July 26, 2012 was an exciting day for IDF volunteers and parents of children with Severe Combined Immune Deficiency (SCID), Jill Heaps and Deni Berger of Utah. Both moms were in attendance for the meeting of the Newborn Screening Advisory Committee and Genetic Advisory Committee where the groups would decide whether or not to move forward with adding SCID to the state’s newborn screening panel. For Jill and Deni, the meeting meant an opportunity to speak to the Committee members before they made their decision and share their experiences of a life without newborn screening and the early detection and treatment it allows. Happily, the Committees decided unanimously to recommend the addition of SCID newborn screening!
If everything goes as planned, newborn screening for SCID will begin July 2013. Now that the recommendation has been made by the Advisory Committees, the rule must be approved by the Department of Health, the newborn screening fee increased with agreement from the Utah Hospital Association and insurance companies, and the fee increase approved by the state legislature. While there are still many steps to take before Utah can fully implement SCID screening, the dedicated volunteer advocates can celebrate this important step as they continue working with the state throughout this process.
So happy to see this! The screening Would have saved us so much angst with our daughter who is 11 and wasn’t diagnosed with iga deficiency until she was 9. We always knew something was seriously wrong with how seriously and often she was ill, but was misdiagnosed for years.