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Action Shifts to Statehouses in Battle to Save Babies Born with SCID


Vicki and Fred Modell, co-founders of the Jeffrey Modell Foundation, today called upon governors, state public health officials, and legislators, in all states, to implement screening of newborns with Severe Combined Immune Deficiency (SCID).

Last week, in a historic vote, the Federal Government took action when the Secretary’s Advisory Committee for Heritable Disorders in Newborns and Children (ACHDNC) unanimously agreed to recommend the addition of SCID to the uniform newborn screening panel. The recommendation was forwarded to the Secretary of Health and Human Services. This is the first condition to be added to the core panel in nine years.

SCID, also known as “Bubble Boy Disease”, is a group of disorders characterized by an impaired immune system, causing infants to develop recurrent infections leading to death in early childhood. Newborn babies with SCID will not survive to their first birthday if not screened and properly diagnosed. But when detected in the first few months of life, SCID can be cured with a better than 95% success rate and children can go forward and live normal and healthy lives. The National Institutes of Health (NIH) estimates that the cost for this screen will be no more than $5 per baby, and it is anticipated these costs will go lower.

The Modells championed this cause for 24 years, and testified at last week’s hearings. They have worked in close collaboration with the NIH, the U.S. Centers for Disease Control and Prevention (CDC), and public health officials nationwide advocating that all newborns be screened for this condition.

Two states currently mandate SCID screening for all newborns - Wisconsin and Massachusetts. The federal panel’s action now makes it easier for other states to move forward and it is expected that all states will do so.

“The battle to save the lives of babies born with SCID is just at the beginning,” Fred Modell said. “States must proceed to protect their citizens and we ask the governors, public health commissioners, and legislators of all states to take action as quickly as possible and implement this screening.”

The Jeffrey Modell Foundation operates a global Network of specialized Research, Diagnostic, and Referral Centers for Primary Immunodeficiency that includes 414 expert physicians working in 51 countries. In the U.S. alone, there are 79 Jeffrey Modell Centers all aimed at saving young lives and improving quality of life.

Vicki Modell stated that “The unanimous vote to add SCID to the national newborn screening core panel was a milestone victory. We thank the Committee for their positive decision on behalf of all of the babies with SCID that we lost, the babies today who have hope, and for all the future babies yet to be born, who will have a really good chance at life. Now, it is up to the states.”

More about the Jeffrey Modell Foundation is available at

Vicki Modell, 212-819-0200
Fred Modell, 212-819-0200
William G. Armstrong, Jr., 212-922-0900
Lisa McEnery, 212-922-0900

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