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Hats Off to Secretary Sebelius!! And Now the Real Work Begins!!

We are thrilled that in record time, the Secretary of Health and Human Services, Kathleen Sebelius, announced that Severe Combined Immunodeficiency Disease (SCID) will be added to the 29 disorders on the core panel for universal screening of all newborns in the United States. This panel consists of disorders for which the Federal Department of Health and Human Services recommends each state provide for mandatory newborn screening. 

In January, the Secretary’s Advisory Committee on Heritable Disorder in Newborns and Children recommended to the Secretary that SCID be added to the core panel.  And now, SCID is the first disorder nominated by the committee to be added to the core panel of disorders since its founding in 2003. SCID is a primary immunodeficiency disease, commonly known as bubble boy disease. Affected infants lack the white blood cells that help resist infections due to a wide array of viruses, bacteria and fungi. Babies with SCID appear healthy at birth, but without early treatment, these infants cannot survive.

The Secretary’s recommendation will soon be communicated to all states and territories of the United States.  She will be urging states to change their policies to allow for SCID newborn screening.  One of the particularly interesting aspects of the Secretary’s recommendation is her request for a report, due in one year, which will outline how implementation of the addition of SCID to the newborn screening protocols is proceeding.  We need to prod the states to act quickly because she is monitoring their actions!

Through the IDF SCID Initiative, a project dedicated to address the acute need for SCID education, awareness, and diagnosis, IDF has been instrumental to add SCID to the newborn screening panel. Members wrote letters, testified and met with government officials to convince the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children to recommend the addition of SCID. 

Now the real work begins!  The IDF SCID Newborn Screening Campaign is underway with the goal to have each state add SCID to their protocols so the screening will actually take place!  Visit SCID Newborn Screening Campaign Headquarters to learn about this issue.  There is a SCID Toolkit complete with information and steps to take action in your own state.  If there are no campaign volunteer leaders in your state, we hope you will pick up the reins and start your own grassroots effort.

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Does anyone know the additional cost of the SCID test?

According to preliminary findings of the Wisconsin pilot program, the estimated cost for the screening is $5.50 per infant. Sources vary, but generally the cost ranges from $5-$6 per screening. Isn’t that a small price to pay to potentially save the life of a child?