Today kicks off Newborn Screening Awareness month! For years, we lobbied in Washington D.C. to add Severe Combined Immunodeficiency (SCID) to the national newborn screening panel. Without proper diagnosis, life expectancy for SCID patients is only one year. We appeared before the US Congress and continued to advocate--we were determined to help and educate as many families as possible.
In 2007, we agreed to share the costs of a pilot program to screen newborns for SCID in partnership with the state of Wisconsin. The pilot program began in January 2008 and 10,000 newborns were tested. Based on the success of the pilot, Wisconsin officially adopted SCID for Newborn Screening. This was just the beginning!
We kept sharing our story, speaking to families, and lobbying whenever we could. In 2010, the US Secretary of Health and Human Services recommended SCID to the National Core Panel. It would be the first addition in twelve years! We were thrilled, until we found out that this was just a recommendation—we would still need to convince each state individually. So, we kept pushing.
Finally, in 2018, NBS for SCID was implemented in all 50 states, Washington D.C., Puerto Rico, and the Navajo Nation. By the end of 2023, nearly 42 million babies will have been screened in the United States alone!
There are now several countries conducting population screening for SCID, including Austria, Belgium, Brazil, Denmark, Germany, Iceland, Ireland (ADA SCID only), Israel, Lebanon, New Zealand, Netherlands, Norway, Russia, Singapore, Sweden, Switzerland, and Taiwan. Pilot programs are currently underway in Chile, China, Czech Republic, France, Japan, Poland, Saudi Arabia, South Korea, Spain, Turkey, Ukraine, and Vietnam.
Stay tuned this month for more updates and stories about our Newborn Screening efforts worldwide!