Copyright 1999 Federal News Service, Inc.
Federal News Service
APRIL 14, 1999, WEDNESDAY
SECTION: IN THE NEWS
LENGTH:
2439 words
HEADLINE: PREPARED TESTIMONY BY
DR.
JENNIFER L. HOWSE
PRESIDENT
ON BEHALF OF THE
MARCH OF DIMES BIRTH
DEFECTS FOUNDATION
BEFORE THE HOUSE APPROPRIATIONS
COMMITTEE
LABOR, HEALTH AND HUMAN SERVICES AND EDUCATION SUBCOMMITTEE
BODY:
Mr. Chairman, members of the
Committee, I am Dr. Jennifer Howse, President of the March of Dimes Birth
Defects Foundation. The March of Dimes is a national voluntary health agency
founded in 1938 by President Franklin Delano Roosevelt to address public health
issues. The March of Dimes has more than 3 million volunteers and 1,500 staff
members with nearly 100 chapters located in every state, the District of
Columbia and Puerto Rico. A unique partnership of scientists, clinicians,
parents, business leaders and other volunteers, the Foundation works to improve
the health of babies by preventing birth defects and infant mortality. In order
to accomplish this mission, the March of Dimes conducts and funds programs of
research, community services, education and advocacy.
I am grateful for this
opportunity to appear before the Subcommittee because I hope to gain your
support for increased funding of several important federal initiatives that will
help prevent birth defects and reduce infant mortality. A chart at the end of
this statement offers funding recommendations for a number of programs on which
the Foundation places a high priority. Today I will focus only on those programs
related to birth defects prevention, health statistics, biomedical research, and
improved access to health care for mothers and children.
Folic Acid
Education Campaign
Each year in the United States, an estimated 2,500 babies
are born with neural tube defects (NTDs), birth defects of the brain and spine
such as anencephaly and spina bifida. These NTDs are among the most serious,
costly and preventable birth defects that occur in the United States. According
to the California Birth Defects Monitoring Program, the lifetime cost of each
case of spina bifida is nearly $300,000. 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. Unfortunately, not enough women of
childbearing age are getting the message about the critical need for adequate
folic acid intake before beginning pregnancy. According to a survey conducted by
the Gallup Organization for the March of Dimes only 30% of American women are
consuming enough folic acid to prevent NTDs. The March of Dimes has committed
$10 million to reduce the incidence of NTDs by 30% by the year 2001. The
Foundation is working closely with the Centers for Disease Control and
Prevention (CDC) and more than 20 public and private organizations that are
members of the National Council on Folic Acid to lead this effort. This
coalition of diverse organizations with sustained access to health professionals
and consumers has launched the National Folic Acid Campaign. The current CDC
funding level of $1.5 million for folic acid education is woefully inadequate.
An infusion of additional resources is needed now to leverage the opportunity
afforded by the public-private partnership of the National Council on Folic Acid
to mount a successful campaign. Additional funding would be used to support
national as well as state and local activities to educate women about this
highly effective prevention strategy. The Foundation recommends an increase of
$20 million in CDC's FY 2000 appropriation to implement this much-needed
campaign to prevent birth defects.
Birth Defects Surveillance Research and
Prevention Programs
March of Dimes volunteers and staff are grateful, Mr.
Chairman, for Congress' leadership in passing the Birth Defects Prevention Act
of 1998 (P.L. 105168), which established authority within CDC to provide
surveillance, research and services aimed specifically at the prevention of
birth defects. Currently, CDC is working with state governments and other health
and education organizations to implement the provisions of this legislation. CDC
has funded eight Centers for Birth Defects Research and Prevention. These
centers in Arkansas, California, Georgia, Iowa, Massachusetts, New Jersey, New
York, and Texas each receive approximately $800,000 per year to conduct
epidemiological research on the prevention of birth defects. The Centers
identify cases for inclusion in the National Birth Defect Prevention Study, the
largest case-control study of birth defects ever conducted. In addition, each
Center has responsibility for working with state health officials to expand and
improve state birth defect surveillance systems, and to conduct other
epidemiological studies. However, the Centers are not fully funded and hence
have had to limit initiatives critical to the success of this effort. With
increased funding, the Centers could collect additional information that would
allow for the study of genetic and environmental causes of birth defects and
dramatically increase our understanding of the causes of birth defects. These
studies will provide valuable information for developing effective prevention
programs. In doing so we will have an opportunity to reduce the devastating
human and economic costs of birth defects. The March of Dimes recommends an
additional $8 million to fully fund the eight existing Centers.
Through
cooperative agreements, CDC also provides technical assistance to help states
establish or improve birth defects surveillance programs. Recently, CDC awarded
eighteen states grants of approximately $100,000 a year for three years.
However, 36 states applied for funding, clearly demonstrating that the need
exceeds available funding. The March of Dimes recommends the Committee
appropriate an additional $2 million in funding so that additional grants may be
awarded, thereby allowing more states to establish the systems needed to track
birth defects.
National Center for Health Statistics
The National Center
for Health Statistics is a primary source of health and vital statistical
information. Statistics provided by 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. For example, NCHS data are used to monitor infant mortality
rates, use of prenatal care and incidence of prematurity and low birthweight
births. 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 1999 was an improvement, additional resources are needed if NCHS is to
meet the increased demand for health information brought about by changes in
health care delivery. Our nation has a poor record in preventing prematurity.
