The EveryLife Foundation is working to expand the lifesaving potential of newborn screening in California. Last month, SB 1095 was introduced by pediatrician and California State Senator Dr. Richard Pan. This bill would help eliminate the legislative delay in newborn screening and ultimately ensure that patients are treated as early as possible. Early screening plays a vital role in ensuring that rare diseases are detected and can be better treated. Since 2005, the Secretary of Health and Human Services (HHS) has convened an Advisory Committee on Heritable Disorders in Newborns and Children, which endorses a Recommended Uniform Screening Panel (RUSP) for diseases with available treatments. Even with this guidance, states often take vastly different approaches to screening, and SB 1095 aims to streamline this implementation in California. Earlier this month, the HHS Secretary recommended that states screen for both adrenoleukodystrophy (ALD) and mucopolysaccharidosis I (MPS I). For many states, new legislation will have to be passed to start screening for these diseases. SB 1095 would enable California to rapidly screen for any disease once added to the RUSP, potentially saving lives.
https://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue-300x126.png 0 0 Grant Kerber https://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue-300x126.png Grant Kerber2016-03-18 11:39:592016-03-18 11:50:14From EveryLife Foundation: Take Action to Support Lifesaving Newborn Screening Legislation in California