Frustrated with the slow pace of implementation of newborn screening for Severe Combined Immune Deficiency (SCID), Vicki and Fred Modell decided to coordinate and fund the effort themselves. Today, they announced a multi-million dollar commitment to screen every baby born in every state for this life threatening condition, often referred to as "bubble boy disease."
The Modells established the Jeffrey Modell Foundation (JMF) 25 years ago in memory of their son Jeffrey, who lost his battle with Primary Immunodeficiency (PI) at the age of 15. There are more than 150 genetic defects that are classified under the umbrella of PI. The NIH estimates that at least 500,000 Americans are affected and most are undiagnosed. SCID is the most serious of the disorders and is characterized by experts as a "Pediatric Emergency."
Babies born with SCID fail to develop a functional immune system. They appear normal and healthy at birth, causing delayed diagnosis until they are repeatedly hospitalized for life threatening infections. Undetected and untreated, SCID leads to death before the baby’s first birthday. But with Newborn Screening, they can now be diagnosed and then cured with a bone marrow transplant. The cost of the screening test, called TRECs, is $4 per baby. To date, the Jeffrey Modell Foundation has contributed over $3 million toward programs of Newborn Screening. Affected babies with SCID are already being identified, transplanted, and cured in several states, including California, New York, Wisconsin, Massachusetts, and Louisiana. Overall, only 50% of all babies born in the US live in states that screen for SCID or have stated their intention to screen if funding is available.
