NEW YORK, Dec. 16, 2013 /PRNewswire/ -- The newborn screening test for Severe Combined Immune Deficiency (SCID) using the TREC Assay, is 100 percent sensitive and not a single newborn with this life threatening defect has been lost since the test's implementation five years ago. Nevertheless, public health officials still deliberate over the test's economic efficiency and that has resulted in the Jeffrey Modell Foundation's (JMF) newly created economic model, "Decision Tree."
If newborns are not screened at birth for both SCID, also known as "bubble boy" disease, and related T-Cell Lymphopenia, a lack of white blood cells, they will sustain overwhelming infections and hospitalizations, averaging costs estimated to be at least $2 million in the first year of life. There is a 95 to 100 percent success rate of survivorship for babies transplanted in the first three months of life, however, the survival rate sharply declines with time. SCID is fatal in infancy if not treated, and as more serious infections develop, it is more difficult to transplant.
According to Vicki Modell, Co-Founder of JMF, "newborn screening for SCID and related
T-Cell Lymphopenia is cost effective, and most importantly, it is life saving and allows children with these defects the opportunity to live a healthy life."
The cost to screen is $4 to $5 per infant. This includes equipment usage, labor, and reagents. More than 6 million babies have been screened in the United States over the past three years. The actual incidence of SCID is found to be approximately 1:66,000 and T-cell Lymphopenia 1:20,000. The average is approximately 1:33,000 babies.
The analysis validated by peer reviewed scientific literature is harmonized and applicable for healthcare providers and public health programs around the world to assist in the decision making process to add SCID to their Newborn Screening Program.
Fred Modell, Co-Founder of JMF, addresses healthcare officials, "Governments throughout the world need not wait for additional economic data. The Decision Tree can be utilized now to reach a conclusion as to whether a screening program should go forward."
About Jeffrey Modell Foundation
Vicki and Fred Modell established the Jeffrey Modell Foundation in 1987, in memory of their son Jeffrey, who died at the age of fifteen from complications of Primary Immunodeficiency – a genetic condition that is chronic, serious, and often fatal. JMF is a global nonprofit organization dedicated to early diagnosis, meaningful treatments and, ultimately, curs through research, physician education, public awareness, advocacy, patient support, and newborn screening. The Jeffrey Modell Centers Network (JMCN) includes 556 physicians at 234 academic institutions in 196 cities and 78 countries spanning 6 continents. For more information about PI, visit www.info4pi.org or email the Jeffrey Modell Foundation at [email protected].
Vicki and Fred Modell, Co-Founders
Jeffrey Modell Foundation
Visit the Jeffrey Modell Foundation Website
Image with caption: "Jeffrey Modell Foundation." Image available at: http://photos.prnewswire.com/prnh/20131114/MM16675-a
Image with caption: "Jeffrey Modell Foundation." Image available at: http://photos.prnewswire.com/prnh/20131209/DC29396-b
SOURCE Jeffrey Modell Foundation