2014

Latest Victims of Sequestration are Newborns! JMF Fights for SCID Babies

NEW YORK, April 29, 2013 /PRNewswire-USNewswire/ -- Who would have ever thought that sequestration and budget battles would determine whether a precious newborn baby would survive? How is it possible that a "continuing resolution" could actually deprive a newborn baby of "continuing" his or her life? It is exactly what has happened to our innocent newborns, who are victimized by government officials that are dealing with partisan politics and divisiveness.

About four million newborns in the United States are routinely screened at birth for a variety of conditions.  One of these is Severe Combined Immune Deficiency (SCID), also known as "Bubble Boy Disease."  This is a life threatening condition in which infants fail to develop a normal immune system.  Undetected and untreated, the baby will die before his or her first birthday.  But with Newborn Screening, they can be diagnosed and cured with a bone marrow transplant.  The cost of the Newborn Screening test, called TRECs, is $4, and the U.S. Department of Health and Human Services (HHS) described the test as "the National Standard for all Newborn Screening programs."  SCID is one of 200 genetic defects called Primary Immunodeficiency (PI). The National Institutes of Health (NIH) estimates that 1-2% Americans are affected with Primary Immunodeficiency and most are undiagnosed.

Vicki and Fred Modell established the Jeffrey Modell Foundation (JMF) 26 years ago in memory of their son who succumbed to Primary Immunodeficiency at the age of 15.  Working in close collaboration with the U.S. Centers for Disease Control and Prevention (CDC), they created a very successful program of Physician Education, Public Awareness, and Newborn Screening.  Affected babies with SCID are now being identified, transplanted, and cured in many states, and 50% of all newborns are being screened for SCID with initial funding provided to the States by the Foundation.  Expectant parents, physicians, public health officials, hospitals, and the general public have received educational and training materials from JMF.  This has happened only because of the CDC/JMF Education and Awareness program.  The initiative has generated more than a 10:1 return on appropriated federal dollars and has been described by the U.S. Congress as "a model of public-private collaboration."

Now there is a crisis for newborns!  Sequestration and the recently enacted continuing resolution have deprived HRSA and CDC from completing the Program of Education, Awareness, and Screening that would cost $2 million.

According to Fred Modell, "We are screening more than half of all newborns in the United States for SCID.  This is a life-threatening condition that can be cured!  Without the government, the direct result will be the death of babies that otherwise would be screened, diagnosed, treated, and cured.  More than 20 State Public Health Laboratories are prepared to immediately begin the screening program, but the States need the startup funds, and we cannot do it alone.

Vicki Modell added, "Tomorrow 11,000 babies will be born in this country, but only about half of them will be screened for SCID.  They are the lucky ones!  How sad for those babies that have the misfortune of being born in the States that are not screening because of "budgetary constraints."  Some of them will suffer throughout their short lives, and ultimately, will not survive.  We cannot stand by while our government fails to protect these precious lives. Will it be budgets or babies…?"

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 dedication to early diagnosis, meaningful treatments, and, ultimately, cures through research, physician education, public awareness, advocacy, patient support, and newborn screening.

For more information about PI, visit www.info4pi.org or email the Jeffrey Modell Foundation at info4pi@jmfworld.org.

Media Contacts:
Vicki Modell, Jeffrey Modell Foundation, (212) 819-0200
Fred Modell, Jeffrey Modell Foundation, (212) 819-0200

Related Link:
To learn more about the Jeffrey Modell Foundation

SOURCE Jeffrey Modell Foundation



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