Sickle Cell Disease in Social Security Disability Evaluations: Pain and Treatment Settings (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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