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Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action (2020)

Chapter: Appendix C: Committee and Staff Biographies

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Suggested Citation:"Appendix C: Committee and Staff Biographies." 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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Appendix C

Committee and Staff Biographies

COMMITTEE

Marie Clare McCormick, M.D., Sc.D. (Chair), is the Sumner and Esther Feldberg Professor of Maternal and Child Health (Emerita), a professor of pediatrics, and a pediatrician with a second doctorate in health services research. Her research has focused on the effectiveness of perinatal and neonatal health services, and the effect they have on the health of women and children. Dr. McCormick’s research has also given particular attention to the outcomes of premature infants. She has been a senior investigator on the evaluations of national demonstration programs such as the Robert Wood Johnson Foundation National Perinatal Regionalization Program. She was also an investigator for the federal Healthy Start Program. In addition, she has provided substantial input to the design and conduct of Infant Health and Development Project, which is the largest, multisite randomized trial of early childhood educational intervention. Dr. McCormick received her M.D. and Sc.D. from Johns Hopkins University and her B.A. from Emmanuel College. Dr. McCormick is a member of the National Academy of Medicine and a recipient of the David Rall Medal.

Gilda Barabino, Ph.D., is the president of the Olin College of Engineering. She previously served as the Daniel and Frances Berg Professor and dean of engineering at The City College of New York’s (CCNY’s) Grove School of Engineering. Prior to joining CCNY, Dr. Barabino served as the associate chair for graduate studies and a professor in the Wallace H. Coulter Department of Biomedical Engineering and the vice provost for academic diversity

Suggested Citation:"Appendix C: Committee and Staff Biographies." 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.
×

at Georgia Tech and Emory University. She has also held appointments at Northeastern University. Dr. Barabino is an elected member of the National Academy of Engineering and a member of the National Academies’ Committee on Women in Science, Engineering, and Medicine. Dr. Barabino’s laboratory focuses on vascular and orthopedic tissue engineering research. She also works to find novel therapeutic strategies that will improve the health of those who suffer from sickle cell disease and related complications. Dr. Barabino received her B.S. in chemistry from Xavier University of Louisiana and her Ph.D. in chemical engineering from Rice University.

Mary Catherine Beach, M.D., M.P.H., is a professor of medicine at the Johns Hopkins University School of Medicine. She holds a joint appointment in health and behavior and society at the Johns Hopkins Bloomberg School of Public Health. Dr. Beach’s scholarship about respect and relationships in health care encompasses both empirical and conceptual dimensions. Dr. Beach is currently conducting research on the theoretical foundations of respect and the impact of physician attitudes and patient–physician communication on patients in the primary care setting, in the treatment of HIV and substance abuse, and in the treatment of sickle cell disease. Dr. Beach is on the editorial board for Patient Education and Counseling and on the advisory board for Communication in Medicine.

Lori E. Crosby, Psy.D., is a professor of pediatrics and a clinical psychologist. She is the co-director of innovations in community research and co-directs the Cincinnati Clinical Translational Science Award’s Community Engagement Core. Dr. Crosby’s research focuses on community engagement, self-management, quality improvement, sickle cell disease (SCD), health disparities, and patient-centered outcomes and has been funded by the National Institutes of Health, the Agency for Healthcare Research and Quality, and the Patient-Centered Outcomes Research Institute. She is an elected fellow of the American Psychological Association and a faculty member in the Department of Pediatrics at the University of Cincinnati (UC) College of Medicine, the Division of Behavioral Medicine at Cincinnati Children’s Hospital Medical Center, and the Department of Hematology/Oncology at UC Health (adjunct). Dr. Crosby previously served as a member of a National Heart, Lung, and Blood Institute workgroup that developed 2020 Healthy People objectives for individuals affected by SCD and an American Psychological Association on Advancing Practice. Dr. Crosby received her Psy.D. from Wright State University and completed her pediatric residency/internship at Cincinnati Children’s Hospital Medical Center.

