Marcia Boyle: “Louisiana Should Offer Newborn Screening for Severe Combined Immune Deficiency”

The Advocate received a letter from advocate Marcia Boyle this week. She wrote:

More than half the states in the U.S. offer an inexpensive newborn screening test for a rare immune disorder that can save millions of dollars and prevent heartbreak for some families. However, Louisiana is not among these states, as it stopped offering this screening in 2010 after implementing a brief pilot program, putting both newborns and its coffers at risk.

For most parents, having a newborn is a busy but happy time in their lives. But for some, it’s a time of agony when they watch their apparently healthy infant get a life-threatening illness a few weeks or months after birth. Unfortunately, parents in Louisiana whose children have Severe Combined Immune Deficiency (SCID) face this scenario simply because the state lacks a simple newborn screening test.

SCID is one of the most serious of a group of over 250 rare conditions in which the immune system is missing or deficient. Those with primary immune deficiencies are susceptible to getting severe infections from diseases that are merely minor nuisances for most of us. SCID is also known as “Bubble Boy Disease” after David Vetter, a young boy who had to live his 12 years in a plastic “bubble” to prevent him from contracting infections. It can be detected from the same simple pinprick of blood that all newborns receive for other screenings. If diagnosed and treated within several months of birth, there is a high probability that a baby will be effectively “cured.”

The test costs only about $7 to $9 for each infant tested — a small price to pay to prevent the $700,000 to $4 million spent for emergency treatment for just one infant who is not diagnosed. When babies with this disorder are on Medicaid – a not unlikely scenario given that the state has one of the highest Medicaid rates in the country — those costs fall on the state. All of the states surrounding Louisiana have recognized the value of the test and offer this screening.

The Immune Deficiency Foundation (IDF), a national nonprofit patient advocacy organization that is working to have SCID screenings throughout the U.S., urges Louisiana lawmakers to adopt the U.S. Department of Health and Human Services’ 2010 recommendation that SCID be included in all newborn screening programs.

Ironically, the Immune Deficiency Foundation is holding our biennial national conference in New Orleans in June this year, where it will focus on SCID and the need for infant screenings. I, along with SCID families and physicians that treat babies at serious risk of dying because they didn’t get this simple test, urge Louisiana legislators and political leaders to step up to provide SCID screenings. It’s not only the right thing to do, it’s cost-effective.

Marcia Boyle

President, Immune Deficiency Foundation

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