Memo: September 30, 2022
September brought us back to the full swing of things! From working on exciting new legislation for sickle cell disease to a whirlwind of Sickle Cell Awareness Month presentations, the Sick Cells team has been hard at work. Here are our September highlights:
1. Sick Cells President, Ashley Valentine, attended a Senate event to officially mark the introduction of the Sickle Cell Disease Treatment Centers Act.
a. Ashley shares, “The Sickle Cell Disease Treatment Centers Act of 2022 offers a bold, new, system-wide approach to structuring comprehensive care for Sickle Cell Disease. For a community that has lacked full medical and social support, relevant data, and needed auxiliary services for so long, this legislation illustrates what stakeholders might achieve through a collaborative approach with dedicated funding.”
b. Read the full press release here.
2. Sick Cells participated in a meeting with key staff at the Centers for Medicare & Medicaid Services (CMS) as part of the Sickle Cell Disease Partnership
a. The group introduced the partnership and our policy priorities and spoke about CMS programs that support sickle cell disease and how programs could be expanded and refined.
3. Sick Cells met with key staff at the Centers for Disease Control & Prevention (CDC).
a. The meeting focused on current CDC programs for sickle cell and opportunities for future collaboration.
b. CDC released the most recent issue of Vital Signs, focusing on sickle cell disease for the first time.
4. Sick Cells staff presented at Cayenne Wellness Center’s 14th Annual Sickle Cell Disease Seminar on legislative updates.
a. The presentation was in collaboration with SCDAA and focused on current legislation and how to get involved.