Celebrating Diversity Within the Sickle Cell Community: Commitment, Innovation, Practice
Friday, October 12 • 3:15pm - 4:15pm
Strategies And Next Steps For Improving Sickle Cell Disease Care: Highlights From The Sickle Cell Disease Treatment Demonstration Program (SCDTDP)

Sign up or log in to save this to your schedule and see who's attending!


Dr. Suzette O. Oyeku- National Institute for Children’s Health Quality (NICHQ) and Division of Academic General Pediatrics, Children’s Hospital at Montefiore/Department of Pediatrics, Albert Einstein College of Medicine, Dr. Ifeyinwa Osunkwo- Levine Cancer Institute, Carolinas HealthCare System, Dr. Allison King- Department of Pediatrics, Division of Pediatric Hematology/Oncology and Program in Occupational Therapy, Washington University School of Medicine, Ms. Lisa Shook- Division of Hematology, Department of Pediatrics, Cincinnati, OH Cincinnati Children’s Hospital Medical Center; Division of Pediatrics, University of Cincinnati, College of Medicine, Dr. Rosalyn W. Stewart- Departments of Internal Medicine and Pediatrics, Johns Hopkins University School of Medicine, Dr. Marsha Treadwell- UCSF Benioff Children's Hospital Oakland, Department of Hematology/Oncology; Center for Inherited Blood Disorders,
Dr. Julie Kanter- Division of Pediatrics, Medical University of South Carolina, Charleston, South Carolina, USA, Dr. John Strouse- Division of Hematology, Department of Medicine, Duke University
Since the Sickle Cell Treatment Act of 2003, the Sickle Cell Disease Treatment Demonstration Program (SCDTDP), funded by the Health Resources and Services Administration (HRSA) has promoted best practice treatments, offered provider training, and increased access to high-quality care for individuals living with sickle cell disease in the US.
This session will highlight the impact and accomplishments of the 2013-2017 SCDTDP, lessons learned and recommendations as highlighted in programs 2017 Congressional Report to Congress. A panel including presenters from the National Coordinating Center and the five current Regional Coordinating Centers will share their collective results and describe their regional efforts to improve:
  • access to high quality knowledgeable care,
  • the use of disease modifying therapies (Hydroxyurea), and
  • and broaden knowledge base among providers for caring for patients, from childhood to adulthood with this disease.
Recommendations for SCD programs and initiatives, clinical care, and policy will be shared to bridge the program into its current iteration, introducing the additional 5th Regional Coordinating Center to join the project, covering the Southeast region of the United States.
Over the past three years, a regional model was established to increase: access to Hydroxyurea (a disease-modifying therapy); knowledgeable sickle-cell providers; and access to quality care. Regional learning collaboratives tracked progress through data collection and quality improvement efforts. Some brief highlights include:
Heartland Regional Coordinating Center (IA, KS, MO, NE) established telementoring programs for healthcare providers to address geographic disparities in care access.
Midwest Regional Coordinating Center (IL, IN, MI, MN, OH, WI) addressed gaps that affect care, including setting up satellite clinics that connected patients and local providers to staff and resources at larger medical systems with SCD expertise.
Northeast Regional Coordinating Center (DC, MD, NJ, NY, VA, PA, DE, WV, Virgin Islands, Puerto Rico) developed strong relationships with community-based organizations both in individual states and at the regional level to increase patient access to SCD care.
Pacific Regional Coordinating Center (AK, AZ, CA, ID, HI, OR, NV, WA, Guam) increased patient access to care with the opening of two new comprehensive centers for SCD care in key urban areas targeting larger concentrations of patients with SCD.
Southeast Regional Coordinating Center (AL, FL, GA, KY MS, NC, SC, TN), has been newly-funded for the 2017-2022 program cycle will be working to implement many of the lessons learned from their RCC colleagues as well as share innovation they are driving in the southeast region of the country.
The concerted efforts of SCDTDP have improved access to care, increased the use of Hydroxyurea among patients with SCD, and increased the number of providers knowledgeable about SCD. These efforts have led to the following accomplishments. Within this time, across the four regional learning collaboratives:
  • Nearly 11,000 patients with SCD are receiving care through SCDTDP regional networks, reflecting an increase of more than 3,000 from baseline
  • Nearly 7,000 patients with SCD are contributing information to electronic health registries
  • The number of patients reached increased by more than 3,000, hydroxyurea use increased across all regions, and
  • over 200 providers accessed telementoring services and strategies to improve care. The continuing national initiative builds off this previous work and increases the focus on ensuring the highest quality of care for patients living with sickle cell disease.
The regional collaborative approach has modest impact on meeting the overarching SCDTDP program objectives. Spread of innovative approaches identified in the SCDTDP to educate providers and enhance access to care are necessary to ensure continued improvements in the delivery of high quality care to individuals with sickle cell disease.


Mary Brown

President & CEO, PSCRC, Sickle Cell Disease Foundation of California

Suzette Oyeku MD, MPH, FAAP

Director, Academic General Pediatrics Fellowship, The Children’s Hospital at Montefiore

Roslyn W. Stewart, MD, MS, MBA

SiNERGe, Johns Hopkins University, School of Medicine

Lisa M. Shook, MA, MCHES

Instructor, STORM, Cincinnati Children’s Hospital Medical Center

Ifeyinwa Osunkwo, MD, MPH

EMBRACE, Levine Cancer Institute Division of Hematologic Oncology, Atrium Health

E. Donnell Ivy, MD, MPH

eivy@hrsa.gov, Health Resources and Services Administration

Taniya Varughese, MSOT, OTR/L

Heartland Sickle Cell Disease Network, Washington University School of Medicine

Friday October 12, 2018 3:15pm - 4:15pm

Attendees (19)