Birth Defects
Tracking and Prevention:
Too Many States Are Not
Making the Grade
Presentation by
The Trust for America’s Health
February 20, 2002
Main Conclusions
• Many states are doing a poor job of tracking
and preventing birth defects, the #1 cause of
infant death in the U.S.
• States can play a critical role in gathering
valuable information for research and
analysis, but most do an inadequate job
• What’s needed:
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Create or improve state monitoring programs
Boost state and federal funding
Set and achieve national minimum standards
Create nationwide health tracking network to help
prevent birth defects and other chronic diseases
like cancer and asthma
The Problem
• Birth defects are the #1 cause of infant
death in the United States
• 1 in 5 of all infant deaths each year
• Approximately 150,000 babies each year
• 1 out of every 28 infants
The Problem
• Serious impacts on children and
families
• Pain, disability, frequent surgeries for child
• Emotional and social burdens for family
• Financial costs of $140,000 to $700,000
over a child’s lifetime
The Problem
• Despite overall drop in infant mortality,
birth defects persist
• Percentage of infant deaths from birth
defects rising
• Causes of as many as 80% of birth defects
are unknown
Information:
First Step Toward Prevention
• Birth defects registries
• Provide basic data about the frequency and
location of specific birth defects
• Data can be cross-referenced to identify
anomalies, trends, possible causes
Without information, we are helpless to
prevent birth defects
Most States
Don’t Make The Grade
• Incomplete coverage
Many states do not track statewide
• Inadequate methods
Thoroughness of data collection and quality
assurance is insufficient
• Missed connections
Two-thirds of states with registries don’t
explore links with environmental factors
One-quarter of U.S. births are not covered by
any birth defects monitoring program
Most States
Don’t Make the Grade
• TFAH graded states on these criteria:
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Tracking Capacity
Data use, prevention & research capacity
Data sharing capacity
Legislation & Resources
Criteria developed with
National Birth Defects Prevention Network
Most States
Don’t Make The Grade
States Earning an “A”
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Arkansas
California
Georgia
Hawaii
• Iowa
• Massachusetts
• Oklahoma
• Texas
But even these programs could be improved.
Most States
Don’t Make The Grade
States Earning a “B”
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Alabama
Alaska
Arizona
Colorado
Florida
Illinois
Kentucky
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Missouri
Nebraska
New Jersey
New Mexico
New York
South Carolina
Virginia
“B” and “C” states have gaps in their programs. Some systems
aren’t statewide. Some may track limited birth defects and
information may not be reported in a timely fashion.
Many States
Don’t Make The Grade
States Earning a “C”
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Connecticut
Delaware
Maryland
Michigan
Nevada
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North Carolina
Puerto Rico
Tennessee
Utah
West Virginia
“B” and “C” states have gaps in their programs. Some systems
aren’t statewide. Some may track limited birth defects and
information may not be reported in a timely fashion.
Many States
Don’t Make The Grade
States Earning a “D”
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Indiana
Louisiana
Maine
Minnesota
Mississippi
Montana
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New Hampshire
Pennsylvania
Rhode Island
Washington
Wisconsin
These states have less than fully active
programs, or they are only just beginning to
establish programs.
Many States
Don’t Make The Grade
States Earning an “F”
• District of
Columbia
• Idaho
• Kansas
• North Dakota
• Ohio
• Oregon
• South Dakota
• Vermont
• Wyoming
These states have marginal birth defects
monitoring registries or no program at all.
Recommendations
• Create or improve state monitoring
programs
• Create birth defects monitoring programs
where they don’t exist
• Improve methods where they do exist
• Ensure statewide coverage
• Cover all birth defects
• Report information in a timely fashion
Recommendations
• Boost state and federal funding
• CDC should help fund birth defects
programs in every state
• State legislatures should provide at least
25% of the necessary funding
Recommendations
• Set and achieve national minimum
standards
• A role for CDC Center on Birth Defects
and Development Disabilities
• Ensure data is comparable across states
• Study possible links between birth defects
and environmental exposures
Recommendations
• Create nationwide health tracking network
• The U.S. has no network for tracking where and
when chronic diseases like birth defects, cancer
and asthma occur, or for examining potential links
to factors in environment
• Chronic diseases account for 70% of all deaths in
the U.S.
• Network would build on birth defects registries
and other efforts to track chronic and infectious
diseases
• Information provided would be key first step
toward prevention
• Public health infrastructure needed for nationwide
health tracking would also help strengthen ability
to detect and respond to incidents of biological or
chemical terrorism
Birth Defects
Tracking and Prevention:
Too Many States Are Not
Making the Grade
Presentation by
The Trust for America’s Health
February 20, 2002