Louisiana Sickle Cell Commission public meetings in 2024
4 substantive meetings from 2024, with official agendas or minutes and plain-English summaries.
Louisiana Sickle Cell Commission
The Louisiana Sickle Cell Commission will meet to discuss updates on the Skylar-Cooper Database, transcranial Doppler access, and the Louisiana Standards of Care for sickle cell patients. The commission will also review recent legislation, including a federal SCD resolution and two state acts that develop training for nurses and school nurses. Planning for 2025 patient navigation efforts is also on the agenda.
- Update on the Skylar-Cooper Database (R. Majdoch)
- Review of transcranial Doppler access (E. Fulbright)
- Review of the Louisiana Standards of Care for SCD patients
- Legislation updates: HR 275 (SCD Resolution), HB 883/Act 748 (nurse training), HB 363/Act 375 (school nurse training)
- Planning for 2025 patient navigation
The commission reviewed preliminary sickle cell disease data and discussed expanding transcranial Doppler access. Members agreed to evaluate existing training materials for school nurses to satisfy legislative mandates. No formal votes were taken as a quorum was not present.
- Planned launch of registry website for January 1, 2025
- Agreed to conduct landscape assessment for transcranial Doppler access in northern/central regions
- Agreed to review Rapides parish and Tulane training presentations for school nurse mandates
- Scheduled 2025-26 Chair and Co-Chair elections for the first meeting of next year
Louisiana Sickle Cell Commission
This is a meeting notice for the Louisiana Sickle Cell Commission, scheduled for August 13, 2024, from 2:00 pm to 3:30 pm at Benson Tower in New Orleans. The agenda text is only procedural boilerplate, providing details on accessibility requests and written public comment submission, with no specific items listed for discussion or decision.
- Meeting location: Benson Tower, Room 1801-B, 1450 Poydras St., New Orleans, LA 70112
- Public comment accepted via email to [email protected] at least 24 hours before the meeting
- Accessibility accommodation requests due by email to [email protected] at least 2 weeks prior
The commission received progress reports on the development of the Sickle Cell Disease (SCD) registry and a medical ID bracelet pilot project. A representative announced that hospitals may administer gene therapy to Medicaid patients. No formal votes were taken as a quorum was not present.
Louisiana Sickle Cell Commission
The Louisiana Sickle Cell Commission is holding a regular meeting on May 14, 2024, from 2:00 to 3:30 pm. The agenda contains only procedural items: meeting logistics, accessibility accommodations, and instructions for submitting public comment. No substantive decisions or discussions are listed.
- Meeting location: 5340 Jewella Ave., Shreveport, LA 71109
- Zoom meeting ID: 964 8117 4410, passcode: mn8xBY
- Public comments must be submitted in writing to [email protected] at least 24 hours before the meeting
The Commission met to receive reports on the development of a sickle cell disease registry and updates on trait follow-up efforts. No formal votes were taken as a quorum was not present. The meeting included discussions on upcoming educational webinars and a legislative study resolution.
- No substantive decisions made due to lack of quorum
Louisiana Sickle Cell Commission
The Commission will hold elections for Chair and Vice-Chair and review its by-laws. The meeting includes reports on medical service delivery, patient navigation, and sickle cell disease legislation.
- Election of Chair and Vice-Chair
- Review and approval of By-Laws
- Report on the Skylar-Cooper Database
- Update on the Medical ID Bracelet Pilot Project
- Discussion of SCD Legislation
The Louisiana Sickle Cell Commission reelected its Chair and Vice Chair and updated by-law attendance requirements. Members received reports on the Skylar-Cooper database, telehealth access, and Medicaid gene therapy rebates.
- Approved August and November 2023 meeting minutes (unanimous)
- Approved amendment to by-laws regarding attendance requirements (unanimous)
- Reelected Erin Fulbright as Chair (unanimous)
- Reelected Donna Thaxton as Vice Chair (unanimous)