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SCID Newborn Screening in Indiana on the Horizon

February 7, 2018

UPDATE - SCID in Indiana 2/14/18

HB 1017, which adds which spinal muscular atrophy and severe combined immunodeficiency to the list of disorders in the newborn screening requirements for Indiana, passed the House.  It has now crossed over to the senate and has been referred to the Senate Committee on Health and Provider Services. IDF will be monitoring its progress and advocating in support of its passage to help ensure funding is allocated to implement SCID screening in the coming year.

Original post 2/7/18:

Saving infants born in Indiana from Severe Combined Immune Deficiency (SCID) is on the horizon! Over the last several months, concerted efforts by the Immune Deficiency Foundation (IDF) have made significant progress in adding SCID to the newborn screening panel, and the regulatory process is currently underway.

In an effort to move the process along, in November 2017, IDF met with representatives from the Governor’s office, the Indiana State Department of Health (ISDH) and the state screening lab. On November 8, IDF presented information on the value of SCID newborn screening to the ISDH Executive Board. IDF also submitted formal comments at the January 10, 2018 ISDB Executive Board and coordinated with Indiana immunologist Dr. David Patterson to present updated information to the board. At that meeting, Dr. Patterson reported that the board unanimously voted to adopt the rule to add SCID and Spinal Muscular Atrophy (SMA) to the newborn screening panel in Indiana. In addition, legislation was introduced in January 2018 by State Representative Doug Gutwein that adds SCID and SMA to the list of disorders on the newborn screening requirements. While legislation is not required to add SCID to the screening panel, House Bill 1017 will help to ensure that funding is allocated to enable the ISDH to implement screening for SCID and SMA in the coming year.

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