SCID Newborn Screening Campaign: Working to Ensure All Babies in U.S. Are Screened

As of June 1, 2016, Georgia has become the 39th state to begin screening for Severe Combined Immune Deficiency (SCID), also known as the bubble boy disease. Adding Georgia covers 87% of all births in the U.S., but there are still states that have yet to begin screening for SCID. Each state varies in regards to how their newborn screening is implemented.

Over the past several years, the Immune Deficiency Foundation (IDF) has proudly collaborated with volunteers, coalitions and organizations working to ensure all babies born in the U.S. are screened for SCID. Babies with SCID appear healthy at birth, but without early treatment, most often by bone marrow transplant from a healthy donor, these infants cannot survive.

On May 21, 2010, the Department of Health and Human Services (HHS) announced the addition of SCID to the recommended uniform screening. Since then, in cooperation with families affected by SCID and advocates across the country, IDF has worked to establish newborn screening programs for SCID in all 50 states. Tremendous progress has been made, but there is still work to be done. According to the information IDF has gathered, below is a breakdown of implementation status in each remaining state.

States with 2016 Implementation Plans

  • Alabama – Piloting phase. Goal to begin December 2016.
  • Alaska – Piloting phase. Goal to begin August 2016.
  • Kansas – Plans in place to implement September 1, 2016.
  • Missouri – Pending legislation that hopefully will pass July 1, 2016.
  • Nevada – Recipient of CDC grant. Currently purchasing equipment, hiring and training staff.
  • North Carolina – Plans in place to begin December 2016.IDF-SCID-Map-06-06-2016-Large
  • North Dakota – Goal to implement July 1,2016.
  • Vermont – Progressing.

State Currently without Implementation Plans

  • Arizona – No plan in place and efforts are facing state financial and political barriers. IDF is working with local volunteers to engage legislators.
  • Indiana – No plan in place due and efforts are facing state financial barriers. IDF is working with local volunteers to engage legislators.
  • Louisiana – Recipient of CDC grant, however, major fiscal holes in the state are preventing screening from initiating.

With the help of so many, IDF has helped make great strides in since 2010 and remains optimistic that every baby—no matter where they are born—will have the opportunity to live a healthy life.

But more collaborative efforts are needed to accomplish the goal. IDF will not stop working until all 50 states are screening for SCID. We encourage everyone to become involved by urging their state officials to incorporate newborn screening for SCID in each state that has not yet made the decision that every life is worth saving.

Want to get involved? Contact us: idfscidintiative@primaryimmune.org or 800-296-4433.