FOR IMMEDIATE RELEASE
June 15, 2023
WASHINGTON – Today, Senator Tim Scott’s (R-S.C.) and Senator Cory Booker’s (D-N.J.) Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023 passed out of the Senate Committee on Health, Education, Labor and Pensions. This legislation reauthorizes the Health Resources and Services Administration’s Sickle Cell Disease Treatment Demonstration Program beyond fiscal year 2023 through fiscal year 2028.
Sickle cell disease (SCD) is an inherited blood disorder predominantly effecting African Americans, Latinos and other minority groups. Individuals with SCD have a significantly lower life expectancy than the overall population. According to the Centers for Disease Control and Prevention, sickle cell affects 100,000 individuals in the United States.
“Sickle cell continues to affect thousands of Americans, oftentimes those without access to specialized care,” said Senator Scott. “This bill makes strides in ensuring those affected have access to the treatment they need to manage their healthcare and eventually future cures for this deadly disease.”
The Sickle Cell Disease Treatment and Demonstration Program:
- Increases the number of clinicians knowledgeable about SCD care;
- Improves the quality of care provided to individuals with SCD;
- Develops best practices for coordination of services during the pediatric to adult care transition; and
- Improves care coordination with other providers.The legislation is endorsed by the Sickle Cell Disease Partnership, National Association of Sickle Cell Centers, American Society of Hematology, Sickle Cell Disease Association of America, Inc, and Sick Cells.
The full text of the legislation can be viewed here.
Background:
Senator Scott’s leadership on Sickle Cell Disease awareness includes:
- Introducing and signing into law the Sickle Cell and Other Heritable Blood Disorders Research Surveillance, Prevention and Treatment Act in 2018;
- Creating bipartisan legislation to dedicate September as Sickle Cell Awareness month;
- Questioning the FDA nominee on the future of CRISPR technology in finding a cure for Sickle Cell Disease; and
- Designating February 28th as Rare Disease Day to promote awareness for all rare diseases, such as sickle cell.