SCID Newborn Screening in the Land of 10,000 Lakes!

Minnesota’s Newborn Screening Advisory Committee took the monumental step Tuesday, October 5, of formally recommending the addition of SCID to the state’s newborn screening panel!  Kathy Antilla, Director of Education and Volunteer Development at IDF, was on hand to provide this statement after the Committee’s vote:

Thank you for giving me the opportunity to speak.  My name is Katherine Antilla and I represent the Immune Deficiency Foundation. 
Founded in 1980, the Immune Deficiency Foundation (IDF) is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research.
Without treatment, Severe Combined Immune Deficiency Diseases are fatal, because those with the condition have no protection from the infectious agents that surround us.  These viruses and bacteria, for which the rest of us have natural immunities, produce uncontrolled infections in SCID children.  Very early diagnosis and treatment is the real key to survival, but without newborn screening this is not available for the great majority who lack a family history.  If disease is recognized only as a result of infection, it is often too late for effective treatment.  Hence, screening at birth can mean the difference in a life measured in many years, rather than in weeks. 
Thank you for recognizing this for the pediatric emergency that it is.  The IDF applauds your decision to institute newborn screening for SCID in the state of Minnesota.  Thank you for taking this important step toward improving the health of some of Minnesota’s most vulnerable children.
Now that the Advisory Committee has recommended screening for SCID, the Minnesota Commissioner of Health must decide whether or not to accept this recommendation and begin the process of implementing SCID newborn screening.  With the Committee’s recommendation, it is very likely that the Commissioner of Health will decide to go forward with screening!  Implementation may still be some time away, but this is an exciting development and definitely a step in the right direction for universal SCID newborn screening!
Please COMMENT below to tell us about the activities you are taking to make SCID newborn screening a reality in your own state!  Comment or contact IDF through the CONTACT button at the top of the page to talk with someone about what is already happening in your state and how you can get involved.