Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action (2020)
Chapter: Appendix A: Public Meeting Agendas and Submissions to the Committee
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Appendix A
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Suggested Citation:
"Appendix A: Public Meeting Agendas and Submissions to the Committee." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
Appendix A
Public Meeting Agendas and Submissions to the Committee
FIRST PUBLIC MEETING
February 21, 2019
Keck Center of the National Academies
500 Fifth Street, NW
Washington, DC 20001
Open Session
| 1:15–1:20 p.m. | Opening Remarks; Conduct of the Open Session Marie Clare McCormick, M.D., Sc.D., Committee Chair |
| 1:20–2:30 | Charge to the Committee and Discussion ADM Brett P. Giroir, M.D., Assistant Secretary for Health, U.S. Department of Health and Human Services |
| CAPT David Wong, M.D., Medical Officer, Office of Minority Health, U.S. Department of Health and Human Services | |
| 2:30–2:50 | Epidemiology of Sickle Cell Disease in the United States Mary Hulihan, Dr.P.H., Health Scientist, Epidemiology and Surveillance Branch, Division of Blood Disorders, Centers for Disease Control and Prevention |
Suggested Citation:
"Appendix A: Public Meeting Agendas and Submissions to the Committee." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
| 2:50–3:10 | Clinical Complications and Care Delivery Alexis Thompson, M.D., M.P.H., Professor of Pediatrics, Ann & Robert H. Lurie Children’s Hospital of Chicago; President, American Society of Hematology |
| 3:10–3:30 | Therapeutic Approaches for Sickle Cell Disease James G. Taylor VI, M.D., Center for Sickle Cell Disease, Howard University |
| 3:30–4:00 | The Role of Advocacy in Improving the Patient Experience and Outcomes Shirley Miller, M.A., Patient Advocate, Atrium Health |
| Lakiea Bailey, Ph.D., Executive Director, Sickle Cell Community Consortium | |
| 4:00–4:30 | Public Comments |
SECOND PUBLIC MEETING
April 16, 2019
Keck Center of the National Academies
500 Fifth Street, NW
Washington, DC 20001
Open Session
| 9:30 a.m. | Welcome and Opening Remarks Marie Clare McCormick, M.D., Sc.D., Committee Chair |
| 9:45 | Panel 1: The Impact of Sickle Cell Disease on Patients, Families, and Communities Facilitator: Charmaine Royal, Ph.D., M.S., Committee Member |
| 9:45–9:50 | Panel Introductions |
| 9:50–10:00 | Derek Robertson, M.B.A., J.D., Patient Advocate; Co-Founder, Maryland Sickle Cell Disease Association |
| 10:00–10:10 | Adrienne Bell-Cors Shapiro, Co-Founder and Science Administrator, Axis Advocacy |
Suggested Citation:
"Appendix A: Public Meeting Agendas and Submissions to the Committee." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
| 10:10–10:20 | Tosin Ola, RN, BSN, Founder and President, Sickle Cell Warriors |
| 10:20–10:30 | Beatrice Bowie, Patient |
| 10:30–10:50 | Discussion |
| 10:50 | Break |
| 11:05 | Panel 2: Addressing the Needs of Sickle Cell Patients Across the Life Span Facilitator: Lori Crosby, Psy.D., Committee Member |
| 11:05–11:10 | Panel Introductions |
| 11:10–11:25 | Tracie Bullock Dickson, Ph.D., Education Program Specialist, Office of Special Education and Rehabilitative Services, U.S. Department of Education |
| Carmen Sánchez, Education Program Specialist, Office of Special Education and Rehabilitative Services, U.S. Department of Education | |
| 11:25–11:35 | Richard P. Weishaupt, J.D., Senior Attorney, Health and Human Services, Community Legal Services of Philadelphia |
| 11:35–11:45 | Wanda Whitten-Shurney, M.D., Chief Executive Officer and Medical Director, Sickle Cell Disease Association of America, Michigan Chapter, Inc. |
