The Genetic Advisory Committee and the Newborn Screening Sub-Committee for the Commonwealth of Virginia met on October 5th, in Richmond. The Newborn Screening Sub-Committee is working hard to move forward with SCID Newborn Screening because they feel quite simply that it is “the right thing to do.”
Barb Ballard, mother of a teenage boy with SCID and member of the IDF Board of Trustees, spoke before the Newborn Screening Sub-Committee. The Committee allowed her 30 minutes to give them an overview of SCID during which time she presented a power point which included not only her personal experiences, but information from the IDF 2009 SCID Family Survey which emphasizes how important early detection is for the survival and quality of life for SCID children. She also discussed the recent re-release of the live rotavirus vaccines and the contraindication for their use in SCID children. The VA Department of Health has put a copy of the IDF SCID Initiative’s Brochure for Providers on their website where physicians will be directed to it. http://www.vahealth.org/VNSP/providers.htm
The state labs seem prepared to add a new test although more space may be needed as well as possibly additional employees. They are anxious to learn more from the pilot studies done in other states and plan to attend a meeting held by the Center for Disease Control and Prevention planned for the end of October, which will have the intent of informing state newborn screening programs about SCID newborn screening practice. Meanwhile, the sub-committee is moving forward to make sure any necessary regulatory changes are started. The sub-committee also plans to meet with physicians in the state to determine the best plan to make sure approval for treatment is streamlined for children including those who rely on Medicaid. It has not yet been determined if there will be a facility within the state who will be prepared to appropriately treat this children or if referrals will have to be made out of state.
All of this decidedly means forward motion for SCID screening in Virginia. The Advisory Committee cannot officially recommend adding the test to the State Commissioner until more details are in place. It is now their definitive goal to get those details worked out so that they can begin the process of newborn screening for SCID. According to Barb, “There was no question over whether to move forward or not, but simply HOW to move forward.”
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.