Policy & Legislation

On May 20, 2025, Sick Cells joined a sign-on letter to Congress urging them to reject the reconciliation package as it is due to the impact on the SCD community.

On June 23, 2025, Sick Cells joined a sign-on letter to the Senate urging them to reject proposals in any budget reconciliation bill, which would cut critical healthcare programs, including Medicaid, and limit access to Marketplace plans.

This memo provides updates on the recent Drug Utilization Review Board (DURB) and Pharmacy and Therapeutics Committee (P&T) meetings.

This month’s highlights include the Food and Drug Administration Advisory Committee and updates on federal priorities.

This month’s highlights include National Sickle Cell Awareness Month and updates on federal priorities.

This month’s highlights include a presentation for HRSA and a meeting with CMMI.

This month’s highlights include an HHS and ASH data roundtable, new legislation for SCD, the submission of witness statements to a Congressional hearing, and more.

This month’s highlights include an HHS and ASH data roundtable, new legislation for SCD, the submission of witness statements to a Congressional hearing, and more.

Sick Cells submitted the following statement for the record to the House Energy and Commerce Committee Hearing on June 14, 2023. This statement details our comments on the introduction of the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023.

This month’s highlights include touchpoints with the FDA, CMCS, CDC, and CMMI, and a Kentucky Medicaid meeting.

This month’s highlights include prepping advocates for a few Medicaid coverage decision meetings and signing on to a couple of group letters.

This month’s highlights include a recap of Rare Disease Week, the final report from the National SCD Policy Forum, and conversations with HHS and the CDC about the importance of data.