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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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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
Jennifer Nsenkyire
Teonna Woolford
Jacques (Jackie) Jackson

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
Bryan Belcher
Marquis Belton
Gregory (Greg) Green
Jonathan Hamilton
Elijah Henry
Michael Thomas

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.
×
Page 419
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.
×
Page 420
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.
×
Page 421
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.
×
Page 422
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.
×
Page 423
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.
×
Page 424
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.
×
Page 425
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.
×
Page 426
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Sickle cell disease (SCD) is a genetic condition that affects approximately 100,000 people in the United States and millions more globally. Individuals with SCD endure the psychological and physiological toll of repetitive pain as well as side effects from the pain treatments they undergo. Some adults with SCD report reluctance to use health care services, unless as a last resort, due to the racism and discrimination they face in the health care system. Additionally, many aspects of SCD are inadequately studied, understood, and addressed.

Addressing Sickle Cell Disease examines the epidemiology, health outcomes, genetic implications, and societal factors associated with SCD and sickle cell trait (SCT). This report explores the current guidelines and best practices for the care of patients with SCD and recommends priorities for programs, policies, and research. It also discusses limitations and opportunities for developing national SCD patient registries and surveillance systems, barriers in the healthcare sector associated with SCD and SCT, and the role of patient advocacy and community engagement groups.

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