This bill (S1130) would amend the Public Health Service Act to include activities that address sudden unexpected infant death (SUID) and sudden unexpected death in childhood (SUDC). These activities include supporting fatality case reporting systems, like the Center for Disease Control and Prevention (CDC) SUID and Sudden Death in the Young Case Registry, and awarding grants. Grants would be awarded to support review programs, improve data collection, identify best practices for reducing SUID and SUDC, increase voluntary inclusion of genetic materials, and disseminate information regarding the risk factors for SUID and SUDC. Organizations with plans to reduce infant mortality can apply for grants and receive assistance from the Department of Health and Human Services (HHS). These organizations, with help from the CDC, would develop reporting forms to improve both the quality of collected data and the reporting process.
Every two years, HHS would be required to submit a report that:
- Discusses the incidence and number of SUID/SUDC, including information about racial distribution, information from investigations and autopsies, and recommendations for reducing the incidence of these deaths;
- Assesses the efficacy of the current approaches for reducing and preventing SUID/SUDC; and
- Describes the activities performed under this bill.
According to the bill, SUID is the initially unexplainable sudden death of an infant under 1 year old, and SUDC is the initially unexplainable sudden death of a child between 1 year and 17 years of age. These definitions include both cases that are later explained and cases that are never explained.
SUID includes sudden infant death syndrome (SIDS), which usually occurs while an infant is sleeping. The causes of SIDS are relatively unknown, with some scientists hypothesizing that, if a baby is positioned incorrectly in their bed, they may re-inhale carbon dioxide that they had exhaled earlier and suffocate. Other scientists have attributed SIDS to genetics, either by having an underlying genetic disease or possessing a change in one of their genes that predisposes them to SIDS. The causes of SUDC are also unknown, but researchers hypothesize genetics, infections, or neurological disorders may be at play.