Birth defects information lacking, survey finds

If states did a better job of tracking and preventing birth defects, they could make significant strides in beating the cause of nearly 20% of all infant deaths each year. That’s the conclusion drawn by the Trust for America’s Health (TFAH), a Washington, DC-based advocacy group, that surveyed the 50 states, District of Columbia, plus Puerto Rico and gave each a letter grade based on efforts to monitor and research birth defects. More than half the states received a C, D, or F on their report card.

Paul Locke, TFAH’s principal investigator on the report, tells State Health Watch that society is not investing enough in tools for prevention of illness. "We’re disinvesting where we should be investing," he says. "TFAH focuses on prevention, on what the public health system can do to become more active in prevention. You need to understand the biology, study causes, and risk factors, and have tracking data on where and when birth defects occur." Mr. Locke says the group’s report tries to shed light on an area where investment could be made. "We know how to do what needs to be done," he says. "We’re alerting the public and policy-makers to the need."

Birth defects are the leading cause of infant deaths in the United States, Mr. Locke says, affecting approximately 150,000 babies each year. There is a serious impact on families when a baby has a birth defect, with the possibility of frequent surgeries, emotional and social burdens, and costs that can range from $150,000 to more than $700,000 over a child’s lifetime.

Despite an overall drop in infant mortality, birth defects persist, the TFAH report says.

In fact, the percentage of infant deaths from birth defects has been rising, and the causes of as many as 80% of birth defects are unknown.

Information, Mr. Locke says, is the first step that must be taken toward prevention. Birth defects registries can be used to provide basic data about the frequency and location of specific birth defects, and the data can be cross-referenced to identify anomalies, trends, and possible causes.

Even though the need for good information is obvious, TFAH says, most states don’t make the grade. Many states don’t track birth defects statewide, the thoroughness of data collection and quality assurance is insufficient, and two-thirds of states with registries don’t explore links with environmental factors.

The TFAH report graded states on several criteria:

• tracking capacity;

• data use, prevention, and research capacity;

• data-sharing capacity;

• legislation and resources.

Only eight states received a grade of A: Arkansas, California, Georgia, Hawaii, Iowa, Massachusetts, Oklahoma, and Texas.

Mr. Locke says that states with a grade of B or C have gaps in their programs. Perhaps, the reasons for these gaps are systems are not statewide, they might track limited birth defects, or information may not be reported in a timely fashion.

The B states were Alabama, Alaska, Arizona, Colorado, Florida, Illinois, Kentucky, Missouri, Nebraska, New Jersey, New Mexico, New York, South Carolina, and Virginia. The C states and territories were Connecticut, Delaware, Maryland, Michigan, Nevada, North Carolina, Puerto Rico, Tennessee, Utah, and West Virginia.

D states — Indiana, Louisiana, Maine, Minnesota, Mississippi, Montana, New Hampshire, Pennsyl-vania, Rhode Island, Washington, and Wisconsin — have less than fully active programs or are just beginning to establish programs.

And the nine F states — District of Columbia, Idaho, Kansas, North Dakota, Ohio, Oregon, South Dakota, Vermont, and Wyoming — have what TFAH describes as marginal birth defects monitoring registries or no program at all.

The group recommends creation or improvement of state monitoring programs, creating programs where they don’t now exist, and improving methods in existing programs to ensure statewide coverage, cover all birth defects, and report information in a timely fashion.

TFAH also calls for more state and federal funding, saying that the Centers for Disease Control and Prevention in Atlanta should help fund birth defects programs in every state and state legislatures should provide at least 25% of needed funding.

In order for measurable progress to be made, TFAH calls for national minimum standards so that data are comparable across states and possible links between birth defects and environmental exposures can be studied.

In the long term, the group is calling for creation of a nationwide health tracking network, noting that the United States has no network for tracking where and when chronic diseases such as birth defects, cancer, and asthma occur, or for examining potential links to factors in the environment. Such a network is important given that chronic diseases account for 70% of all deaths in this country.

The new nationwide tracking network would build on birth defects registries and other efforts to track chronic and infectious diseases, Mr. Locke says. "The information provided would be a key first step toward prevention," he says. "The public health infrastructure needed for nationwide health tracking would also help strengthen our ability to detect and respond to incidents of biological or chemical terrorism."

He tells SHW that leadership to bring about the changes the group seeks has to come from all three levels of government — federal, state, and local. One problem right now, Mr. Locke says, is the four vacancies in key federal health positions that have gone unfilled throughout the Bush administration. "There’s a tremendous public health leadership gap at the federal level."

States that earned an A ranking have taken some leadership, he says, but the others have not. Local governments may want to be more active, but they rely on resources passed on to them from the state and federal governments. "People at the local level do emergency response, but we haven’t equipped them to do their job."

The first step to be taken, he says, is to fill the four vacant federal public health positions with qualified public health practitioners. "What would the country say if the top leadership positions of any other essential service were vacant?"

Mr. Locke sees some good signs for the future because Congress has made it clear that it wants health tracking on a national level. "We need to be sure the program we make is sustainable."

[Contact Mr. Locke at (202) 589-0940.]