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Sickle Cell Program

Program Overview

Sickle Cell Disease (SCD) affects more than 3,000 patients and families in North Carolina, with approximately 80 infants diagnosed by newborn screening every year. In 2013, Community Care of North Carolina formed a task force to look at what could be done to better serve this population.

After review of CCNC Medicaid data, consultation with providers, and consultation with the public health sickle cell program, these issues were found:  

  • Patients not seeing their primary care clinician (PCC) regularly
  • Patients not seeing their hematologist
  • Many adult patients are uninsured
  • Many patients are a good distance from our specialty centers in NC 

All of these issues lead to poor outcomes for patients and higher cost to the health system.  

Emergency departments (EDs) expressed difficulty with managing pain medications for sickle cell patients who seem to repeatedly come to the ED. Because of these concerns, CCNC saw an increased opportunity for care coordination and systems change in the population of children, youth, and adults with sickle cell disease.

To address these issues, CCNC prioritizes the population with sickle cell disease for practice quality improvement and care management. CCNC's Call Center receives emergency department referrals and ensures those patients are connected with care management. 



Age 0-20 1,556
Age 21+ 1,334
Total 2,890

Data from December 2017


The Goal: Implementation of best practice in primary care and systems for co-management among PCC's, specialists, and emergency departments



The North Carolina Sickle Cell Syndrome Program of the Division of Public Health conducts “newborn screening follow up, care coordination, referrals to clinical and related services, and sickle cell educational materials and information” (2018).

The Duke University Sickle Cell research projects, two of which are grant-funded, are identifying barriers to care and disseminating clinical decision-support tools.  “The tools are intended to increase primary care and emergency department clinicians comfort level in providing care to patients suffering from sickle cell disease. These tools are now available in an app.” (2018)


Sickle Cell Program Objectives

  • To implement best practice in primary care
  • To enhance co-management between hospitalists, specialists and primary care clinicians  
  • To build systems for transition from pediatric to adult health care 
  • To decrease fragmentation of care 
  • To collaborate with the Chronic Pain Initiative (CPI) to meet the needs of sickle cell patients 
  • To partner with the Child Health Accountable Care Collaborative (CHACC) to facilitate co-management for pediatric patients with sickle cell disease
  • To partner with Public Health and their programs for sickle cell patients 


Who Is Involved

CCNC Pediatrics Sickle Cell Workgroup includes:  

  • PCC’s 
  • Hematologists from across the state
  • Public Health Sickle Cell Program (including Educator/Counselors and CBO’s)
  • CCNC Care Managers
  • CCNC Chronic Pain Initiative 
  • CCNC Pharmacy program
  • CCNC Call Center
  • ED representatives



  • CCNC Pediatrics convened a large Sickle Cell Work Group that includes DPH Sickle Cell Program, hematologists from the major academic centers, CCNC Network PCC’s, CCNC Chronic Pain Staff, and CHACC (Child Accountable Care Collaborative) staff.
  • Clinicians and hematologists were convened to develop the co-management guidelines
  • Public Health SC Educator/Counselors and CBO’s (Community Based Organizations) have been trained to identify and contact the patient’s care manager. CCNC Care Managers in all the networks have contact info for Educator/Counselors for their region(s). 


Click here for information about the CCNC & Duke partnership to disseminate the sickle cell guidelines