Amy Dawson, M.D., M.P.H., FAAFP, is the associate director and the medical director at the Fort Wayne Medical Education Program, a family

Suggested Citation:"Appendix C: Committee and Staff Biographies." 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.
×

medicine residency program with dual accreditation by both the Accreditation Council for Graduate Medical Education and the American Osteopathic Association. After earning her M.D. from The Ohio State University, Dr. Dawson trained in family medicine at the Fort Wayne Medical Education Program. Following her training, she spent 3 years in private practice at Brooklyn Medical Associates, followed by 4.5 years as the medical director of the Matthew 25 Health and Dental, and almost 4 years practicing in Quito, Ecuador. In July 2012, she moved back to Indiana and joined the faculty of the Fort Wayne Medical Education Program as the medical director of the Family Medicine Clinic, training new family medicine doctors to provide great health care now and in the future.

Darius Lakdawalla, Ph.D., is the Quintiles Chair in Pharmaceutical Development and Regulatory Innovation at the University of Southern California (USC), where he sits on the faculties of the School of Pharmacy and the Sol Price School of Public Policy. He also serves as the director of research at the Leonard D. Schaffer Center for Health Policy and Economics at USC, one of the nation’s premier health policy research centers. Dr. Lakdawalla is currently a research associate at the National Bureau of Economic Research and serves as an associate editor for the Review of Economics and Statistics, the Journal of Health Economics, and the American Journal of Health Economics. He is considered an expert in the field of health policy and economics, with his research focusing primarily on the economics of risks to health, the value and determinants of medical innovation, the economics of health insurance markets, and the industrial organization of health care markets. Dr. Lakdawalla received his Ph.D. in economics from the University of Chicago and his B.A. in mathematics and philosophy from Amherst College.

Bernard (Bernie) Lopez, M.D., M.S., is the executive vice chair in the Department of Emergency Medicine, a team emergency physician for the Philadelphia Flyers, the associate dean of diversity and community engagement at the Sidney Kimmel Medical College, and the associate provost of diversity and inclusion at Thomas Jefferson University. Dr. Lopez’s research interests include clinical and basic science aspects of acute vaso-occlusive sickle cell crisis in adult emergency department patients and unconscious bias and its role in health disparities. Dr. Lopez received his M.D. from the Sidney Kimmel (formerly Jefferson) Medical College.

Jonathan D. Moreno, Ph.D., is a David and Lyn Silfen University Professor of Ethics at the University of Pennsylvania in the Department of Medical Ethics and Health Policy. He is the author of several books on ethics. Dr. Moreno received his Ph.D. from Washington University and his B.A.

Suggested Citation:"Appendix C: Committee and Staff Biographies." 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.
×

from Hofstra University. Dr. Moreno is a member of the National Academy of Medicine.

Enrico M. Novelli, M.D., M.S., is an associate professor of medicine at the University of Pittsburgh and an expert in sickle cell disease (SCD). He received his fellowship training in Hematology/Oncology at the University of Pittsburgh Medical Center (UPMC). Dr. Novelli has served as the director of the UPMC Adult Sickle Cell Program since 2007 and as the chief of the section of benign hematology at UPMC since 2018. Dr. Novelli’s research focus is on vascular dysfunction and biomarker development in SCD, with a special interest in the area of cognitive dysfunction, for which he has received uninterrupted National Institutes of Health (NIH) funding. He has numerous publications in SCD and has served as a scientific reviewer for many journals, NIH, and the American Heart Association. He is a member of several American Society of Hematology (ASH) committees. Dr. Novelli has been actively interested in advancing hematological care in low-income countries and has led the first two hemophilia symposia in Tanzania under the auspices of a partnership among the World Federation of Hemophilia, the Tanzanian Hemophilia Chapter, and the Hemophilia Center of Western Pennsylvania. In 2015, he was elected as co-chair of the ASH African Newborn Screening and Early Intervention Consortium in SCD. This ambitious initiative aims to bring together institutions in sub-Saharan Africa to introduce standardized practices for screening and early intervention therapies (e.g., penicillin prophylaxis and vaccinations) with the goal of decreasing childhood mortality rates for SCD.

J. Andrew Orr-Skirvin, Pharm.D., BCOP, is an associate clinical professor at Northeastern University in the Department of Pharmacy and the Department of Health Systems Sciences. He specializes in hematology/oncology pharmacy practice. Dr. Orr-Skirvin’s research is in supportive care, which includes pain management, nausea and vomiting, neutropenic fever, long-term complication, and growth factor support. He received his Pharm.D. from The University of Texas at Austin and The University of Texas Health Science Center at San Antonio. He received his B.S. in pharmacy from Oregon State University.