| 11:45 a.m.–12:05 p.m. | Discussion |
| 12:05 | Lunch |
| 12:45 | Panel 3: Health Care for Sickle Cell: Health Professional Awareness and Education Facilitator: Mary Catherine Beach, M.D., Committee Member |
| 12:45–12:50 | Panel Introductions |
Suggested Citation:
"Appendix A: Public Meeting Agendas and Submissions to the Committee." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
| 12:50–1:00 | Barbara Speller-Brown, D.N.P., P.N.P.-B.C., Director, SCD Transition Clinic; Lead Sickle Cell Translational Research APN, Children’s National Health System |
| 1:00–1:10 | Jeffrey Glassberg, M.D., Associate Professor, Emergency Medicine; Hematology and Medical Oncology, Mount Sinai |
| 1:10–1:20 | Charles Jonassaint, Ph.D., Assistant Professor of Medicine, Social Work and Clinical and Translational Science, Department of Medicine, University of Pittsburgh |
| 1:20–1:40 | Discussion |
| 1:40 | Break |
| 1:55 | Panel 4: Curative Therapies for Sickle Cell Disease Facilitator: Darius Lakdawalla, Ph.D., Committee Member |
| 1:55–2:00 | Panel Introductions |
| 2:00–2:10 | Betsy Myers, Ph.D., Program Director for Medical Research, Doris Duke Charitable Foundation |
| 2:10–2:20 | Mark Walters, M.D., Program Director, Alpha Stem Cell Clinic; Medical Director, Jordan Family Center for Bone Marrow Transplant & Cellular Therapies Research, University of California, San Francisco, Benioff Children’s Hospital of Oakland |
| 2:20–2:30 | Edward Benz, Jr., M.D., Executive Director, National Institutes of Health Cure Sickle Cell Initiative |
| 2:30–2:40 | Celia Witten, Ph.D., M.D., Deputy Director, Center for Biologics Evaluation and Research, U.S. Food and Drug Administration |
| 2:40–3:00 | Discussion |
| 3:00 | Public Comments |
Suggested Citation:
"Appendix A: Public Meeting Agendas and Submissions to the Committee." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
| 3:45 | Closing Remarks Marie Clare McCormick, M.D., Sc.D., Committee Chair |
| 4:00 | OPEN SESSION ENDS |
THIRD PUBLIC MEETING
June 3, 2019
Keck Center of the National Academies
500 Fifth Street, NW
Washington, DC 20001
Open Session
| 1:00 p.m. | Welcome and Opening Remarks Marie Clare McCormick, M.D., Sc.D., Committee Chair |
| 1:15 |
Panel 1: Organizing and Managing Care for Sickle Cell Disease Facilitator: Ellen Riker, Senior Vice President, CRD Associates Panelists: Brynn Bowman, M.P.A., Vice President of Education, Center to Advance Palliative Care Kathryn Sabadosa, M.P.H., Senior Research Director, The Dartmouth Institute; Cystic Fibrosis Foundation’s Quality Improvement Initiative Amy Shapiro, M.D., Chief Executive Officer and Co-Medical Director, Indiana Hemophilia and Thrombosis Center, Inc. Emily Riehm Meier, M.D., M.S.H.S., Pediatric Hematologist and Director, Sickle Cell Research, Indiana Hemophilia and Thrombosis Center, Inc. Donna McCurry, A.P.R.N., F.N.P.-B.C., Senior Nurse Practitioner and Program Manager, Comprehensive Sickle Cell Resource Center, Truman Medical Centers, Kansas City, Missouri |
| 2:25 | Break |
Suggested Citation:
"Appendix A: Public Meeting Agendas and Submissions to the Committee." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
| 2:35 |
Panel 2: Paying for Sickle Cell Disease Care Facilitator: Cheryl Damberg, Ph.D., Distinguished Chair in Health Care Payment Policy and Principal Senior Researcher, RAND Corporation Panelists: Sara van Geertruyden, J.D., Executive Director, Partnership to Improve Patient Care Marc Manley, M.D., M.P.H., Chief Medical Officer, Hennepin Health Stephen Cha, M.D., Chief Medical Officer, UnitedHealthcare Community & State Ruth Krystopolski, Senior Vice President, Population Health, Atrium Health Ronald M. Kline, M.D., Medical Officer, Patient Care Models Group, Center for Medicare and Medicaid Innovation, Centers for Medicare & Medicaid Services |
