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July 2022 Policy Memo

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Memo: July 27, 2022

It’s hard to believe we are already halfway through the year! This month, Sick Cells focused on supporting external initiatives and planning our policy work for the remainder of the year. Read more to see what we were up to.

  • Sick Cells joined a meeting with the HHS staff members to discuss federal opportunities for improving SCD programming and funding. Key HHS staff included Steven T. Lopez, Counselor to the Secretary of HHS; and Kimberly Miller-Tolbert, Policy Advisor. Our main asks were:
    • HHS should convene State Medicaid Directors from across all 50 states and the District of Columbia to educate them about sickle cell disease (SCD). By equipping the Medicaid Directors with increased knowledge about SCD, we hope to see a reduction in access barriers and improvement of appropriate coverage decisions in their state.
    • CMS should publish a follow-up T-MSIS data report card on Medicaid & CHIP beneficiaries with SCD. (Find the 2020 report card here.) Reports like this help address regional health disparities and provide the SCD community and other stakeholders with needed data.
  • Our July Ambassador Priority Topic Meeting focused on the advocacy of letter writing.
    • We discussed writing letters for various purposes to legislators, insurers, educators/teachers, medical providers, and medical administrators.
    • Read more or join the Ambassador Program here.

Please contact info@sickcells.org with questions.

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