Advances in biomedical research, and the need to monitor many new state health
care efforts, including the effectiveness of the Children's Health Insurance
Program, make an increase in funding all the more necessary. The March of Dimes
supports the President's request for an increase of $15 million for this vital
function.
Fetal Alcohol Syndrome
Fetal alcohol syndrome (FAS) occurs as
a result of a woman's use of alcohol during pregnancy and is a leading cause of
mental retardation. Despite the fact that 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. Currently, CDC receives approximately $2.9 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.
To
prevent alcohol exposed pregnancies, CDC should increase from 3 to 8 the number
of preconceptional intervention projects that target high risk women. The March
of Dimes recommends an increase of $6 million in funding for CDC's FAS programs.
National Institutes of Health
Last year this Subcommittee led the effort
to increase funding for the National Institutes of Health. The March of Dimes
strongly supported this increase and recommends a 15% increase in the overall
budget of NIH for FY 2000. I would like to mention briefly three areas of
particular interest to the Foundation.
The National Institute for Child
Health and Human Development (NICHD) has compiled an impressive record of
success in funding research on the prevention of birth defects, infant
mortality, low birthweight, unintended pregnancy, and developmental
disabilities. NICHD is currently supporting genetic research into the causes of
birth defects such as Fragile X and Down syndrome; and is funding studies
designed to identify causes of premature delivery. With increased funding NICHD
could expand its support of research on autism, the biological causes of preterm
birth, and human structural birth defects. Since the early 1980s, the rate of
preterm birth has increased 17%. 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 in funding
of $161 million, bringing the appropriation for NICHD to just over $915 million.
In addition, the March of Dimes supports the work being done to study the
human genetic structure at the National Human Genome Research Institute (NHGRI).
Mapping the human genome has the potential for profoundly accelerating research
on the prevention of birth defects. Studies of the genome will allow us to
identify genetic defects that cause birth defects, eventually leading to the
development of prevention techniques and treatments that will revolutionize the
delivery of health care. NHGRI is now entering a critical phase in the ambitious
plan to produce a draft of the sequencing of the human genome by next year and
to complete mapping of the human genome by 2003. Adequate funding is needed to
meet this goal, therefore the March of Dimes recommends the Subcommittee provide
funding at the level included in the Professional Judgment Budget, approximately
$383 million.
Finally, the March of Dimes supports additional funding for
the pediatric research initiative in the office of the NIH Director. Illnesses
and diseases that affect infants and children often cross Institute boundaries.
The pediatric research initiative has enabled the Director to support promising
areas of research by encouraging collaboration between Institutes. The
Foundation recommends an appropriation for the pediatric initiative of $50
million for FY 2000.
Maternal and Child Health Block Grant
The Maternal
and Child Health Block Grant funds state health agencies for support of programs
to 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 programs
such as Medicaid and the new Child Health Insurance Program by providing
"wrap-around" services and enhanced access to care in underserved areas. The
block grant received an increase of $19 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. This would be
the first major increase in funding for Title V services since the early 1990s.
Additional funding would give states the resources they need to enhance prenatal
and infancy home visitation by nurses, which 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 by increasing spending
limits for durable medical equipment, home visiting and respite care, and
supplemental physical and occupational therapy visits.
Polio Eradication
The March of Dimes was founded in 1938 to fight poliomyelitis. While the
Foundation's mission has changed, interest in completing the task of polio
eradication continues. The Foundation has joined Rotary International, the U.S.
Committee for UNICEF, the American Academy of Pediatrics and the Task Force for
Child Survival and Development to eradicate polio worldwide by the year 2000.
Global polio eradication will save lives and reduce unnecessary health related
costs. Currently, the United States spends more than $230 million each year to
protect newborns against the threat of importation of the polio virus. Once
polio is eradicated, these resources will be freed to address other priorities.
The international effort to eradicate polio has made great progress, however
without additional funding we may not be able to meet our target eradication
date. The President proposed an increase in his FY 2000 budget to eradicate
poliomyelitis worldwide. The March of Dimes supports that request of $83.4
million for CDC's polio eradication activities.
Universal Newborn
Hearing Screening
Hearing loss is one of the most common
abnormalities present at birth and if undetected will interfere with normal
speech and language development. The President's budget includes a $4 million
initiative to enable the Health Resources and Services Administration (HRSA) to
assist states in developing newborn hearing screening and
intervention services. The March of Dimes supports this request and urges the
Subcommittee to provide an additional $5 million to CDC. This funding would
allow HRSA and CDC to provide services and technical assistance on data
collection and management and to make grants to states to conduct research to
identify the causes and risk factors associated with congenital hearing loss.
Healthy Start
Finally, the President has recommended $105 million to
continue support for the Healthy Start program that is targeted at communities
with high rates of infant mortality. The March of Dimes supported the creation
of this program and recommends continued funding of this initiative at the
current level until the evaluation is complete. At that time, we will have the
information we need to identify the appropriate next steps.
Thank you for
this opportunity to testify and provide you with our recommendations for the
coming fiscal year. And, finally, thank you for your leadership and strong
support for these vital health programs.
END
LOAD-DATE: April 20, 1999
