Welcome to the latest Sick Cells Policy Update. This memo provides updates on federal and state policy developments affecting the sickle cell disease (SCD) community, along with advocacy opportunities and recent organizational activities.
The Sickle Cell Disease Partnership has submitted a comment letter to CMS for the Medicaid Work Requirements Interim final rule comment period.
On June 1, 2026, the Centers for Medicare & Medicaid Services (CMS) issued a rule that requires certain Medicaid enrollees to show they are working, volunteering, or participating in other “qualifying activities” for at least 80 hours each month. This rule takes effect July 31, 2026 and must be implemented by state Medicaid offices by January 1, 2027.
As written, this rule may negatively affect the sickle cell disease (SCD) community. Sick Cells is taking action and asks the community to join us.
Sick Cells sent this letter to Secretary Kennedy including 56 signatures from organizations within the SCD community. This letter requests the reinstatement of the Division of Blood Disorders and preservation of the SCDC program.
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.
