June 2022 Policy Memo

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Memo: June 25, 2022

The end of Q2 brings us to our mid-year point, which is hard to believe. Before we get there, however, we would like to take a moment to remember and honor our Co-Founder, Marqus Valentine. Marqus gained his warrior wings on June 22, 2020. His legacy continues to drive our policy work and direct our advocacy efforts. Thank you, Marqus, for bringing us all into your vision.

“Sick Cells is pleased to support the Sickle Cell Care Expansion Act of 2022. We hope this will be the first in a series of innovative approaches to improving care and quality of life for individuals living with sickle cell disease across the country.”

    • Sick Cell continues conversations with co-sponsors in the House and Senate to strengthen the bill and its programs. Our comments include the following:
      • Remove the phrase “control of sickle cell disease” to ensure clarity, reduce confusion, and avoid misinterpretation of the bill’s purpose
      • Promote diversity in scholarship and repayment grantees
      • Widen scholarship coverage beyond Doctors of Medicine (MD) and Doctors of Osteopathic Medicine (DO) to include Registered Nurses (RN), Physician Assistants (PA), care coordinators, and nontraditional providers
      • Ensure public reporting of results for community feedback
    • We encourage the SCD community to read the bill text and provide their input to the sponsoring offices.
  • Sick Cells joined a meeting with the HHS Office of Intergovernmental & External Affairs (IEA) to discuss federal opportunities for improvising SCD programing and funding. Our main asks were the following:
    • HHS and the Biden Administration should formally recognize sickle cell disease (SCD) as a prioritized public health issue.
    • 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.
  • Sick Cells & SCDAA co-hosted the SCD Legislation: Community Workshop to share information about current federal legislation on sickle cell disease. Email eandelson@sickcells.org for a copy of the presentation.
  • Sick Cells met with Senator Kyrsten Sinema’s office (D-AZ) to discuss the Personalized Medicine Caucus and how the Caucus can promote causes impacting sickle cell disease.
  • COMING SOON: This summer, Sick Cells will launch our State Legislation Repository as an additional resource of our Advocacy Map. With this information, you will be able to:
    • Filter by state
    • Search all SCD-related legislation from your state
    • Learn more by following links to state legislature websites & other sites
    • Stay tuned!

Please contact info@sickcells.org with questions.

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