Washington, D.C. — U.S. Representative Eugene Vindman (Va.-07) introduced legislation to restore staff and funding for the Centers for Disease Control and Prevention’s Sickle Cell Data Collection (SCDC) program, which was once the nation’s only public health surveillance system dedicated to collecting comprehensive data on individuals living with sickle cell disease.
The Candis King Hope for Sickle Cell Families Act would reinstate funding and federal workers previously cut from the SCDC program and safeguard it from future elimination without congressional approval. The legislation authorizes $10 million in funding for the program for fiscal year 2026.
“Sickle cell disease affects thousands of families across Virginia, yet the data collection programs needed to improve care and save lives were abruptly dismantled under the Trump administration,” said Vindman. “The Candis King Hope for Sickle Cell Families Act — named in honor of my constituent, who died at just 15 years old from complications of sickle cell disease — would restore a proven program that helped researchers and policymakers understand the real-world impact of this disease. By reinstating funding and requiring congressional approval before the program can be eliminated again, this bill ensures accountability and a renewed federal commitment to families living with sickle cell disease.”