Ifeyinwa (Ify) Osunkwo, M.D., M.P.H., is the director for the Sickle Cell Disease Enterprise at Atrium Health’s Levine Cancer Institute, serving approximately 1,400 adults and 400 children living with sickle cell disease (SCD). She is a clinical associate professor of medicine at the University of North Carolina at Chapel Hill and a life-span hematologist who specializes in health services outcomes in SCD with a specific focus on transition from pediatrics to adult care chronic pain, health literacy, and patient

Suggested Citation:"Appendix C: Committee and Staff Biographies." 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.
×

engagement. She is also an implementation science researcher with a specific focus on SCD. Dr. Osunkwo has more than 25 years of experience in clinical management and population health for SCD as it relates to chronic disease management, quality improvement, and program development. She is a principal investigator on the Education and Mentoring to Bring Access to CarE Network, a regional collaborative focused on increasing access to care for individuals living with SCD in the southeast United States, and leads the Sickle Cell Trevor Thompson Transition Project, a multicenter study to compare the effectiveness of a structured education-based transition program with or without peer mentoring on transition outcomes among emerging adults with SCD. Dr. Osunkwo serves on the board of the Sickle Cell Adult Providers Network and on several committees for the American Society of Hematology (ASH), namely the ASH Communications Committee, the ASH Cardiopulmonary and Renal Guidelines subcommittee, and on the editorial board for The Hematologist and Hematology News. Dr. Osunkwo received her M.D. from the University of Nigeria and her M.P.H. from the Johns Hopkins Bloomberg School of Public Health. She completed her clinical training at the University of Medicine and Dentistry of New Jersey (pediatric residency) and Columbia University (fellowship in pediatric hematology/oncology and bone marrow transplant).

Susan Paulukonis, M.P.H., M.A., is the program director of the California Rare Disease Surveillance Program at Tracking California, a partnership between the Public Health Institute and the California Department of Public Health. Her expertise is in using population surveillance methodologies to gather information on those affected by rare, non-reportable diseases, determining the incidence and prevalence of such disorders and their outcomes and impact. This work also identifies and highlights those resources that may be needed to improve quality of life for affected populations. The primary focus of her work is sickle cell disease, but the program has also conducted population surveillance in amyotrophic lateral sclerosis, Parkinson’s disease, and human health impacts of exposure to cyanotoxins. Dr. Paulukonis was responsible for management of California’s Registry and Surveillance System for Hemoglobinopathies and Public Health, Epidemiology, Research and Surveillance in Hemoglobinopathies programs prior to her direction of the state’s Sickle Cell Data Collection program. Dr. Paulukonis received her M.P.H. from the University of California, Berkeley, and her M.A. and B.A. from San Francisco State University.

Charmaine Royal, Ph.D., M.S., is an associate professor of African and African American studies, biology, global health, and family medicine and community health at Duke University. She also has appointments in the Duke Initiative for Science & Society, the Kenan Institute for Ethics, and the

Suggested Citation:"Appendix C: Committee and Staff Biographies." 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.
×

Social Science Research Institute, where she directs the Center on Genomics, Race, Identity, Difference and the Center for Truth, Racial Healing & Transformation. Dr. Royal conducts research on scientific, clinical, ethical, social, and policy implications of genetic and genomic research globally, and leads or is involved in a variety of domestic and international projects on sickle cell disease and sickle cell trait. She received her Ph.D. in human genetics and M.S. in genetic counseling from Howard University, and completed postgraduate training at the National Human Genome Research Institute of the National Institutes of Health.

Kim Smith-Whitley, M.D., M.P.H., is the director of the Comprehensive Sickle Cell Center, clinical director of the Division of Hematology, and a professor of pediatrics at the Children’s Hospital of Philadelphia. She holds the Elias Schwartz, M.D., Endowed Chair in Hematology. Her research focus is on sickle cell disease (SCD)-related complications, particularly infections and pulmonary issues as well as improving long-term therapies and the transition process from pediatric- to adult-focused care. Through multiple projects and advocacy efforts she hopes to increase access to high-quality care and foster the development of new therapeutics including curative therapies for children and adults with SCD. She is the initiator of two programs at the Children’s Hospital of Philadelphia (CHOP): a short-stay at the Hematology Acute Care Unit and The Blue Tie Tag program to recruit blood donors for pediatric transfusions. Dr. Smith-Whitley received her M.D. from The George Washington University School of Medicine then completed residency training at Children’s National Hospital and pediatric hematology–oncology fellowship at CHOP.

