NC SCDC is a state-level sickle cell disease (SCD) surveillance program that addresses the limited knowledge about the epidemiology of SCD in NC and the U.S. and generates actionable data to improve health outcomes for historically marginalized people with SCD. The program is in partnership with the Department of Health and Human Services, Division of Public Health (Co-PI Weeks), Piedmont Health Services and Sickle Cell Agency, and Atrium Health. SCD is a complex, inherited blood disorder that leads to 30-year shortened life expectancy, severe acute and chronic pain, organ damage, and stroke. SCD affects millions of people throughout the world, and it is particularly common among those whose ancestors were from the Sub-Saharan Africa, some parts of South America, the Caribbean, Central America and Mediterranean countries.  It is estimated that around 100,000 people, mainly African Americans, live with SCD in the US.  

Limited access to specialized healthcare, discrimination surrounding appropriate pain management as well as a lack of healthcare provider knowledge and awareness about the disease and its complications exacerbate the burden of the disease. Additionally, the economic implications of SCD further widen income disparities, creating barriers and limiting opportunities for people living with the disease.  

The lack of a national surveillance registry remains a major limiting factor to addressing healthcare needs and health inequities for people with SCD in the U.S. To address this gap, the Centers for Disease Control and Prevention is funding state-level surveillance programs. As of September 2023, NC SCDC is one of 16 programs funded nationally. The NC SCDC program aims to generate and disseminate surveillance findings informing clinical practice, research, and policy at state and national levels. NC SCDC surveillance data have been used to inform statewide initiatives and quality improvement efforts at sickle cell centers, support grant applications, support conversations with a legislative assistant, and prepare manuscripts for publication. 

For example, the NC SCDC program collaborated with the Medical Research Committee of the Governor’s Appointed NC Council on Sickle Cell Disease and Related Disorders on an initiative to improve emergency department (ED) care for people with SCD in the state. The initiative includes the implementation of an ED pain management toolkit to improve management of vaso-occlusive pain episodes. Additionally, a screening and referral tool is integrated to identify unmet social determinants of health needs for individuals with SCD, referring them to the state's sickle cell syndrome program. NC SCDC provided ED utilization tables ranked by the top 20 facilities with the highest number of ED visits between 2013 and 2019 to guide the team in prioritizing implementation efforts and support requests to institutional leadership using institution-specific data.

Kayle said another area that researchers now better understand is the birth prevalence of SCD in NC. “Using our surveillance data, we now know that, on average, 87 babies with SCD are born annually in NC.  SCD is more common in the African American or Black population with one in every 363 Black, non-Hispanic births in NC has SCD. Approximately 50% of the birth mothers of these infants reside in five counties of the state (Mecklenburg, Wake, Guilford, Cumberland, and Durham counties) and 72% of birth mothers resided in counties with high or very high overall social vulnerability, where housing and transportation was a major issue,” Kayle said. She worked with DUSON’s partners at the Division of Public Health and Piedmont Health Services and Sickle Cell Agency and created public education materials available in English and Spanish  to increase awareness on births with SCD NC and provide information on resources available for these infants and their families. 

Continued research, community engagement, strong collaboration among diverse stakeholders including state and local health departments, community-based organizations, clinicians, and researchers are critical to tackle the complex challenges of SCD. More importantly, bringing people living with SCD at the heart of Kayle and her team’s efforts are key. She said at NC SCDC, they engage their community partners, including Piedmont Health Services and Sickle Cell Agency, people with SCD and their families, and the Governor’s Appointed NC Council on Sickle Cell Disease and Related Disorders, not only by disseminating findings from our program, but especially in what questions to ask of the data in the first place. “Our community partners participate on an advisory council for NC SCDC and are a major voice in determining the analyses priorities for our program,” Kayle said.  

The exact number of people living with SCD remains unknown. Whereas reliable and comprehensive data are essential for addressing the challenges of SCD. Policy makers and different organizations need data on the prevalence of SCD in specific communities, healthcare utilization patterns, the number of children born with SCD, where births occur, and the quality of care received by people with SCD. She explains that healthcare professionals need data for planning and allocating resources to provide care for people living with SCD, identifying gaps in care, and developing tailored interventions to improve care. She explained it can also be used to identify areas where care can be improved and to develop policies that promote quality care.  “This is where the NC SCDC can make significant impact- implementing statewide surveillance and disseminate aggregate level findings regarding the epidemiology and healthcare utilization patters of SCD in the state,” Kayle said.

Kayle said her work gives her deep meaning as she collaborates with her team and partners to translate data into action that has the potential to influence and ultimately improve the lives of people living with SCD. “As a nurse, it has been a privilege to be at the bedside every day and have the opportunity to make a difference one patient at a time. Through this work, I am humbled and honored to have the opportunity to make a difference at the population level as we work to address some of the health inequities and social justice issues associated with sickle cell disease,” Kayle said.

She said social determinants of health drive 80% of health outcomes. “If we want to make a significant impact and improve the lives of historically marginalized populations, we need to focus beyond health care delivery and address the health inequities and social justice issues that impact people’s lives and health,” Kayle said. That is why health equity lies at the heart of my work in NC SCDC program.  I am committed to address social determinants of health through highlighting how factors such as proximity to healthcare service, and transportation availability influence the health of individuals with SCD. This is because reliable data allows us to identify and address disparities in access to quality healthcare for individuals with living with SCD. Through my research and teaching, I am committed to equip and inspire the next generation of nurses the need to embrace evidence-based decision making, and, just and equitable care that upholds and respects the multiple needs of individuals living with SCD. 

Kayle is a double DUSON alumna (MSN 2005 and PhD 2017). She rejoined DUSON as a faculty member in 2019 and is a native of Beirut, Lebanon.