Continuing and Professional Education

September is National Sickle Cell Awareness Month–a time to raise awareness of this group of genetic red blood cell disorders that affect more than 100,000 people in the US and eight million people worldwide. According to the National Institutes of Health, Sickle Cell Disease (SCD) is caused by inherited genetic mutations that affect haemoglobin, the major protein responsible for carrying oxygen in red blood cells. These mutations cause red blood cells to take on a hardened, sickle shape, making it more difficult to pass through smaller blood vessels and leading to clogs in these vessels.

Thanks to infant screening, modern treatments, and the tireless efforts of patients, researchers, doctors, and advocates, people with SCD have seen their life expectancy increased from 14 to 73 years in the last five decades. But people with SCD still live with lots of uncertainty: vaso-occlusive crises (pain caused by blood vessels clogged with rigid sickle cells) can erupt without warning and sickle cell patients are at a higher risk for stroke.

“Adult patients with sickle cell disease, nationally, are neglected because this was a childhood disease where suddenly the patients started living longer because of good childhood care,” says Dr. Wally R. Smith, the Director of VCU’s Sickle Cell Disease Program. Under his leadership, VCU Health has been part of the clinical trial for Lyfgenia (Bluebird Bio) since 2021. “Treating a child with sickle cell disease really is focused on helping them survive childhood… Treating patients in adulthood is about treating pain… and that’s a totally different animal than treating children.”

To complicate matters further, not all people with SCD are eligible to receive the blood transfusions, bone marrow transplants, and gene therapies that have been developed to treat it. Despite the FDA approving two gene therapy treatments for sickle cell disease in late 2023, less than 100 patients in the United States received the treatments in the first year of approval.

“Care in the United States healthcare system is often fragmented… [leaving] patients to coordinate their own care.” Dr. Sarah Hartigan, then the Associate Chair of Quality and Safety, worked with Dr. Smith to build the VCU Adult Sickle Cell Medical Home in 2018. “In that kind of system, patients have poorer outcomes and often feel unsatisfied with the care that they receive.  And that’s especially a problem for people with sickle cell disease.”

To build awareness and improve health outcomes, VCU’s Sickle Cell Disease Program has teamed up with VCU Continuing and Professional Education & LEDstudio to create the Sickle Cell Care Coordination for Achieving Patient Empowerment (SCCAPE) series. These online, asynchronous courses are designed to introduce community healthcare workers, and others in the field, to Sickle Cell Disease and review the types of disease, the complications of the disease, the pain, treatments, and how patients move from paediatric to adult services.

The first course in this series, Introduction to Sickle Cell Disease, is open for enrollment.