In collaboration with the New England Newborn Screening Program (which currently screens for SCID in Massachusetts), and with grant support from the federal Centers for Disease Control and Prevention (CDC), the Texas Newborn Screening Program is conducting a pilot study for SCID screening. This pilot is limited and not designed to be a state-wide program, but rather to evaluate how SCID testing could be incorporated into the existing Texas Newborn Screening program. Currently families with babies born at St. David’s Medical Center in Austin, TX have the option to participate in the pilot; however, if a parent outside of the study area wishes their child to participate in the study, The Texas Department of State Health Services will attempt to accommodate that participation to the best of their ability. The goal is to screen 20,000 Texas babies for SCID this year.
The test will be performed using the same blood spots collected for routine newborn screening in Texas, with the parents having provided advance written consent for participation in the study. The pilot is in preparation for the possible future addition of SCID to the Texas Newborn Screening Panel, at which time all infants born in the state would be screened for SCID.
IDF Texas volunteer Racheal Sanders is the mother of a son who passed away as a result of SCID. His death likely could have been prevented had he had earlier detection and treatment of the disease. Racheal is committed to work toward the implementation of SCID screening throughout Texas in the hopes that it will prevent another family from experience what she had to experience with the loss of her child. She has been in contact with the Department of State Health Services, Newborn Screening Genetic Advisory Committee, her senators, and the Governor advocating for SCID screening in the state. Racheal sent the policymakers the IDF SCID Newborn Screening Toolkit to educate them about this disease, and shared her personal story of loss to illustrate the importance of early detection. Another IDF volunteer and SCID mom in Texas, Eryn Matthews has been in contact with the State Lab to share her story, Eryn and Racheal will be working together in the future to ensure that their stories are heard and to try to see that SCID screening becomes permanent throughout Texas after the pilot program is complete.
To learn more about the pilot program, please see the Texas Department of State Health Services’ website.
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.