Birth Defects are the leading cause of infant death in the United States.
One in five infant deaths is due to birth defects. In Wisconsin, of the 68,000 births annually, we believe there are approximately 2,700 children born with birth defects, but we don’t know for sure because of the lack of reliable data currently being collected.

Birth Defects Surveillance is a good investment in prevention for Wisconsin with long-term potential savings, not to mention the prevention of emotional hardship experienced by families.
Lifetime costs for a child with a birth defect range from $140,000 to $700,000. For example, the lifetime cost of one case of spina bifida (now potentially preventable with folic acid) is close to $300,000. These costs can impact the state through Medicaid, catastrophic insurance costs or uncompensated health care costs.

An effective BDS system will help Wisconsin meet its public health objectives.
The causes of up to 80 percent of birth defects are unknown. Accurate and complete information will assist Wisconsin in evaluating and developing effective prevention strategies for such birth defects as well as develop research projects to help identify some of the currently unknown causes. Outcome measurement information can be used to design targeted intervention strategies to help the state address public concerns about possible environmental causes of birth defects.

Wisconsin received a “D” from the Trust for America’s Health in their 2003 Birth Defects Report.
Wisconsin—typically a “bellwether state” in the health arena—is falling behind the 41 other states whose BDS programs received the same grade or a better grade than Wisconsin’s.

Your constituents’ privacy and confidentiality is relentlessly protected.
The proposed changes to Wisconsin’s existing Birth Defects Prevention and Surveillance System would make the program more efficient and complete and include strict protections to guard the privacy and confidentiality of Wisconsin’s citizens.  The protections exceed those mandated by the Federal government.

The current Birth Defects Prevention and Surveillance Act (Wis. Stat. 253.12) is fatally flawed.
The proposed legislation will work to reduce program obstacles thereby resulting in a more comprehensive surveillance system.  The current system prevents linkage of the Birth Defects Registry with other health-related databases (e.g., birth records, hospital discharge data).  For a passive surveillance system, such linkage is necessary to ensure complete data and avoid duplicate reporting.  The proposed changes will correct these deficiencies, in part by allowing parents the opportunity to opt out of the inclusion of identifying data in the Birth Defects Registry rather than insisting on an active consent for inclusion.

For more information contact Jeanne Michaels, March of Dimes at 608-838-6649 or ppfeffer@marchofdimes.com