Memo: November 30, 2021
RE: October & November 2021 Policy Update
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October and November have flown by! After a short all-team retreat in D.C. during the beginning of November, Sick Cells is ready to close out the year and excited to start on 2022 projects. First, see what we’ve been up to in Q4…
- Sick Cells prepped two advocates for a Wisconsin Medicaid meeting
- Meeting on November 3, 2021
- Committee discussed formulary placement for all SCD treatments
- Two Sick Cells Ambassadors & SCD Warriors shared their experiences living with SCD and seeking coverage
- Current formulary placement:
- Hydrea, Endari – not on PDL, PA required
- Droxia, Siklos, Hydroxyurea, Oxbryta – not on PDL
- Adakveo – No information available
- Recommended changes by committee: Move Droxia, Endari, and Siklos to the PDL. Oxbryta remains non-preferred, no mention of Adakveo, Hydrea, or Hydroxyurea.
- Sick Cells released a special memo on the Orphan Drug Tax Credit
- Find the memo here
- Sick Cells hosted two priority topic meetings for Ambassadors (PTMs)
- October: Driving Legislation in Your State, Part II
- Guest speakers: Mary Brown (Sickle Cell Disease Foundation), Gina Glass (Dreamsickle Kids Foundation), and Tonya Prince (bluebirdbio, former CEO of Sickle Cell Disease Association of Houston)
- November: Pitching to the Media
- Guest speaker: Holli Holson, Senior VP, Lippe Taylor
- To be a part of these discussions, join the Ambassador Program!
- October: Driving Legislation in Your State, Part II
- Sick Cells announces 2022 Ambassador Policy Forum dates
- The 2022 annual event will be held virtually on March 22 and 23rd. Attendees must be enrolled in the Sick Cells Ambassador Program.