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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