Teal on the Hill

Ask the Appropriations Subcommittee for Labor, Health, and Human Services to Fund the National Spina Bifida Program at the CDC

THE ISSUE: The only place in the federal government that is studying this complex condition for children and adults is the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention.

THE ASK:  Ask the members of the Appropriations Subcommittee to support an $8 million budget for the National Spina Bifida Program at NCBDDD. The program has been level-funded at $6 million for the past six years. With increased funding, we will:

  1. Fund research on sudden unexplained death among adults in the Spina Bifida (SB) community
  2. Determine the number of people living with SB in the US
  3. Develop studies on social determinants of health within the Spina Bifida registry
  4. Create a protocol for improving the health of children who have Spina Bifida with
    hydrocephalus
  5. Research barriers to transition to adult care and analyze models for care

STATUS: At last year’s budget cycle, the House of Representatives passed the increase; however, it did not pass in the Senate. With your help, we hope to gain an increase for Fiscal Year (FY) 2021.