| 3:55 | Break |
| 4:05 |
Panel 3: Patient Perspectives on Health Care Access, Innovative Therapies, and Other Related Issues Facilitator: Marie Clare McCormick, M.D., Sc.D., Committee Chair Panelists: Shauna H. Whisenton |
| 5:10 | Public Comments |
| 5:30 | Closing Remarks Marie Clare McCormick, M.D., Sc.D., Committee Chair |
| 5:45 | OPEN SESSION ENDS |
Suggested Citation:
"Appendix A: Public Meeting Agendas and Submissions to the Committee." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
FOURTH PUBLIC MEETING
July 9, 2019
Parker H. Petit Institute for Bioengineering and Biosciences building
315 Ferst Drive, NW, Atlanta, GA 30332
Suddath Room
Open Session
| 9:30–10:15 a.m. | Hemophilia of Georgia Center for Bleeding and Clotting Disorders of Emory Christine L. Kempton, M.D., M.Sc., Director |
| 10:15–10:45 | SCD as a Public Health Issue and CDC Efforts Mary Hulihan, Dr.P.H., Health Scientist, Epidemiology and Surveillance Branch, Division of Blood Disorders, Centers for Disease Control and Prevention |
| 10:45–11:00 | Break |
| 11:00 a.m.–12:30 p.m. |
Patient Panel Facilitator: Marie Clare McCormick, Committee Chair Zyekevious (Zye) Barnes |
| 12:30–1:30 | Lunch |
| 1:30–2:00 | Travel to Site Visit Location |
| 2:00–3:15 | Site Visit: Grady Memorial Sickle Cell Center |
Suggested Citation:
"Appendix A: Public Meeting Agendas and Submissions to the Committee." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
FIFTH PUBLIC MEETING
September 11, 2019
Keck Center of the National Academies
500 Fifth Street, NW
Washington, DC 20001
Open Session
| 9:00–10:30 a.m. |
Panel: SCD Therapies: Products in Development, the Regulatory Process, and Considerations for Access Facilitator: Enrico Novelli, M.D., Committee Member Panelists: Bernard Dauvergne, Pharm.D., Executive Director, Addmedica Brian M. Elliott, M.D., Clinical Development Medical Director, Novartis Tony Ho, M.D., Executive Vice President of Research & Development, CRISPR Therapeutics Ted Love, M.D., President and Chief Executive Officer, Global Blood Therapeutics |
| 9:50–10:20 a.m. | Closing Remarks and Discussion |
Suggested Citation:
"Appendix A: Public Meeting Agendas and Submissions to the Committee." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
Suggested Citation:
"Appendix A: Public Meeting Agendas and Submissions to the Committee." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
Suggested Citation:
"Appendix A: Public Meeting Agendas and Submissions to the Committee." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
Suggested Citation:
"Appendix A: Public Meeting Agendas and Submissions to the Committee." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
Suggested Citation:
"Appendix A: Public Meeting Agendas and Submissions to the Committee." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
Suggested Citation:
"Appendix A: Public Meeting Agendas and Submissions to the Committee." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
Suggested Citation:
"Appendix A: Public Meeting Agendas and Submissions to the Committee." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
Suggested Citation:
"Appendix A: Public Meeting Agendas and Submissions to the Committee." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press.
doi: 10.17226/25632.
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