On June 14, IDF staff were on hand for the Maryland State Advisory Council on Hereditary and Congenital Disorders meeting where the Council voted without dissent to recommend the addition of SCID to the state’s newborn screening panel! A formal recommendation will be sent by the Council urging the Secretary of the Department of Health and Mental Hygiene (DHMH) to move forward with SCID screening with all possible speed. DHMH is also in favor of adding SCID to the state’s panel and has applied for funding from the Centers for Disease Control and Prevention (CDC) to implement screening for SCID. Though they are hopeful of receiving this funding, the competition is great and only two states will ultimately receive funding for their newborn screening programs.
The focus of the Advisory Council, DHMH, and IDF will now turn to advocating for the inclusion of start-up and implementation costs for SCID newborn screening in the Governor’s next budget. The DHMH Laboratory Administration included language for this in their budget request in Fiscal Year 2012, but ultimately this language did not make it into the final budget. The Advisory Council took a significant step toward including SCID among the state’s newborn screening panel, but there is still much advocacy and work to do to make this a reality. Thanks go to IDF volunteer Julie Nickel who attended meetings with IDF staff to educate DHMH about this issue.
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://www.primaryimmune.org/advocacy_center/scid/scid_newborn_screening_initiative.asp