Tag Archives: Advisory Committee Recommendation

Washington State Expected to Add SCID to Its Newborn Screening Panel

The Washington State Board of Health is proposing a rule that would amend the Washington Administrative Code (WAC) to add screening for Severe Combined Immune Deficiency (SCID) to the state’s newborn screening panel. If adopted, the screening would be conducted with an increase of $8.10 in the newborn screening fee per baby. After reviewing the evidence and

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Advocate urges action in Nebraska for SCID Newborn Screening

Jeremy Penn, advocate for SCID newborn screening in Oklahoma and Nebraska, wrote an editorial to the Lincoln Journal Star calling upon the Governor of Nebraska to make newborn screening for SCID a priority. Jeremy details the short life of his daughter Samantha and explains how her life would have been different with SCID screening. Read

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SCID Newborn Screening – Status of Implementation by State Map

With recent developments in the screening for SCID throughout the country, below is an updated map showing the status of implementation for the United States as of February 2013. Courtesy of the Newborn Screening Translational Research Network

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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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Pennsylvania Bulletin Announces Intention to begin Screening Newborns for SCID

The Pennsylvania Department of Health has published a notice in the Pennsylvania Bulletin announcing their intent to add SCID to the newborn screening follow-up panel. Formal notice will be published upon implementation of a laboratory information management system, which the Department anticipates will occur in 2013. The publication of the notice is a necessary rulemaking

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Georgia Advocate Tells Her Story, Advisory Committee Says Yes to SCID Screening

Susan Lottes, mother of three children born with SCID, spoke at the Georgia Newborn Screening and Genetics Advisory Committee on November 19, 2012 along with her sons’ immunologist, Dr. Lisa Kobrynski of Emory Children’s Center and Emory University School of Medicine. Susan told the members of the Committee, gathered to discuss the possibility of recommending

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A Unanimous YES for SCID Screening in Utah

July 26, 2012 was an exciting day for IDF volunteers and parents of children with Severe Combined Immune Deficiency (SCID), Jill Heaps and Deni Berger of Utah. Both moms were in attendance for the meeting of the Newborn Screening Advisory Committee and Genetic Advisory Committee where the groups would decide whether or not to move

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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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VA Advisory Committee votes YES for SCID Screening

On October 4, Virginia’s Genetics Advisory Committee met to discuss the proposed addition of SCID to the state’s newborn screening panel.  IDF Board of Trustees member Barb Ballard presented on the current status of implementation throughout the country.  Dr. Anne Comeau from Massachusetts’ Newborn Screening lab also presented and spoke about the experience in Massachusetts

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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

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About IDF SCID Newborn Screening
Severe Combined Immunodeficiency (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 PerkinElmer and Sigma-Tau Pharmaceuticals, Inc.

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