STAFF

Henrietta Awo Osei-Anto, M.A., M.P.P., is a senior program officer in the Health and Medicine Division at the National Academies of Sciences, Engineering, and Medicine. She previously led the payment and health system transformation Collaborative within the National Academy of Medicine’s Leadership Consortium for a Value & Science-Driven Health System. Before joining the National Academies, Ms. Osei-Anto completed a fellowship at Ithaca College where she taught courses on inequalities in the U.S. health care system. She has worked with leaders of multiple sectors of the health care industry on issues of quality improvement, efficiency, and equity in the health care system. She was a senior researcher at the Health Research and Educational Trust of the American Hospital Association, where she managed externally funded projects to implement and evaluate programs to improve quality and reduce cost in the care delivery setting. In this role, she developed tools to help health care leaders effectively prepare their

Suggested Citation:"Appendix C: Committee and Staff Biographies." 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.
×

organizations for key health reform provisions pertaining to readmissions, bundled payment, accountable care organizations, and patient-centered medical homes. Ms. Osei-Anto has also served as a consultant to pharmaceutical companies and patient advocacy groups to help them strategically engage in federal health policies. Ms. Osei-Anto earned a bachelor’s degree in economics and international studies from Illinois Wesleyan University; a master’s degree in public policy and a certificate in health administration and policy from the University of Chicago; and is currently a doctoral candidate in health policy at Brandeis University.

Karen M. Anderson, Ph.D., is a senior program officer in the Health and Medicine Division at the National Academies of Sciences, Engineering, and Medicine. She is the director of the Roundtable on the Promotion of Health Equity and recently directed a consensus study on the potential links among housing, health, and homelessness. She also worked on consensus studies relating to LGBT health and HIV/AIDS. Dr. Anderson earned a Ph.D. in experimental psychology from the University of Pittsburgh. Her professional experiences include positions involving the intersection of social sciences, public health research, and public policy, including time as a staff member in the U.S. House of Representatives for the Committee on Education and Labor, and as a faculty member of the Department of Pediatrics at Howard University. Dr. Anderson has expertise in health disparities, homelessness, adolescent development, reproductive health issues, HIV/AIDS, and LGBT issues.

Cyndi Trang, B.S., is a research associate in the Health and Medicine Division at the National Academies of Sciences, Engineering, and Medicine. She is working on several National Academies studies on sickle cell disease; evidence-based opioid prescribing; and decarbonization, as well as workshops on veterans’ health access, biomarkers to establish impairment, and advancing diagnostic excellence. She has also assisted with numerous National Cancer Policy Forum workshops ranging from topics of cancer care in low-resource areas to patient navigation in cancer care. Prior to joining the National Academies, Ms. Trang was a cancer research fellow at the National Cancer Institute, where she worked in the Gene Regulation and Chromosome Biology Laboratory. In addition to her experience in public health policy and laboratory research, Ms. Trang also has experience in the medical field as a former chief scribe at Novant Health. Ms. Trang graduated as an Honors Program Scholar from Marymount University, magna cum laude, with a major in biology, minor in physical science, and a concentration in molecular biology. She is currently pursuing her master’s degree in patient safety and health care quality at Johns Hopkins University.

Suggested Citation:"Appendix C: Committee and Staff Biographies." 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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Suggested Citation:"Appendix C: Committee and Staff Biographies." 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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Suggested Citation:"Appendix C: Committee and Staff Biographies." 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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Suggested Citation:"Appendix C: Committee and Staff Biographies." 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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Suggested Citation:"Appendix C: Committee and Staff Biographies." 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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Suggested Citation:"Appendix C: Committee and Staff Biographies." 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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Suggested Citation:"Appendix C: Committee and Staff Biographies." 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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Suggested Citation:"Appendix C: Committee and Staff Biographies." 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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Suggested Citation:"Appendix C: Committee and Staff Biographies." 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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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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