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: 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: Tracking Capacity Data use, prevention & research capacity Data sharing capacity Legislation & Resources Criteria developed with National Birth Defects Prevention Network

But even these programs could be improved. Most States Don’t Make The Grade Arkansas California Georgia Hawaii Iowa Massachusetts Oklahoma Texas States Earning an “A”

States Earning a “B” Most States Don’t Make The Grade Alabama Alaska Arizona Colorado Florida Illinois Kentucky 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.

States Earning a “C” “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 Connecticut Delaware Maryland Michigan Nevada North Carolina Puerto Rico Tennessee Utah West Virginia

States Earning a “D” These states have less than fully active programs, or they are only just beginning to establish programs. Many States Don’t Make The Grade Indiana Louisiana Maine Minnesota Mississippi Montana New Hampshire Pennsylvania Rhode Island Washington Wisconsin

These states have marginal birth defects monitoring registries or no program at all. Many States Don’t Make The Grade District of Columbia Idaho Kansas North Dakota States Earning an “F” Ohio Oregon South Dakota Vermont Wyoming

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