Big changes coming with launch of Rena N. Grant Sickle Cell Center at MUSC

The namesake of the Medical University of South Carolina’s new Rena N. Grant Sickle Cell Center was known for being so dedicated to her job with the South Carolina House of Representatives’ Ways and Means Committee that she kept working even when she was in the hospital being treated for pain crises.

Grant, who was also the first African American to serve as director of legislation for the committee, made a big impression on lawmakers. Rep. Gilda Cobb-Hunter, one of three legislators who spoke at a ceremony launching the new center, said Grant was like a daughter to her. 

 

"You really didn't know how much she suffered from a pain standpoint. Rena would be in tremendous pain, and unless you really knew her or took the time to really talk to her, you would have no idea, because she was the ultimate professional,” Cobb-Hunter said.

Pain is one of the hallmarks of sickle cell disease, an inherited condition that affects an estimated 1 out of every 365 Black babies born in the U.S. It causes red blood cells to take on a curved shape and turn hard and sticky, making it painful for them to move through the body. 

Grant’s courage and perseverance as she dealt with that pain helped raise awareness in the state legislature about sickle cell disease. After her death at the age of 38, lawmakers allocated $1,000,000 to MUSC to develop a comprehensive approach to treating sickle cell disease, raising awareness about the condition, studying ways to cure it and teaching health care providers across the state about the disease and the pain it causes. MUSC will also establish a Rena N. Grant Endowed Chair for Hematology.

Grant’s mother was on hand for the center’s dedication. “It’s so amazing, and it shows how many people loved Rena when she was alive. They’re still showing compassion for her after she’s gone. Now that she’s no longer here, her work is already done. But it will be finished out through the work that MUSC and the elected officials will do for people with sickle cell in the future,” said Laura Grant.

 

MUSC President David Cole, M.D., said the center will help people across the state. “This is a significant step forward toward improving health care access and outcomes for South Carolinians who live with sickle cell disease and sickle cell trait.”

MUSC Health CEO Patrick Cawley, M.D., called the center’s opening a natural and much-needed development. “Each year, we see approximately 300 adults and 500 children with sickle cell disease who come to our clinics for care from all over the state. Our adult patients alone account for approximately 3,000 outpatient visits a year. That's an average of 10 per patient for many reasons, including a lack of access to specialized care and low provider awareness of how best to manage this disease in the emergency room and acute care setting,” he said.

“Hospitalization is very high among sickle cell patients, particularly adults. These funds will support a center of care focused on people with this disease. That'll help us to No. 1: provide more outreach to rural and underserved areas; No. 2: increase service access for people in need of specialized care; and No. 3: address some of the health disparities we see among people with sickle cell disease.”

 

Temeia Martin, M.D., director of the adult sickle cell clinic at MUSC Health, described changes already underway. “To this date, we have already increased our clinical space to allow for co-location of health care services, which improves care coordination and convenience. This central location for clinical services has room for additional infusion beds so that more patients can have access to curative and treatment therapies. And also, it helps to reach our future goals of adding a general therapies staff and more clinic hours.”

She said the center will add a nurse to coordinate chronic and transitional care and aims to hire a program coordinator and educator. “We want to implement this on a statewide basis in raising awareness, improving access to care and providing best practices and care pathway education.”

Other goals: 

• Open the clinic on weekends.
• Offer art therapy, pet therapy, massage therapy and acupuncture.
• Increase mental health services.
• Add to existing palliative care services to improve management of patients’ symptoms.

David Zaas, M.D., CEO of MUSC Health’s Charleston Division, called MUSC’s growing role in advancing treatment and knowledge about sickle cell disease a privilege. “We all believe that in sickle cell care, the science and innovation are really advancing and will improve the care for generations to come.”