SICKLE CELL
THE EMERGING MANAGEMENT OF Sickle Cell Anemia in Louisville
Shawn D. Glisson, MD, MA, FACP, FASCO
In the United States, sickle cell disease is most prevalent among African Americans. It is the most common inherited blood disorder, affecting 70,000 to 80,000 individuals nationwide. This disease is estimated to occur in one in 500 African Americans and one in 1,000 to 1,400 Hispanic-Americans. Approximately 500 people in the Louisville metropolitan area have the disorder, and the number is growing, as patients are now able to live longer. Until recently, people with sickle cell disease were not expected to survive childhood. In the 1970s, the median mortality age was 14. But today, due to preventive drug treatment, improved medical care, and hydroxyurea( an antitumor drug that stimulates the production of fetal hemoglobin), many more than half of sickle cell patients will now live into young adulthood.
A concerted effort in health care delivery in Louisville has helped to make these gains possible locally and regionally. These achievements were largely accomplished through the individual efforts of the University of Louisville( UofL) Department of Pediatrics, Norton Healthcare( NHC) and The Sickle Cell Association of Kentuckiana( SCAK). Over the past decade in Louisville, it was recognized that the success, increased lifespan and improved quality of life for sickle cell patients would depend on enhanced coordination of care regarding issues pertinent to them moving into adulthood. The forward-thinking and collaboration of the professionals of the aforementioned organizations have created a more meaningful medical home for adult sickle cell patients in Louisville. Despite current treatments for sickle cell including antibiotics, pain management, blood transfusions and hydroxyurea, patient wellness can still be threatened by episodic pain crises. These complications are influenced by various unpredictable and diverse factors such as the weather and individual comorbid conditions, demanding continued monitoring and support of this young population’ s distinct needs and challenges.
In acknowledgment of past efforts and strides made with sickle cell anemia patient care, Ashok B. Raj, MD,( principal investigator, PCORI’ s St3P UP and Pediatric Sickle Cell Program) and I are thrilled to announce that Louisville has been designated one of the nation’ s study cities for the Patient-Centered Outcomes Research Project. Out of many national applicants, we were selected to be part of this esteemed project.
As of August 3, 2018, this multilayered project protocol in the management of sickle cell anemia from pediatric to adult transition was implemented. We will be using this federally funded Patient-Centered Outcomes Research Institute( PCORI) grant to improve upon the joint efforts of UofL and NHC. This intensive
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