From the IDF’s SCID Newborn Screening Blog
On October 4, Virginia’s Genetics Advisory Committee met to discuss the proposed addition of SCID to the state’s newborn screening panel. IDF Board of Trustees member Barb Ballard presented on the current status of implementation throughout the country. Dr. Anne Comeau from Massachusetts’ Newborn Screening lab also presented and spoke about the experience in Massachusetts of adding SCID, emphasizing how the state set up screening and follow up. Massachusetts has been screening since February 2009, resulting in finding four babies in the state with SCID. After hearing the compelling information, the Advisory Committee voted to recommend SCID newborn screening!
The newborn screening program will soon arrange for a meeting of immunologists within Virginia and experts outside the state to discuss follow up protocols. While no legislation is required, the state has to update their regulations to include SCID as a named condition for screening. Though the state did not establish a timeline for the launch of SCID screening and there are still some administrative hurdles to overcome, Virginia is making admirable progress toward the goal of SCID screening!
Thanks go to Barb who has been working tirelessly in her state to see this progress achieved.
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/patients-and-families/idf-scid-initiative/idf-scid-newborn-screening-campaign.
Now everyone has to figure out the state regulations and how to add a new named disease, but it will not require legislative action, just executive review.