There have been so many recent updates with the campaign to have universal SCID newborn screening, that it seemed helpful to make a comprehensive list of the current status of states where we know IDF volunteers are active on the SCID Newborn Screening Campaign in order to keep everyone up to date.
States and Territories Currently Screening for SCID:
Texas *limited pilot program of ~20,000 births
States where Newborn Screening Advisory Committees have voted to recommend the addition of SCID, but screening has not yet begun:
Some of the States where IDF volunteers are currently active and the status of SCID screening:
Florida – IDF volunteer Heather Smith has contacted the Advisory Committee and Newborn Screening Program. Florida requires FDA approval for all newborn screening tests and cannot add SCID to the panel until the screening test has been approved by the FDA. The Florida Department of Health requested the development of the SCID and Rotavirus Vaccine brochure educating physicians about the contraindication of SCID with the Live Rotavirus Vaccine. IDF developed this brochure with approval of the Medical Advisory Committee and the Florida Health Department distributed to all pediatricians in the state.
Illinois – IDF volunteer Amy Walsh participated in Advisory Committee meetings. IL plans to include screening for SCID. However, due to the fact that IL is currently working on adding another condition to the state screening panel, SCID screening in IL is likely to be 3 years away.
Kentucky – The Newborn Screening program contacted Barb Ballard, IDF Board of Trustees member, about SCID screening. Kentucky is currently in the information gathering phase of implementation, but plans to include SCID in the next 6 months to 1 year.
Maryland – IDF staff with IDF volunteer Julie Nickel participated in a meeting with the Secretary of the Department of Health and Mental Hygiene and the State Lab Director. Maryland plans to move forward with screening, but they will wait until their new state lab is operational in 2013.
Missouri – IDF volunteer Carrie Patchett contacted the State Screening Lab. They stated their intention to move forward with implementation of SCID screening, but due to budgetary issues do not plan to add SCID to the panel for 2-3 years.
Pennsylvania – IDF volunteer Debbie Marshall has contacted the state Health Department and sent them the SCID Newborn Screening Toolkit. Dr. Steven McGeady, an immunologist practicing in the Philadelphia area, has found several SCID families willing to give testimony at an Advisory Committee meeting along with Debbie. Debbie and Dr. McGeady will participate in the Advisory Committee meeting in December to promote the addition of SCID to the newborn screening panel.
Virginia – IDF Board of Trustees member Barb Ballard presented before the Genetic Advisory Committee. Virginia plans to move forward with SCID screening and will make the official recommendation to add to the panel after a fact gathering phase.
Washington – IDF volunteer Bridget Alexander contacted the Department of Health. The State Board of Health supports the addition of SCID, but there are some technical issues that need to be cleared before implementation can begin. Washington expects SCID to be added to the screening panel by 2012 at the latest.
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.