Policy & Legislation

This month’s highlights include a presentation for HRSA and a meeting with CMMI.

This month’s highlights include an HHS and ASH data roundtable, new legislation for SCD, the submission of witness statements to a Congressional hearing, and more.

This month’s highlights include an HHS and ASH data roundtable, new legislation for SCD, the submission of witness statements to a Congressional hearing, and more.

Sick Cells submitted the following statement for the record to the House Energy and Commerce Committee Hearing on June 14, 2023. This statement details our comments on the introduction of the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023.

This month’s highlights include touchpoints with the FDA, CMCS, CDC, and CMMI, and a Kentucky Medicaid meeting.

This month’s highlights include prepping advocates for a few Medicaid coverage decision meetings and signing on to a couple of group letters.

This month’s highlights include a recap of Rare Disease Week, the final report from the National SCD Policy Forum, and conversations with HHS and the CDC about the importance of data.

With new legislators getting settled on the Hill, February brought a flurry of activity and opportunity. The Sick Cells team kept busy preparing for the National SCD Policy Forum (March 2023) and connecting with federal agencies and Hill offices to learn about their 2023 plans. This month’s highlights include the launch of event registration, two meetings with CMMI, an HHS event, and a few meetings on the Hill.

This month’s highlights include an event announcement, meetings with CMMI and the E&C Committee, and more.

This month’s highlights include working on wrapping up items from 2022 and planning exciting things for 2023.

This month’s highlights include conversations with staffers, a Wisconsin Medicaid meeting, and an HHS roundtable.

This month’s highlights include a meeting with AHRQ and prep work for a Medicaid coverage meeting.