Immune Deficiency Foundation has led nationwide campaign to bring screening for deadly disease to all 50 states.
The Immune Deficiency Foundation (IDF) commends Arizona Governor Doug Ducey for signing into law SB 1368 on Monday, May 22, 2017. This bill, sponsored by Senator Sylvia Allen, adds Severe Combined Immune Deficiency (SCID) to the state newborn screening (NBS) panel. In addition, the recently approved Arizona state budget includes $500,000 to cover the cost of adding SCID.
Arizona has taken a major step to joining 44 other states who are already screening for this condition, bringing us one state closer to achieving IDF’s goal of universal screening for SCID in the U.S.
IDF commends Governor Ducey for his strong endorsement of SCID screening as stated in his annual state-of-the-state address on January 9, 2017. He stated, “Every year, babies across the country are born with Severe Combined Immune Deficiency – SCID. It’s a rare genetic disorder that if not detected and treated early, is deadly. A baby born in Arizona today is automatically screened for a number of diseases – but not for SCID. Let’s change that, by adding SCID to the list. We have the power to save these precious human lives. So let’s act with urgency.”
During this legislative session, IDF, the SCID, Angels for Life Foundation and the March of Dimes collaborated to educate legislators about the need for SCID newborn screening for all babies in Arizona. On February 8, several families with children born with SCID testified for the bill and met with legislators and Governor Ducey in support of this effort. In addition, over 500 emails and hundreds of social media posts were sent to Arizona legislators urging them to support the legislation.
“We are thrilled to add Arizona to the roster of states screening for SCID, and we will continue to work hard to sustain this momentum to reach our goal of newborn screening in all 50 states,” said Marcia Boyle, IDF President & Founder, “Timely diagnosis and treatment makes the difference between life and death for children.”
SCID is a primary immunodeficiency disease where affected infants lack T lymphocytes or white blood cells that help fight infections from a wide array of viruses, bacteria and fungi, leaving these infants susceptible to serious, life-threatening infections. Babies with SCID appear healthy at birth, but without early treatment, most often by bone marrow transplant, these infants cannot survive. Infants with SCID who receive treatment within 3.5 months of birth have a 94% survival rate and greater possibility of living happy, productive lives, thus the importance of newborn screening.
In May 2010, the Department of Health and Human Services (HHS) announced the addition of Severe Combined Immunodeficiency (SCID) – commonly known as bubble boy disease – to the recommended core panel for universal screening of all newborns in the U.S. Now, 44 states are screening statewide representing 90% of babies born each year in the U.S.