President Barak Obama signed “The Sudden Unexpected Death Data Enhancement and Awareness Act” into law December 18th. The bill requires the Secretary of Health and Human Services (HHS) to continue and report on activities related to stillbirth, sudden unexpected infant death, and sudden unexplained death in childhood, including collaborating with states and experts to improve the quality and consistency of data collected after one of these deaths.
That’s the sterile summary written by the Congressional Legislative Office. The law basically sets forth legislative instructions for the Center of Disease Control and National Institute of Health to coordinate with states to collect data in a way that researchers can use to help prevent these tragic deaths.
While that sounds somewhat dry or not that impacting, what it really does is give the NIH and CDC the legislative intent which they did not have before, to spend money and resources within their budget addressing stillbirths, SUID and SUDC. Prior they really didn’t have the congressional blessing. Now they do.
Symbolically, this gives the awareness and legitimacy about how devastating and how many stillbirth deaths there are each year. With the most confrontational Congress in recent history, for all of them to unite on this issue is truly remarkable. That, in of itself, is worthy of media attention and urge every bereaved parent to contact their local medical reporters to see if they too will do a story.
This is a long time coming and represents the beginning. Thank you to all who participated in the grassroots effort.