COLUMBIA, S.C. — The South Carolina Department of Health and Environment Control (DHEC) recently launched a new sickle cell patient portal to improve the quality of life for people with a range of related disorders in South Carolina.
This comes more than a year after the governor signed a bill into law to open a state portal. According to the Centers for Disease Control and Prevention (CDC), about 100,000 Americans live with sickle cell anemia. DHEC said this data isn’t as accessible in South Carolina.
“One of the things to look at was the prevalence of sickle cell disease here in the state there’s not as much adequate data with regards to the total number of individuals or even incidents when it comes to the number of individuals living with sickle cell disease in the state,” Malerie Hartsell with DHEC said.
Hartsell said it’s a criteria the state legislature explored during the 2021-2022 session with the Rena Grant Sickle Cell Disease Voluntary Patient Registry Act.
“The registry is a patient-powered registry it allows individuals to go in and register if they have been diagnosed with sickle cell disease. So it’s an opportunity for us to be able to collect data and data surveillance and data collection to determine the prevalence of sickle cell disease here in the state,” she said.
The impact of a registry like this one will help the state learn where there’s a greater need for resources.
“It allows us to address, well better address the barriers we have in the state such as access to care, transportation, time it takes for someone living in a rural area of the state to get their provider,” Hartsell said.
People living with sickle cell disease or care for someone with the disease can register now.