Welcome to the NEW IDF Severe Combined Immune Deficiency (SCID) Newborn Screening Campaign blog! It is amazing how many people are already aware of and working with the IDF campaign to have SCID (commonly known as bubble boy disease) added to the newborn screening panel in all 50 states. We are particularly grateful for the efforts of IDF volunteers Barb Ballard and Heather Smith.
IDF would like to use this blog as a venue where information can be shared with the PIDD community about efforts made to make universal SCID newborn screening a reality. This blog will share what IDF volunteers are doing to make sure that SCID newborn screening is implemented. We also want you to COMMENT and share with us your own ideas and experiences fighting for SCID newborn screening in your state!! If you haven’t already become involved in your own state, hopefully reading the posts here will help stimulate you to join in the efforts!!
A little background on the SCID Campaign–
SCID is a primary immunodeficiency disease. Affected infants lack T lymphocytes, 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, most often by bone marrow transplant from a healthy donor, these infants cannot survive.
SCID has been characterized in the medical community as a pediatric emergency. If a baby with SCID receives a bone marrow transplant in the first 3.5 months of life, the survival rate can be as high as 94 percent. However, the survival rate drops to less than 70 percent for infants who are transplanted after that age. The main causes for the drop in survival rate are serious infections undiagnosed babies with SCID developed prior to transplantation.
On May 21, 2010, Kathleen Sebelius, Secretary of Health and Human Services (HHS) announced that SCID be added to the 29 disorders on the core panel for universal screening for all newborns in the United States. This panel consists of disorders for which the U.S. Department of Health and Human Services has recommended each state provide for mandatory newborn screening. It is imperative that we create the momentum to establish SCID newborn screening programs in all 50 states, as each state ultimately makes its own decisions about which conditions will be included in its individual newborn screening panel.
Already, many IDF volunteers have been working in their home states for the inclusion of SCID on their state’s newborn screening panel!
Barb Ballard has contacted the Genetics Advisory Committee and her State Lab in Virginia. She sent these individuals the Ernstige gecombineerde immunodeficiëntie pasgeborene Toolkit and plans to give public testimony at the next Genetics Advisory Committee meeting in October.
Similarly, Heather Smith has been in contact with the Newborn Screening Advisory Committee and State Lab in Florida. The next meeting of the Advisory Committee in Florida is July 16, and they will be discussing the feasibility of implementation of SCID newborn screening in the state. A family affected by SCID will be attending this meeting to share their experience with the Committee.
ACTION: If there are any other Florida families who are impacted by SCID and would like to share their testimony, please contact us as we would like to attend the Committee in full force to show the scope of this issue!
In fact, there are approximately 20 IDF volunteers who have already gotten the process going in their state. Keep checking in to this blog to learn “who is doing what where”. And we want your ideas and suggestions that have worked in your state by posting your comments.
To find out more about how to start contacting people in your own state, check out the Ernstige gecombineerde immunodeficiëntie pasgeborene Campaign website and look under “Take Action.”
https://www.primaryimmune.org/advocacy_center/scid/scid_newborn_screening_initiative.asp
If you want to find out more about what is happening in your state, check for updates on the blog and contact .
Please let us know about SCID newborn screening activities in your state by commenting to the blog and copying IDF when you contact newborn screening officials. POST YOUR COMMENTS!!! WE WANT TO HEAR FROM YOU!!!
Rhode Island is well on it’s way to NBS, The Newborn Screening Committee along with the Dept of Health has endorsed.