New SC sickle cell disease registry aims to fill gaps, speed up treatment
COLUMBIA — South Carolinians with sickle cell disease can voluntarily add their names to an online registry that’s meant to eventually increase access to care and speed up treatment.
The state’s public health agency announced the launch Friday of the secure, private registry accessible by patients, their caregivers and doctors.
More than 100,000 people in the country have the genetic disease that affects red blood cells. But the total number, including how many people have it in South Carolina, is unknown. The disease is more common in Black people. The Centers for Disease Control and Prevention estimates one in every 13 Black babies is born with the gene for sickle cell and one in every 365 Black people have the disease.
Sickle cell disease causes red blood cells, usually round, to make a C-like shape similar to the curved blades on the farming tools for which the disease gets its name. Instead of flowing through the veins, the curved cells are stiff and sticky, causing them to get stuck in blood vessels. This can cut off the flow of blood and oxygen to a person’s limbs, causing them pain.
Systems like South Carolina’s new registry can help give researchers and medical professionals a better idea of how many people have it and where they live. That can in turn tell the state’s health agency how it can help and where to send aid, said Malerie Hartsell, manager for the state agency’s Bleeding Disorders Program.
Without the data, it’s difficult to say where people need the most help, she added.
The data “helps us to understand where those gaps are,” Hartsell said.
The registry can also serve as proof for patients entering an emergency room or urgent care center, where they’re not being seen by their typical doctor. The hope is that this will help people get pain relief more quickly, said Rep. John Kin. The Rock Hill Democrat sponsored the legislation to create the registry, which passed both chambers unanimously last year.
When his nieces with sickle cell disease visit the hospital for pain medication, doctors and nurses often brush them off as just looking to get drugs, he said.
Sen. Mia McLeod, who was diagnosed with sickle cell disease her freshman year of college, said she’s used to her pain being dismissed when she visits the hospital in the midst of a flare-up.
“I’ve gotten the side eye many times from health care practitioners, doctors, nurses, emergency room personnel who thought I was faking or just embellishing the pain,” said the Columbia Independent.
Because of those sorts of doubts, people with sickle cell disease are often left to sit in waiting rooms for hours, Hartsell said. The registry will hopefully get them seen faster.
Once a person puts their name on the registry, their primary physician will get an alert and must confirm the person’s sickle cell diagnosis.
“These people are in extreme pain,” King said. “I hope it will lessen the amount of time they’re spending in medical facilities and the ER.”
The registry is just a first step. Along with using the data to decide how and where to spend money, another big piece will be educating people, particularly medical professionals, on how to treat people with sickle cell disease, King and Hartsell said.
King said he hopes the Medical University of South Carolina can help lead that effort through its newly expanded Rena N. Grant Sickle Cell Center, named for the legislative analyst who had sickle cell disease and died in 2020.
“As we continue to find ways to improve sickle cell care, the South Carolina Sickle Cell Disease Registry will be a step forward to improving health care access and outcomes for South Carolinians,” MUSC President David Cole said in a news release.