Senate HELP Committee Advances Legislation to Reauthorize SCD Demonstration Program

Members of the Senate Committee on Health, Education, Labor and Pensions (HELP Committee) voted last month to advance the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention and Treatment Act of 2023 (S.1852). If enacted, the legislation would reauthorize the Health Resources and Services Administration’s sickle cell disease (SCD) treatment demonstration program through fiscal year 2028.

The program seeks to increase the number of clinicians knowledgeable about SCD care, improve the quality of care provided to individuals with SCD, develop best practices for coordination of services during the pediatric to adult care transition, and improve care coordination with other providers.

S.1852 is one of several pieces of legislation sponsored by Sens. Cory Booker (D-N.J.) and Tim Scott (R-S.C.) to improve SCD care in the United States. Last year, Booker, Scott and Reps. Michael Burgess (R-Texas) and Danny Davis (D-Ill.) introduced the SCD Comprehensive Care Act to authorize the Centers for Medicare and Medicaid Services to develop a demonstration program for Medicaid beneficiaries to improve access to comprehensive outpatient care for individuals with SCD

While SCD Comprehensive Care Act legislation did not advance last session, AABB and its partners in the Sickle Cell Disease Coalition will continue to advocate for legislation that improves access to comprehensive outpatient care for individuals with SCD. Members of the blood and biotherapies community can help support these efforts by visiting AABB’s Advocacy Action Center and joining the AABB advocacy network.