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Report Chides States in Monitoring Birth Defects

Most are either flunking or barely passing

WEDNESDAY, Feb. 20, 2002 (HealthDayNews) -- Most U.S. states are either flunking or barely passing when it comes to tracking and preventing birth defects, the leading cause of infant mortality in the nation, according to a new "report card."

The report, issued today by the Trust for American's Health (TFAH), a new nonprofit advocacy organization, evaluated efforts to monitor, research, and uncover possible causes of birth defects in the 50 states as well as the District of Columbia and Puerto Rico.

Only eight states -- Arkansas, California, Georgia, Hawaii, Iowa, Massachusetts, Oklahoma and Texas -- scored "A's," and even they had room for improvement, the report says. More than half the jurisdictions earned a "C" or below.

Nine jurisdictions that have no program or minimal programs received the failing grade of "F." Flunkers were the District of Columbia, Idaho, Kansas, North Dakota, Ohio, Oregon, South Dakota, Vermont, and Wyoming.

"States are doing a very poor job in tracking and actually preventing defects," says TFAH executive director Shelley Hearne. "States have the responsibility for gathering data, and most are not doing their jobs as well as they could. We need to create or improve state monitoring programs."

"Right now, only about two-thirds [of these jurisdictions] are funded and staffed well enough to do even minimal levels of surveillance. Therefore, working with legislators to develop and maintain surveillance systems is a priority," adds Jennifer L. Howse, president of the March of Dimes.

"Birth defect surveillance is an important activity, if for no reason than it lets us ascertain what's going on in the population and do better genetic counseling and recurrence risk counseling," says Dr. Juss Thoene, director of the Hayward Genetics Center at Tulane University School of Medicine in New Orelans. "There's also the possibility of a cluster that could be attributed to some preventable cause so there are reasonably important indications of why these should be done."

Even though the last two decades have witnessed a dramatic decline in overall infant mortality, birth defects continue to be the No. 1 cause of deaths in infants. Every year about 150,000, or one in 28, babies are born with a major birth defect. These defects result in about 20 percent of all infant deaths each year.

The financial costs over a child's lifetime are estimated to be somewhere between $140,000 and $700,000. The emotional and social burdens are incalculable.

Yet the causes of 65 percent to 80 percent of these defects are elusive. "That's why tracking is vitally important," says Howse. "We must be able to detect a pattern."

The states were judged based on 20 criteria, including "prevention and research capacity" and "resources devoted to task."

The "A" states all have programs in place or well on their way. The California Birth Defects Monitoring Program, for instance, maintains a registry, conducts large, population-based studies and has published numerous studies. The program recently found, for instance, that exposure to carbon monoxide and ozone during pregnancy are linked to certain heart defects.

The states that received lower grades were missing all or some components of an adequate monitoring and prevention system. Michigan got a "C" partly because the state does not collect data on fetal death, even though officials there do monitor babies from birth to two years.

Although South Dakota received a failing grade, Barb Buhler, information officer for the state's health departments, says, "To say that we do not collect any information would be inaccurate. We do collect information through vital records and we have fetal alcohol syndrome information, so there are bits and pieces and we'll certainly continue to do that." The state has no current plans to create a complete birth defects registry.

The study authors are now calling on state legislators and governors to either create or improve their monitoring systems and to set national standards so state-to-state data will be comparable. Officials from the March of Dimes intend to use the report cards to convince governors and state legislators to earmark the necessary funds.

Once information is in place, it will be cross-referenced with various environmental data to help identify causes.

"These are the basic tools to track and respond to things that threaten our health -- what's happening, where it's going on and how to fix it," says Hearne. "We're not advocating to just go out there and collect information. We're advocating information to drive good decision-making to protect the health of citizens."

Such a comprehensive system seems elusive to some states. "Unfortunately, we just don't have the resources to plan for the type of comprehensive effort that's planned out in that report," says Mike Heideman, a spokesman for the Department of Health and Environment for Kansas, another failing state. Like South Dakota, Kansas does have some screening mechanisms in place.

What To Do

To view the new report in its entirety, click on Birth Defects Tracking and Prevention.

For more information on birth defects, visit the March of Dimes or the CDC's National Center on Birth Defects and Developmental Disabilities.

SOURCES: News teleconference with Shelley Hearne, Ph.D., executive director, Trust for America's Health, Washington, D.C., Paul Locke, Ph.D., deputy director and general counsel, Trust for America's Health, Washington, D.C., and Jennifer L. Howse, Ph.D., president, March of Dimes, White Plains, N.Y.; interviews with Barb Buhler, spokeswoman, South Dakota Department of Health, Pierre; Mike Heideman, director of public information, Kansas Department of Health and Environment, Topeka; Juss Thoene, M.D., director, Hayward Genetics Center, Tulane University School of Medicine, New Orelans; "Birth Defects Tracking and Preventing: Too Many States Are Not Making The Grade," report from Trust for American's Health
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