Legislation to Improve SCD Data Collection and Care Moves Through Congress

On February 28, Sens. Tim Scott (R-SC) and Cory Booker (D-NJ) introduced the Sickle Cell Disease Surveillance, Prevention, and Treatment Act of 2018. This legislation will authorize a program within the Centers for Disease Control and Prevention (CDC) allowing states, academic institutions, and non-profit organizations to apply for grants to gather information on the prevalence of SCD, and the health outcomes, complications, and treatment experienced by patients. This bill also reauthorizes SCD treatment grants awarded by the Health Resources and Services Administration (HRSA), which will help improve access to care and quality of care for individuals with SCD.

“While we know that many people living with SCD are unable to access quality care, policymakers and health-care providers lack the data on just how widespread this need is, and where it is greatest,” American Society of Hematology (ASH) President Alexis A. Thompson, MD, MPH, said in a statement commending the legislation. “By expanding efforts to better understand the prevalence and treatment needs of people with this disease, and increasing access to quality care, the legislation introduced today by Sens. Scott and Booker has the potential to dramatically improve the quality of life of the 100,000 Americans with SCD. ASH is committed to working with the Senate to ensure passage of this vital legislation and collaborating with CDC and HRSA in our quest to conquer SCD.”

Similar legislation, sponsored by Reps. Danny Davis (D-IL) and Michael Burgess (R-TX), passed the House of Representatives on February 26.

Source: American Society of Hematology press release, February 28, 2018.