The Michigan Department of Community Health is taking action on the Newborn Screening Advisory Committee’s October recommendation that the state include SCID among the conditions for which newborns are screened. The Department is currently forming a committee called the Michigan Primary Immunodeficiency Disorders Quality Improvement Committee (PIDQIC) with the purpose of: 1) assisting in the development of screening, follow-up and medical management for primary immunodeficiency diseases identified with the TREC test and 2) overseeing the implementation of the SCID Newborn Screening Program with recommendations for improvements as needed. As if the news that Michigan is moving forward with implementation was not exciting enough already, IDF volunteer Marisa – who gave testimony at the October meeting of the Newborn Screening Advisory Committee – has been asked to be a member of the committee as a result of the experience and expertise she
displayed at the meeting. This is the second IDF volunteer who after participating in an Advisory Committee meeting in her state was asked to serve as a patient representative on a state health committees! (See Donna Sawyer’s story in DE for more information on her role)
Marisa has already done a great service to the families of Michigan and now she is being recognized with the opportunity to help even more. To learn about Marisa’s experience presenting before the Advisory Committee, please read the earlier post.
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. To learn more about the SCID Newborn Screening Campaign, check out the website! http://primaryimmune.org/programs/idf-scid-initiative/