Spina bifida, a birth defect that threatens millions of Americans, is the focus of a House resolution, H. Res. 1664, introduced this week aimed at both raising public awareness of the disease and urging the Secretary of Health and Human Services (HHS) to launch a federal effort to improve access to health care facilities for individuals with disabilities.

    “Our resolution raises awareness of the ongoing, life-long medical and psychosocial needs of individuals living with spina bifida,” said Congressman Chris Smith, a longtime healthcare advocate who co-chairs the Spina Bifida Caucus in Congress. “It also recognizes the importance of increasing access to health care through facilities and examination rooms easily accessible and usable to individuals living with spina bifida and other disabilities.”

    Today marks the beginning of Spina Bifida Awareness Month. Spina bifida, the nation’s most common permanently disabling birth defect, occurs when a baby’s spine fails to develop and close properly during prenatal development. Recent research has shown that the estimated number of Americans living with all forms of spina bifida is as many as 166,000. The resolution urges the Secretary of HHS to create a National Advisory Committee on Access to Health Care for Individuals with Disabilities to ensure interagency coordination of efforts to address this permanent birth defect.

    Smith worked with the Spina Bifida Association (SBA), the only national voluntary health organization working on behalf of the many individuals who live with all forms of spina bifida and their families, as well as Caucus co-chair, Rep. Bart Stupak (MI-01), to introduce this legislation.