Giving Tuesday is November 30. Sick Cells can do the work we do thanks to your support! Donate today to help support our programs and mission.


September 2021 Policy Memo

Home / Policy & Legislation / September 2021 Policy Memo

Memo: September 30, 2021

RE: September 2021 Policy Update


September was an active month for policy! Between balancing events for Sickle Cell Awareness Month, getting excited for reconciliation season & finishing up Q3 activities, our team was busy. Read on to see what we were up to this month.

  • Sick Cells participated in two state Medicaid meetings
    • Minnesota Drug Formulary Committee Meeting – September 8 
      • Written comments submitted by Sick Cells, oral comments made by Rae Blaylark, CEO of Sickle Cell Foundation of Minnesota, and one other advocate
      • Comments urged them to make Siklos preferred & remove all prior authorization requirements for SCD treatments
      • No change to state Medicaid formulary
    • Pennsylvania P&T Committee Meeting – September 14 & 15
      • Written comments submitted by Sick Cells, one advocate trained to provide oral comments
      • Comments urged them to make all SCD treatments preferred & remove all prior authorization requirements
      • No change to state Medicaid formulary
  • Sick Cells signed three letters from other organizations
    • Alliance for Aging Research letter
      • Request to reduce out-of-pocket costs in Medicare Part D in the FY22 reconciliation package
      • Signed along with 131 other organizations
    • CMMI Letter of Support
      • Letter affirming that the Center for Medicare and Medicaid Innovation (CMMI) “provides a robust research and development platform to test and evaluate new payment and delivery approaches…”
    • American Society of Hematology Medicaid Demo Letter
      • Request to Congress to develop a Medicaid demonstration program for SCD treatment, with a focus on young adults
  • Sick Cells hosted a workshop on “Driving Legislation in your State” as an Ambassador Program Priority Topic Meeting (PTM). This month’s meeting touched on:
    • State policy vs federal policy
    • Local organizing
    • State-level SCD programs
    • Our October PTM will be a deep-dive into recent SCD state legislation across the country. 

To join the Ambassador Program & get involved in our policy work, please fill out this form.

Please contact with questions.

Stay in the Know

Sign up for our newsletter!