Newborn Screening Awareness Month – Our History

September is Newborn Screening Awareness month! We’re looking forward to sharing more about our lobbying efforts and advocacy this month, starting with our history and involvement in securing Newborn Screening in all 50 states and beyond.

For seven long years, we lobbied in Washington to encourage public awareness for PI and add SCID to the Newborn Screening panel. Without diagnosis, life expectancy for SCID patients is only one year. There was an inexpensive and efficient test to diagnose, treat, and possibly save these babies who would otherwise likely die before their first birthday. We were unwilling to let babies continue to die from a treatable disease.

We appeared before the US Congress to advocate for Newborn Screening for SCID for years and years. We weren’t satisfied with the status quo! We were determined to help the next family and wanted to help educate the world.

In 2007, we agreed to share the costs of a pilot program to screen newborns for SCID along with the state of Wisconsin. The pilot program began in January 2008 and tested 10,000 newborns over the course of the program. Based on the success of the pilot, Wisconsin officially adopted SCID for Newborn Screening. But that 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 to add SCID to their Newborn Screening panels.

So, we kept pushing. Finally, in 2018, Newborn Screening for SCID was implemented in all 50 states, Washington DC, Puerto Rico, and the Navajo Nation. Today, nearly 40 million babies have been screened in the United States.

In addition to the United States, several countries are conducting population screening for SCID, including Brazil, Denmark, Germany, Iceland, Israel, Lebanon, New Zealand, the Netherlands, Norway, Singapore, Sweden, Switzerland, and Taiwan.  Belgium is scheduled to add SCID to the panel for population screening, and pilots are underway in Canada, Chile, China, Finland, France, Ireland, Italy, Japan, Poland, Saudi Arabia, South Korea, Spain, Turkey, United Kingdom, and Vietnam. 

Stay tuned this month for more updates and stories about our Newborn Screening efforts worldwide!

Pictured below:
Dawson Bornheimer, the first newborn to test positive for SCID during our Wisconsin pilot program in 2008. Today, he is cured and playing high school football!