Mini Update Time!

Just some brief updates about the status of SCID newborn screening in a few states –









IL SCID Newborn Screening Legislation
The Governor of Illinois officially signed the bill into law that will make SCID newborn screening mandatory on August 23, 2011!  The Illinois Department of Public Health has moved forward from the administrative side, initiating a public comment period on the addition of SCID screening.  So far, no public comments have been made.  It looks very likely that a pilot for SCID screening will begin in select hospitals in the state in January 2012!  Following the results of the pilot, SCID screening will be universally implemented across Illinois!   Wonderful news for the “Land of Lincoln”!

If you are interested to read the new law in Illinois, you can access the legislation text at

CA SCID Newborn Screening Legislation
AB 395, Newborn Screening Program introduced by Assemblyman Pan continues to make its way through the legislative process.  There was a scare during the week of August 21 that the bill would die.  After successfully passing the Assembly, AB 395 was moved into the suspense file by the Senate Appropriations Committee due to its cost.  The suspense file is used by the Appropriations Committee to temporarily hold bills containing expenditures over a certain amount so that the Committee can get a better view of the fiscal impact of the bills.  If the newborn screening bill was not moved off the suspense file, it would not pass the legislature and become law.  IDF initiated an Action Alert letter writing and phone call campaign to request that the Chair of the Appropriations Committee and the Senate President pro Tem moved AB 395 from the suspense file.  On August 26, they did just that!  Now AB 395 will go to vote on the Senate floor and if it passes there, on to the Governor to sign into law!  Look for future updates on this legislation and Action Alerts when the bill comes up for vote.

You can sign up for Action Alert notifications at

Nebraska Advisory Committee
The second week of August, the Nebraska Newborn Screening Advisory Committee made the recommendation to add SCID to the state’s newborn screening panel!  Now the newborn screening program is working to develop information so that the request for funding for SCID screening can go through the necessary review process with the legislature.  Nebraska has made that all important first steps and are actively making progress to see SCID newborn screening start saving lives in the state.

Keep this momentum going and work to make SCID newborn screening universal throughout all 50 states!

Please comment below and let IDF know if you are engaged in any SCID Newborn Screening Campaign activities in your area!

UPDATE for the Updates -Since writing this post, CA’s SCID newborn screening legislation officially passed the Senate Floor on August 31!  Now it is on to the Governor’s desk!  The Governor has until October 9 to take action.  He can either sign the bill into law or veto it before that date.  If he does not veto the bill before then, it will automatically become law on October 9.