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 National Public Policy

First Candle/ Sudden Infant Death Syndrome Alliance is a national non-profit voluntary health organization that unites families, caregivers, health professionals and scientists with government, business and community service groups nationwide to promote infant health and survival. Our mission includes advocacy, education, and research on behalf of important Stillbirth, Sudden Infant Death, Newborn Screening and other infant health and safety initiatives. First Candle requests congressional support for the following:

• Support a six percent (6%) increase in funding for the National Institutes of Health (NIH) and a proportionate six percent (6%) increase for the National Institute of Child Health and Human Development (NICHD), with priority consideration for Stillbirth and SIDS. Continue focus on SIDS research and Back to Sleep messages. Provide additional funding for Stillbirth Research.

• Continue funding efforts to the Centers for Disease Control (CDC) for field-testing of the Sudden Unexplained Infant Death Scene Investigations Reporting Form, which includes training for medical examiners, coroners, and death scenes investigations on how to sensitively administer the form to parents. Support adequate funding through CDC for previously approved, critically needed pilot stillbirth registries in Iowa and Atlanta, with the ultimate goal being a national Stillbirth Registry.

• Support a National Campaign for Cribs, providing funds for community based crib campaigns for needy children in communities with elevated incidence of SIDS, high rates of poverty and minority ethnicity. Specifically approve 2005 earmarked congressional funds for a 5 state First Candle Member Crib Campaign pilot effort.

• Support Senate Bill 423, introduced by Senator Santorum to Cover Stillborn Infants Under Serviceman’s Group Life Insurance, and S.B. 1235, the Increase Servicemembers' Group Life Insurance bill which includes the Senator ‘s provision allowing for death benefits for stillborns. In addition, initiate national legislation guaranteeing mothers who experience Stillbirth a minimum mandated leave for physical and emotional healing, through an Amendment to the Family and Medical Leave Act of 1993… by inclusion of stillbirth as a covered disability.

• Support recommendations prepared for Maternal and Child Health by the American College of Medical Genetics with regard to expansion of Newborn Screening. Encourage Health Services and Resources Administration (HRSA) leadership to assist states in expanding newborn screening to include 29 listed disorders, including all 9 metabolic tests, as well as newborn hearing screening.

Download the entire 2005-2006 PUBLIC POLICY EXECUTIVE SUMMARY (pdf 68 kb)