October 28, 2020

Adults with Spina Bifida Face New Set of Challenges

Dr. Phil Gingrey, former U.S. Congressman and Senior Advisor to the District Policy Group at Faegre Drinker, has published a column in The Columbus Dispatch that brings awareness to spina bifida, a birth defect that occurs when the spine and spinal cord don’t form properly.

With October being National Spina Bifida Awareness Month, Dr. Gingrey uses the column to share his experiences with spina bifida and to bring attention to one of the nation’s most common permanently disabling birth defect.

In his column, “Adults with spina bifida face new set of challenges,” Dr. Gingrey highlights that the disease is now witnessing its first generation of adults, an incredible milestone, considering that the original designation of spina bifida in childhood meant that the vast majority did not survive even into adolescence. And while a generation of adults is “a milestone worth celebrating,” he cautions that with adulthood comes additional challenges associated with the disease.

Despite these challenges, Dr. Gingrey shares the promising results found by the spina bifida patient registry, created in 2003 by the Centers for Disease Control and Prevention. The registry provides clinicians, researchers, patients and families a “window” into what care models are most effective and what treatments are available. According to Dr. Gingrey, this information helps clinicians disseminate “best practices” and continue to improve quality-of-life and outcomes for people with this defect.

Dr. Gingrey also notes that while the registry is collecting important data on the disease, its funding is limited and as such, calls on Congress to boost funding for the program in fiscal year 2022.

To learn more, read the full column in The Columbus Dispatch.

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