Statement on Complementary Pieces of Sickle Cell Disease Legislation

October 2, 2024

As National Sickle Cell Awareness Month closes, the Partnership is sharing these statements on complementary pieces of Sickle Cell Disease (SCD) legislation that advanced during the month of September.

Medicaid: Comprehensive Care and Treatment
Full Partnership Statement

On September 18, Senators Cory Booker (D-NJ), Tim Scott (R-SC), and Bill Cassidy (R-LA), introduced S.5097, the Sickle Cell Disease Comprehensive Care Act. This legislation builds on the Senators’ previous bipartisan work to support comprehensive access to care and treatment for individuals with SCD served by Medicaid and is the Senate companion to H.R. 7432. The program would incentivize state Medicaid programs to establish Health Homes for SCD and require dental and vision services in such a model. Medicaid Health Homes are a successful model that roughly half the states have used to reduce unnecessary expenditures, improve quality, and boost health outcomes. According to conversations with the Congressional Budget Office, this legislation is estimated to save several million dollars over a decade by keeping individuals with SCD out of the hospital. About half of the individuals with SCD in the United States are served by Medicaid. This legislation is one of the Partnership’s two federal legislative priorities for 2024.

Public Health SCD Treatment
Full Partnership Statement

On September 23, the House unanimously passed H.R. 3884, Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Presentation, and Treatment Act of 2023 (sponsored by Representatives Burgess (R-TX), Davis (D-IL), Carter (R-GA), and Lee (D-CA)). The legislation reauthorizes the critically important HRSA SCD Treatment Demonstration Program. In the Senate, S. 1852 is bipartisan legislation sponsored by Senators Tim Scott (R-SC), Cory Booker (D-NJ), and Raphael Warnock (D-GA), that passed unanimously out of the HELP Committee with bipartisan support on September 6, 2023. This legislation is one of the Partnership’s two federal legislative priorities for 2024.

Treatment Centers
Full Partnership Statement

On September 27, Senators Van Hollen (D-MD) and Booker (D-NJ), and Representatives Lee (D-CA), Davis (D-IL), and Adams (D-NC), reintroduced S. 5226/H.R. 9872, Sickle Cell Disease Treatment Centers Act, which could help to close care gaps and improve access to treatment. The Partnership appreciates these members’ efforts to improve access to care and treatment for Americans with SCD.