“Sometimes, those kids spend months in the ICU and never recover,” Skoda-Smith says. Skoda-Smith and Torgerson explained that children need rigorous treatment even when SCID is detected later. Legislators worried that Medicaid and insurance companies would suffer if they had to pay hundreds of thousands of dollars for stem cell transplants. “It doesn’t make sense to do nothing and let these babies die when you can screen, diagnose and potentially cure them,” Modell says. The foundation also provides key funding to Seattle Children’s Immunology Diagnostic Laboratory to help physicians around the world diagnose immune disorders and figure out the best way to treat them.įred Modell testified to Washington state’s Newborn Screening Advisory Committee in 2012 and read the committee a letter from a parent who said their son would be alive if he had been born in a state that screened for SCID. One mission of the foundation is to make SCID screening part of every newborn’s care, and it has given several states startup funds for the tests. They got help from a key ally: the Jeffrey Modell Foundation, which was started by Vicki and Fred Modell in 1987 after their 15-year-old son, Jeffrey, died of complications from immunodeficiency. Skoda-Smith, Torgerson and families affected by SCID went to Olympia over and over again to make their case for the test and the extra funding. Suzanne Skoda-Smith to make newborn screening for SCID available and to improve treatment options. Children like Eliana and her sister Madalena (on the far right) inspire the work of pediatricians like Dr. “Then they developed a terrific test of their own.” Testifying for changeīecause severe combined immunodeficiency (SCID) was not yet on the Washington state newborn screening panel, Eliana was not diagnosed until she became ill. ![]() “The state lab folks visited our lab and labs in Wisconsin, Massachusetts and New York to see how other states do SCID screening,” Skoda-Smith says. Glass started the political process to add funding to the governor’s budget while his staff figured out how to conduct the test. ![]() The test increases screening costs by about $8 per patient (approximately 8%). Still, Michael Glass, who directed the state lab at the time, was determined to bring SCID screening to Washington. “They were immediately on board, but they didn’t have the equipment or expertise to do the SCID test - or the funding to pay for it,” Torgerson says. About five years ago, Skoda-Smith and Torgerson proposed that the state’s screening lab add testing for SCID. “The key is to catch SCID before babies get ill,” Skoda-Smith says.Įvery baby born in Washington is screened for about two dozen serious health problems, giving doctors a chance to identify babies with those problems and deliver treatment early, when it can prevent complications and save lives. But “bubble-boy disease” is a misnomer - stem cell transplants in newborns younger than three and a half months can cure SCID about 94% of the time, according to a study in the New England Journal of Medicine that Skoda-Smith and Dr. It was featured in the 1976 movie The Boy in the Plastic Bubble, in which John Travolta played a patient confined to a bubble that blocked out germs. Suzanne Skoda-Smith Can cures be too costly? It was one of the most exciting days of my career.”ĭr. “Because the newborn screening test caught Ezra when he was still healthy, we knew we could almost certainly cure him. It was one of the most exciting days of my career.” ![]() “Once newborns get sick, their long-term survival rate drops to around 50% because they are too weak to do well during a stem cell transplant, which is the most common treatment,” Skoda-Smith says. “We were in disbelief - it was just a matter of time before he got really sick,” Dixon remembers.įour days later at Seattle Children’s, Drs. Suzanne Skoda-Smith and Troy Torgerson confirmed the diagnosis – and told the Dixons that Ezra was the first baby detected by a screening test for SCID that Seattle Children’s and the Washington State Department of Newborn Screening spent years bringing to Washington state.īabies don’t usually show signs of the disease until age four to six months,when the mother’s antibodies wear off and the baby gets a serious infection. Three days later, the Dixons’ pediatrician called to tell them Ezra tested positive for severe combined immunodeficiency (SCID), a life-threatening condition that left him unable to fight infections. When Rachel and Zach Dixon’s son Ezra was born, he looked and acted like the perfect, healthy baby every parent hopes for. Needle in a Haystack We brought a newborn screening test to Washington to catch a rare disorder when babies are still healthy enough to be cured.
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