WHAT HAPPENED, FIRST: Congress passed sickle cell disease legislation in 2018. House Bill HR2410, the Sickle Cell Disease Treatment Act of 2017, was co-sponsored by Representatives Burgess and Davis. It passed the House in February while Sick Cells and 44 other sickle cell advocates were in Washington, DC. In February, Senators Scott and Booker introduced the Senate companion bill S.2465 the Sickle Cell Disease Treatment Act of 2018.
WHAT WE DID: Throughout the bills’ journey through the House and Senate, Sick Cells recruited patient groups to sign onto letters of support and meet with their legislators to discuss the need for bill.
WHAT HAPPENED, NEXT: The Senate companion bill passed the Senate in October. It was, then, returned to the House for reconciliation due to language change.
WHAT WE DID: When this occurred, Sick Cells formed and led a task force to engender SCD patient and rare disease patient support. Sick Cells also worked closely with various stakeholders including Sen. Bookers’ and Scotts’ offices, and the Sickle Cell Disease Association America (SCDAA) to get the bill on the House voting calendar during the final weeks of lame duck in 2018.
THE RESULT: The Bill was signed into law on December 11, 2018.