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September 2021 Policy Memo

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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 info@sickcells.org with questions.

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