States turn to Legislation in their efforts for SCID Newborn Screening

Three states have recently turned to the legislature in their efforts to quicklyachieve SCID newborn screening implementation.  Below, IDF outlines the current status of these legislative campaigns and next steps needed if the bills are to become law.

Connecticut

In Connecticut S.B. No. 543 AN ACT PROVIDING NEWBORN SCREENING FOR SEVERE COMBINED IMMUNODEFICIENCY DISEASE was introduced as a legislative priority of the Connecticut Department of Public Health (DPH).  This legislation would add SCID to the list of conditions for which it is mandatory to screen newborns in the state.  The bill was referred to the Committee on Public Health with a hearing scheduled for February 23, 2011.  IDF volunteer Lisa Forrest submitted written testimony in support of this legislation, sharing her own story of almost losing a child due to a late diagnosis of SCID.  Despite their initial interest and support of the bill, the DPH reversed course and made it clear that this issue is no longer a priority this year.  It remains unclear what the catalyst was for this reversal of interest.

The Public Health Committee has until April 1st to take action on SB 543. If the committee doesn’t take action by April 1st, or votes unfavorably on the legislation, then it essentially dies in committee.  A point of contention surrounding this legislation is the high cost associated with the bill which is $225,000 to $400,000. Of course, the cost to start up testing for SCID does not take into account all of money that will be saved by the health care system in the future as these babies live healthier lives free of serious medical complications and cost.

Unfortunately, given the current fiscal crisis, a solo bill with a negative fiscal impact note will most likely never become law in Connecticut.  With the DPH no longer supporting the bill, it is unlikely that it will make it out of committee.

Illinois

Illinois is also a hot spot for political activity around SCID newborn screening.  Although the Newborn Screening Advisory Committee recently voted to recommend the addition of SCID to the state’s newborn screening panel, advocates in the state have a fear that if left to their own devices, the Illinois Department of Public Health (IDPH) will not actually begin SCID screening for another two years.  New legislative action is underway that will push the Department to implement faster.

IDF volunteer Amy Walsh (far right) gave testimony for the IL bill, displaying SCID angels to committee members

SB1761 Newborn Screening Tests is gaining momentum as IDF volunteer Amy Walsh works with her state Senator, A.J. Wilhelmi, and IDF partners with local advocates to build a grassroots effort in the state.  The bill states that if IDPH is unable to provide expanded screening for SCID using the State Laboratory within 180 days after the effective date of the amendatory Act, then they must temporarily provide the screening through another accredited laboratory until IDPH has the capacity to provide screening themselves through the IL State Lab.  IDF believes this legislation will allow screening in Illinois to occur quickly and therefore start helping families in the state as soon as possible.  SB1761 was assigned to the Public Health Committee on February 23, 2011 and is up for a hearing on March 8, 2011.  Amy Walsh will be giving oral testimony at this hearing along with written testimony from IDF.  If voted on favorably at this hearing, the bill would then move to a vote on the Senate floor.

California

Finally, an Assemblyman in California has introduced AB 395 Newborn Screening Program in an effort to make SCID newborn screening in California mandatory.  This  follows the success of the pilot program that has been screening all newborns in California for SCID since August 16, 2010.  The legislation would make the screening a permanent part of public health law in California in recognition of the positive outcomes that have come already from the pilot program.  “Since [August], already, seven babies with SCID, and one additional baby with a related problem with lymphocytes very much like SCID, have been identified and because they were identified so early, effective treatment has been instituted,” said Dr. Jennifer Puck of University of California San Francisco. “So we’re that much further ahead already with the pilot program. Now it’s time to make that a permanent part of public health in California by adding it to the newborn screening program.”

IDF is working with the California chapter of the March of Dimes to advocate for this legislation.  SCID families or other PIDD advocates in the state are encouraged to go to March of Dimes’ Capitol Day in Sacramento on May 17 to push for support of AB 395.  You can learn more about the development of the TREC test for SCID newborn screening and screening in California at http://www.ucsf.edu/news/2011/03/9558/newborn-screening-deadly-immune-disorder-scid-possible-due-ucsf-research

If you are interested in more information or in participating in any of the advocacy activities in these states please contact IDF at idfscidinitiative@primaryimmune.org .

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