DHEC to launch voluntary sickle cell disease registry

Sickle cell disease is the most common inherited blood disorder in the U.S., but what we know about its impact on South Carolinians is limited.
Published: May. 30, 2023 at 4:57 PM EDT|Updated: May. 30, 2023 at 5:35 PM EDT
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COLUMBIA, S.C. (WCSC) - Sickle cell disease is the most common inherited blood disorder in the U.S., but what we know about its impact on South Carolinians is limited.

In 2016, a legislative study committee on sickle cell disease reported there needed to be greater public awareness about the disease in South Carolina.

It also found better education, including best medical practices, and more funding to improve access to healthcare programs were required, too.

That sparked the 2019 South Carolina Sickle Cell Disease State Plan, and last year, Gov. Henry McMaster signed legislation — sponsored by a bipartisan group led by Rep. John King, D-York — to establish a voluntary sickle cell registry in South Carolina.

The South Carolina Department of Health and Environmental Control is aiming to have it up and running later this year.

“We’re still in the development phase, but everything is moving quite rapidly, so my hope is sooner,” Anna Bleasdale, the director of DHEC’s Children and Youth with Special Health Care Needs Division, said.

Sickle cell disease is a blood disorder that causes red blood cells to become misshapen and break down.

This often results in excruciating pain and fatigue anywhere that blood flows in the body, and blocked blood flows can lead to strokes and infections.

One in 400 Black Americans and one in 19,000 Latino Americans has sickle cell disease, while one in 12 Black Americans and one in 100 Latino American are carriers.

“We know that the national data is there, but that state-specific data is just very limited,” Bleasdale said.

DHEC is encouraging South Carolinians with sickle cell disease to register once it is operational, likely through their providers.

“This will really give us the opportunity to look at health outcomes, health opportunities, access to care, and ensure individuals living with sickle cell have the services and resources they need to live healthy lives,” Bleasdale said.

In addition to being voluntary, DHEC says the online registry will be secure.

South Carolinians with sickle cell disease will be able to submit information, including their diagnosis, medications, and current treatment plan, and both they and their doctor will be able to access it.

“And then the individual, should they need to seek care from a provider outside of their routine hematologist, they can actually share that information with that provider as well who can validate it and hopefully treat them more timely and appropriately for sickle cell disease,” Bleasdale said.

The Sickle Cell Disease Association of America oversees a similar voluntary registry at the national level.