The status of newborn screening for SCID throughout the country is constantly changing as more and more states realize the importance and value of implementing this test. States are making definitive strides toward implementation with the knowledge that screening for SCID will literally save children’s lives.
Below is an updated list of states that are currently screening for SCID or have begun the process of implementation. Additionally, I have outlined the current activity in select states and upcoming health committee meetings that will have an impact on the addition of SCID to the state’s newborn screening panel.
States and Territories Currently Screening for SCID:
California New York
Louisiana Puerto Rico
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:
Rhode Island North Carolina
Michigan – has formed Committee to begin the process of implementation read more here
Current Action in Select States:
Connecticut – The Department of Public Health and the Governor have both included a proposal for funding SCID newborn screening in their legislative priorities for 2011. The fiscal note on the provision is $130,000 and includes the addition of two staff positions to analyze the results of the screening test.
Florida – January 28 the Newborn Screening Advisory Committee will be meeting in Jacksonville. A 30 minute presentation on the importance of SCID newborn screening will be given by SCID mom Heather Smith (to read more of Heather’s story, click here) and expert immunologist Dr. Elena Perez, All Children’s Hospital. There may be a vote on addition of SCID to the newborn screening panel following the presentation.
Illinois – The state has discussed the addition of SCID but has already begun the process of adding another condition to the screening panel, unavoidably delaying the inclusion of SCID until the other screening is fully implemented. The subcommittee charged with researching the addition of a new condition to the newborn screening panel, will be having a conference all in February. While, the next Advisory Committee meeting is in May 2011 and will include SCID screening on the agenda.
Nebraska – January 25 the Newborn Screening Advisory Committee will be meeting to discuss findings of their clinical subcommittee that was taxed with researching follow-up protocols and resources needed to begin screening for SCID.
Ohio – In January, the state convened a meeting of expert immunologists to discuss follow-up protocols that will need to be enacted once SCID screening is added in the state. The Newborn Screening Advisory Council will be holding a meeting at the end of February to discuss this component of screening further.
Pennsylvania – The state is planning a stakeholder’s meeting for those interested in the addition of SCID screening to the newborn screening panel in Spring 2011. There is no definitive date at this time, but the meeting will likely be in March or April.
If you would like more information on any of the meetings, or are curious if anything is going on in your state please comment or contact IDF through the CONTACT button at the top of the page.
Please COMMENT below to tell us about the activities you are taking to make SCID newborn screening a reality in your own state!