Clinicians and researchers from around the country gathered in Memphis Friday for the 2019 Frank M. Norfleet Forum for the Advancement of Health to discuss sickle cell disease research and treatment. They looked back at how the disease has developed over the last century and what the future holds for those born with it and those who are trying to cure it.
Themed “More than 100 years of Sickle Cell Disease: Development of Novel Therapies,” the daylong conference at the National Civil Rights Museum was organized and led by Kenneth Ataga, MD, director of the Center for Sickle Cell Disease at the University of Tennessee Health Science Center and the Memphis Consortium for Sickle Cell Disease and Non-Malignant Hematology Research. Dr. Ataga joined UTHSC in 2018 and is recognized nationally and internationally as an expert clinician and researcher in the field of sickle cell disease.
Progress has been made in diagnosing and treating sickle cell disease, the panelists said.
Improvements in drug therapies, screening for the disease at birth, better supportive care, developing gene therapy, and ongoing research have improved outcomes for those with the disease.
“A lot of work still has to be done,” Dr. Ataga told the group.
He said it is necessary to improve access to comprehensive care by specialists, increase advocacy for those with the disease, improve the infrastructure for clinical trials, and promote drug discovery and testing of novel compounds to treat the disease.
Health disparities, including poverty and lack of access, prevent many patients around the world from getting the care that could improve their quality of life.
Panelists included researchers from Boston Children’s Hospital, Albert Einstein College of Medicine, Duke Comprehensive Sickle Cell Center, St. Jude Children’s Research Hospital, Cincinnati Children’s Hospital, and Vanderbilt University.
The first Norfleet Forum was held in 1980 at UTHSC. The annual conference was created to focus on the improvement of health in the community, the state, and around the world through discussion of health policies and developments. It was funded by a gift to the university in honor of Memphis businessman Frank M. Norfleet through the Community Foundation of Greater Memphis. Other recent topics have included kidney disease in the African American community, childhood obesity, and alcohol use disorders.
Jon McCullers, MD, chair of pediatrics at UTHSC and pediatrician in chief at Le Bonheur Children’s Hospital, said the Norfleet Forum allows the university to improve scientific and community knowledge on relevant health care issues and to foster collaboration among researchers that could result in moving science forward.
“Norfleet allows us to bring in 10 or 15 outside speakers, which is a tremendous thing that you don’t see at a local or regional conference,” he said. “It’s unique and it’s very much appreciated. “