Take Action

thumbnailCAQM8VC2Newborn Screening Saves Lives Act, Bill S.1858 / H.R. 3825M, was signed into law (Public Law 110-204) by President Bush on April 24, 2008.   Although it was signed into law, it has not yet been funded—$44.5 Million. It is estimated that if we do NOT implement Universal Comprehensive Newborn Screening the cost will exceed a Billion dollars annually.

We can’t afford to lose anymore BABIES!  Please HELP!

Contact your State Government:  It is now up to each individual state to adopt the necessary testing.  That being said, we need help in all 50 states to make this happen.  Please contact your US Senators and Governors and ask them to support funding for the above bill.  You can find their contact information by clicking on this link: Senators’ Contact Information and Governors’ Contact Information

Contact your State Legislature:  Please contact your state legislature and let them know how important Universal Newborn Screening is and why you would like to see screening for SCID added now in your state.  You can find their contact information by clicking on this link: Legislatures’ Contact Information

Contact your State Newborn Screening Laboratory: This link will show you who the contact person is for your particular state by clicking on this link State Lab Contact Information and selecting the state you live in.  Contact them and offer to help them learn about SCID.  Share a brief story with them regarding your experience with SCID.  We need to help them understand why this is so important.

The IDF (Immune Deficiency Foundation) is a national patient organization for persons with primary immunodeficiency disease’s, they have put together a very useful “SCID Newborn Screening Toolkit” to use as your guide when contacting with these individuals.  I think you will find this information extremely helpful and very informative.  This is our opportunity to educate so please use the materials they have put together for us.  Click on the following link and you will find the toolkit near the bottom of the page: IDF NBS Toolkit

In order to find out if there are currently any bills regarding NEWBORN SCREENING in your state click on this link and see: Bills  The first thing you need to do is click on your state.  You’ll see first listed is the state, the bill number is next, followed by a brief description of the bill and the current status of the bill.  So if you see there is a bill in your state regarding newborn screening for SCID, you will certainly want to send a letter to  your representative and see how you can help to get this bill passed.

Send a letter or email: Download a Sample Letter to Legislator on SCID NBS  Or  Sample Letter to State Health Dept., State Lab, or Newborn Screenig Committe

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