FY 2001 appropriation to enable CDC to effectively promote this lifesaving intervention.Another area where there is need for more resources to implement a prevention strategy is fetal alcohol syndrome (FAS). FAS is a leading cause of mental retardation and occurs as a result of a woman's use of alcohol during pregnancy. Although this birth defect is completely preventable, more than 2,000 infants are born each year in the United States with FAS. CDC estimates that the lifetime cost of each case of FAS is $1.4 million. Yet, CDC receives less than $3 million to fund FAS prevention programs, a level of support that has not been increased since FY 1996. The March of Dimes recommends a funding increase of $6 million to be used by CDC to expand its FAS surveillance programs from 5 to 20 states.

Finally, the Foundation recommends support for increased funding of four other activities at CDC. As I mentioned at the beginning of my statement, the March of Dimes was founded to fight poliomyelitis. While the Foundation's mission has changed as the result of success, interest in completing the task of polio eradication continues. Global polio eradication will save lives and reduce unnecessary health- related costs. While polio has been wiped out in the United States, we still spend more than $230 million each year to protect newborns against the threat of importation of the polio virus. Once polio is eradicated worldwide, these resources will be freed to address other priorities. This subcommittee responded to the need and increased funding last year, and the March of Dimes supports the Administration's request of $91 million in FY 2001 for CDC's global polio eradication activities.

Second, the National Center for Health Statistics (NCHS) is a primary source of health and vital statistical information. Statistics provided by NCHS on births, deaths, health status, and use of health services allow public health officials, researchers, health care providers and others, including the March of Dimes, to monitor the health of the American population. Without such a stable and ongoing source of comparable data it would be impossible to identify public health needs or to monitor whether the nation is meeting its goals to improve the health of the American people. During the 1990s, NCHS funding did not keep pace with inflation, threatening the ability of the Center to conduct critical data analysis. While the funding level provided in FY 2000 was an important improvement, additional resources are needed if NCHS is to keep up with the increased demand for health information brought about by changes in health care delivery. The March of Dimes supports an increase of at least $5 million for this vital agency.

In addition, the Foundation urges the committee to provide $6 million for the Program for Training and Research in Preventive Maternal and Child Health Services authorized by the Healthcare Research and Quality Act of 1999. This initiative is modeled after the "friendly access" program launched this year by the Chiles Center at the University of South Florida in collaboration with the Disney Institute and other partners. This research and training initiative is aimed at improving the quality of service in the delivery of perinatal health care for vulnerable populations. It is designed to address cultural and communication barriers that contribute to patient dissatisfaction, decreased utilization, and poor perinatal health outcomes.

And finally, the Foundation supports CDC's request for additional funding to implement the critical improvement plan for its buildings and facilities. Failure to address the serious deficiencies in laboratories and other facilities at CDC ultimately compromises the vital work of CDC.

Health Resources Services Administration

In addition to biomedical research, surveillance and prevention activities, the Foundation supports programs to ensure access to health care for mothers, infants and children. The Maternal and Child Health Block Grant funds state health departments programs that improve the health of mothers and children. Initiatives supported by the block grant include community-based services such as home visiting and respite care for children with special health care needs. Title V complements Medicaid and the State Children's Health Insurance Program by providing "wrap-around" services and enhanced access to care in underserved areas. The block grant received a modest increase of $15 million last year. The March of Dimes recommends a substantial increase of $100 million to better meet the needs of the 20 million women and children who benefit from these services each year. Additional funding would give states the resources they need to expand prenatal and infancy home visitation programs, an approach that has been shown to improve women's prenatal health-related behavior and to reduce rates of child abuse and neglect as well as maternal welfare dependence. The 900,000 children with special health care needs who use Title V services would also benefit as increased funding would enable states to raise spending limits for durable medical equipment, home visiting and respite care, and supplemental physical and occupational therapy visits.

A new program (coordinated by both HRSA and CDC) was established last year to assist states in developing and monitoring newborn hearing screening programs and establishing intervention services. Hearing loss is one of the most common functional abnormalities present at birth and, if undetected, will interfere with normal speech and language development. Current funding of $7 million allows HRSA and CDC to provide technical assistance to states interested in developing screening programs, collecting data on this birth defect and supporting research to identify the causes and risk factors associated with congenital hearing loss. The March of Dimes supports expanding these programs by providing an additional $4.5 million to HRSA and an additional $3.5 million to CDC to create model screening and surveillance programs that include a link to pediatric services.

Thank you for this opportunity to testify on the programs of highest priority to the March of Dimes.

END

LOAD-DATE: April 6, 2000

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