Sickle Cell Disease in Social Security Disability Evaluations (2025)
Chapter: Appendix A: Public Meeting Agendas
Appendix A
Public Meeting Agendas
COMMITTEE ON SICKLE CELL DISEASE IN SOCIAL SECURITY DISABILITY EVALUATIONS
Virtual Public Session
Tuesday, November 19, 2024 (12:30–1:30 PM ET)
SESSION 1—OPEN
| 12:30–12:40 |
Welcome and Introductions Paul Volberding, Committee Chair Vince Nibali, Technical Expert, Office of Medical Policy, Social Security Administration (SSA) |
| 12:40–1:00 |
Social Security Administration Overview Vince Nibali, Technical Expert, Office of Medical Policy, Social Security Administration |
| 1:00–1:30 |
Questions and Discussion Jennifer Koop, Committee Vice Chair, Moderator Committee Members and SSA Staff |
| 1:30 |
Adjourn Public Session |
COMMITTEE ON SICKLE CELL DISEASE IN SOCIAL SECURITY DISABILITY EVALUATIONS
Virtual Public Session
Friday, December 20, 2024 (1:00–4:00 PM ET)
WEBINAR 1: Hospitalization and Sickle Cell Disease (SCD)
| 1:00–1:10 |
Welcome Remarks and Introductions Paul Volberding, Committee Chair Jennifer Koop, Committee Vice Chair |
| 1:10–1:30 |
Sponsor Remarks, Social Security Administration Michael Goldstein, Director of the Office of Medical Policy, Social Security Administration Andrea Bento, Technical Expert in the Office of Medical Policy, Social Security Administration |
| 1:30–2:30 |
Session I: Living with SCD Moderators Coretta Jenerette, Committee Member Marilyn Baffoe-Bonnie, Committee Member Panelists Tristan Lee, Professional model, actor, fashion designer, and patient advocate for SCD; SCD Warrior Christelle Salomon, Health Policy and Education Analyst, University of California, San Francisco Benioff Children’s Hospitals; SCD Warrior Sharee Turpin, Patient Navigator, University of Rochester Medicine; SCD Warrior Nikia K. Vaughan, Executive Director, Maryland Sickle Cell Disease Association; SCD Caregiver Teonna Woolford, CEO, Sickle Cell Reproductive Health Education Directive; SCD Warrior Q & A with Panelists |
| 2:30–2:45 |
Break |
| 2:45–3:45 |
Session II: Hospitalization in SCD Moderators Jeffrey Glassberg, Committee Member Ashley Jenkins, Committee Member Panelists Mary Hulihan, Health Scientist, Centers for Disease Control and Prevention Caroline E. Freiermuth, Associate Professor of Clinical Emergency Medicine, University of Cincinnati College of Medicine Ruchi Doshi, Hospital Medicine Specialist and Assistant Professor of Medicine, Duke University Titilope Fasipe, Assistant Professor of Pediatrics and Co-Director, Sickle Cell Program, Baylor College of Medicine Q & A with Panelists |
| 3:45–3:55 |
Summary Statements |
| 3:55–4:00 |
Closing Remarks Paul Volberding, Committee Chair Jennifer Koop, Committee Vice Chair |
COMMITTEE ON SICKLE CELL DISEASE IN SOCIAL SECURITY DISABILITY EVALUATIONS
Virtual Public Session
Friday, February 7, 2025 (1:00–4:00 PM ET)
WEBINAR 2: Pain Management and Sickle Cell Disease (SCD)
| 1:00–1:10 |
Welcome Remarks and Introductions Paul Volberding, Committee Chair Jennifer Koop, Committee Vice Chair |
| 1:10–2:15 |
Session I: Living with and Managing Pain in SCD Moderator Shirley Johnson, Committee Member |
|
Panelists Teanika Hoffman, Sickle Cell Coalition of Maryland Carolyn Rowley, Cayenne Wellness Center Q & A with Panelists |
|
| 2:15–2:30 |
Break |
| 2:30–3:45 |
Session II: Pain Management in SCD Moderators Trish Kavanagh, Committee Member Martha Kenney, Committee Member Mechanisms of Pain Presentation Daniel Sop, Virginia Commonwealth University Panelists Amanda Brandow, Medical College of Wisconsin Pat Carroll, Johns Hopkins University Wally Smith, Virginia Commonwealth University Lara Zador, Henry Ford Health Q & A with Panelists |
| 3:45–3:55 |
Summary Statements |
| 3:55–4:00 |
Closing Remarks Paul Volberding, Committee Chair Jennifer Koop, Committee Vice Chair |
COMMITTEE ON SICKLE CELL DISEASE IN SOCIAL SECURITY DISABILITY EVALUATIONS
Virtual Public Session
Friday, February 21, 2025 (10:00 AM–1:00 PM ET)
WEBINAR 3: Functional Outcomes of Sickle Cell Disease (SCD)—The Whole-Person Experience
| 10:00–10:05 |
Welcome Remarks and Introductions Jennifer Koop, Committee Vice Chair |
| 10:05–11:15 |
Session I: Functional Outcomes in SCD Moderator Cece Calhoun, Committee Member Panelists Payal Desai, Atrium Health Kelly Harris, Washington University in St. Louis Eboni Lance, Kennedy Krieger Institute/Johns Hopkins University Lakeya McGill, University of Pittsburgh Jean Leclerc Raphael, Texas Children’s/Baylor College of Medicine Q & A with Panelists |
| 11:15–11:30 |
Break |
| 11:30–12:45 |
Session II: SCD and Daily Life: Lived Experience Moderator Jerlym Porter, Committee Member Panelists Omini Ewah, OBIA Naturals; SCD Warrior Golda Houndoh, PCORI; SCD Warrior Vesha Jamison, American Red Cross; Caretaker Q & A with Panelists |
| 12:45–12:55 |
Summary Statements |
| 12:55–1:00 |
Closing Remarks Jennifer Koop, Committee Vice Chair |
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