- The ARC - California Edition -

Federal Birth Defects Prevention Act Becomes Law

Six years after its original introduction, federal legislation was passed this year to establish authority within the Centers for Disease Control and Prevention (CDC) to provide surveillance, research and services aimed directly at the primary prevention of birth defects.

Using input provided by the numerous bill’s supporters, the authors of this measure successfully argued and demonstrated to the congress that birth defects are the leading cause of infant mortality and are directly responsible for one out of every five infant deaths. They presented information showing that thousands of the 150,000 infants born with a serious birth defect annually face a lifetime of chronic disability and illness.

"Birth defects can be caused by exposure to environmental hazards, adverse health conditions during pregnancy, or genetic mutations. Prevention efforts are slowed by lack of information about the number and causes of birth defects. Outbreaks of birth defects may go undetected because surveillance and research efforts are underdeveloped and poorly coordinated".

The major components of the Birth Defects Prevention Act of 1998 include:

1) requiring CDC to greatly expand the collecting, analyzing and reporting on the incidence and prevalence of birth defects;

2) authorizing CDC to operate at least five regional centers to conduct applied epidemiological research on the prevention of birth defects; and,

3) calls for the establishment of a National Information Clearinghouse on Birth Defects to collect and disseminate to health professionals and the public information on birth defects, including prevention measures.

This act should significantly increase the prevention activities coordinated by CDC and lays out a formal plan for what CDC is currently doing on a limited scale. Funding for implementation of the legislation will be established through the government’s appropriation process each year, but in the near term should result in about $15 to $20 million of new money specifically designated to carry out the purposes of the bill.

Kathy McGinley represented The Arc at the formal signing of the bill at the White House on April 21, 1998. Other supporters present at the signing included representatives of The March of Dimes (the lead supporter), the National Association of Children’s Hospitals, the American Public Health Association, the American Academy of Pediatrics, and the Spina Bifida Association of America.