Tag: Legislation

IDF Efforts to Promote SCID Newborn Screening in Arizona

IDF has made great strides toward implementing newborn screening for Severe Combined Immune Deficiency (SCID) in Arizona. The combined efforts of IDF, the SCID, Angels for Life Foundation and dedicated volunteers have proved to be so successful that we anticipate legislation will be enacted and Governor Doug Ducey’s budget will be approved to enable SCID

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Newborn Screening Saves Lives Reauthorization Act Passes in the House

The Newborn Screening Saves Lives Reauthorization Act (H.R. 1281) has passed the House, and it is anticipated will be considered by the Senate for final passage in the very near future!  This Act will reengage important assistance programs that provide funding for improvements and expansion of current newborn screening programs. HR 1281 was introduced in

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Arizona bill would require study of adding SCID newborn screening

Representatives in Arizona introduced HB 2491, an act amending section 36-694, Arizona revised statutes; relating to the newborn screening program. In addition to allowing the department of health to designate another laboratory to process newborn screening tests and requiring the adoption of newborn screening for Critical Congenital Heart Disease, this bill also allows the department

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Newborn Screening Would Save Lives – Opinion piece published in the Baltimore Sun

IDF President and Founder Marcia Boyle advocates for the inclusion of SCID newborn screening in Maryland with an opinion piece published in the Baltimore Sun –   A Routine Test Could Save Babies Born with ‘Bubble Boy Disease,’ Yet the State Repeatedly Fails to Budget for It http://www.baltimoresun.com/news/opinion/oped/bs-ed-newborn-screening-20140210,0,1970795.story By Marcia Boyle 12:36 p.m. EST, February

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Newborn Screening Saves Lives Reauthorization Act introduced to allow newborn screening efforts to continue at the federal level

As we mark the 50th anniversary of newborn screening in the United States, the Newborn Screening Saves Lives Reauthorization Act “(H.R. 1281) has been introduced to reauthorize critical programs that provide assistance to states to improve and expand their newborn screening programs. The current law has sunset, or expired, and a new law needs to

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Change in Arkansas Newborn Screening Statute Will Allow for the Addition of SCID Screening

Arkansas Senate Bill 423 was signed into law on March 18, 2013. The bill changed the language in the current newborn screening code to enable the Board of Health to add new conditions, like SCID, to the state’s screening panel. The bill passed with no issues thanks to the dedicated work of advocates in the

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Advocates continue to push for SCID screening in Washington State

Dr. Suzanne Skoda-Smith from Seattle Children’s Hospital was interviewed on Q13 Fox Seattle February 11, 2013.  Dr. Skoda-Smith explained the importance of SCID newborn screening and how this test will result in saving the lives of children in Washington State.  Currently, funding to add SCID screening is included in the state budget.  You can watch

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Baby born in Alaska proves the need for SCID Newborn Screening

Hayden Filley was born in Alaska a seemingly healthy baby boy.  It was not until months later, after Hayden became very sick and close to deaththat his family discovered he was born with Severe Combined Immune Deficiency.   Hayden was flown to Seattle Children’s Hospital where he was treated by Dr. Suzanne Skoda-Smith.  To learn

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Washington State Board of Health accepts recommendation to add SCID screening dependent on funding

On Wednesday, June 13, 2012, the Washington Board of Health voted unanimously to approve the following motion from Board member Diana Yu, MD: The Board accepts the recommendations of the Severe Combined Immunodeficiency (SCID) Advisory Committee with the understanding that implementation will be contingent upon obtaining sustainable funding. In addition to information provided by the

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A Sunny Day in the Sunshine State! Florida budget is signed making SCID screening the Law of the Land

Florida Governor Rick Scott signed the state budget into law at noon today, April 17, 2012.  Included in that budget was language that will provide funding for the inclusion of testing for SCID within the Florida Newborn Screening Program, effectively making newborn screening for SCID the law of the land!  Advocates and physicians have been

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About IDF SCID Newborn Screening
Severe Combined Immune Deficiency (SCID) is a primary immunodeficiency disease. Babies with SCID appear healthy at birth, but without early treatment, most often by bone marrow transplant from a healthy donor, these infants cannot survive. It is imperative therefore that newborn screening programs are established in all 50 states.

This blog is sponsored in part by Leadiant Biosciences and PerkinElmer.

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