Two days. That’s how long Carlton Beasley, a Fayetteville-based music producer and cinematographer, said he has lived pain-free in his 43 years of life.
Beasley was diagnosed with sickle cell disease at six months old. The disease is a genetic blood disorder that impacts blood cells’ oxygen-carrying proteins, making them hard and sickle-shaped. The shape often clogs blood flow, causing debilitating pain known as a sickle crisis.
Some days, Beasley said he’s doubled over or curled up on the floor in pain. He said sometimes a hot shower helps. Other times the pain is so bad he has to go to the emergency room.
“You learn to mask the pain,” Beasley said. “You learn to just not care about the pain anymore. Just tuck it away until you’re by yourself, and then you can let it all out.”
In North Carolina, 435 babies were born with sickle cell between 2016 and 2020, according to a study from the Centers for Disease Control’s Sickle Cell Data Collection Program. It’s the second-highest total out of the 11 states that participated in the study. Sixteen states have programs collecting such data.
Locally, 28 babies with sickle cell disease were born in Cumberland County between 2016 and 2020. That’s the fourth-highest county total in North Carolina, with Cumberland representing over 6% of the state’s total number of babies born with sickle cell disease.
And despite the county’s high rates, there are no sickle cell specialists in the region.
“I dubbed this region as a sickle cell desert, in the sense that there is no specialty care,” said Ellazoa McArthur, the Fayetteville regional program director of Piedmont Health Services and Sickle Cell Agency, a federal, state and community-funded case management agency for those living with sickle cell disease.
Across the river and through the woods to get treatment
North Carolina has five comprehensive sickle cell medical centers. Only two — Duke’s Comprehensive Sickle Cell Center and UNC-Chapel Hill’s Comprehensive Sickle Cell Program — are within 90 minutes of Fayetteville.
Beasley drives 75 minutes from his home in Spring Lake to the Duke clinic in Durham. He does this two to five times a month, sometimes going up multiple times in a single week between his doctor’s visits and those for Leilani, his daughter who also has sickle cell disease.
“It’s a lot of driving,” Beasley said. “A lot of gas.”
Toni Stewart, the current vice chairperson for the Cumberland County Board of Commissioners, takes her five-year-old granddaughter about 90 minutes away to UNC Hospitals Pediatric Hematology Oncology Clinic in Chapel Hill. Her granddaughter was diagnosed with sickle cell disease at birth as part of the state’s newborn screenings.
However, Stewart said that when her granddaughter is in a sickle crisis, she first goes to Cape Fear Valley Health Medical Center’s Pediatric Emergency Department before being transported to UNC for specialty care.
“We should be able to get treated right here,” Stewart said. “My baby should not have to go all the way to UNC to be treated.”
McArthur said that transportation is the number one barrier to care for county residents living with sickle cell disease. Six and a half percent of the county doesn’t have access to a car, according to data compiled by the North Carolina Institute of Medicine.
Cumberland County residents with sickle cell struggled with transportation more than others in the state, according to a CDC study headed by Mariam Kayle, co-lead of the North Carolina Sickle Cell Data Collection Program. Kayle said her team mapped out North Carolina’s comprehensive sickle cell medical centers and found no care centers near Fayetteville or Cumberland County.
“But there is a substantial amount of people who live there and a substantial amount of babies born in this area [with sickle cell disease],” Kayle said. “So that means they either are not getting the care they need, or they’re having to drive long distances for it.”
Piedmont Health Services and Sickle Cell Agency provides gas cards for clients traveling for treatment. However, it can be a drop in the bucket, said McArthur. He has clients who may lose a day’s wages to take off work for the time needed to get to an appointment and back.
“Can you imagine being in pain, having to make that drive?” McArthur said. “Can you imagine having to get up early in the morning for an 8:30 appointment at Chapel Hill or Duke, and then have to be there until after lunch and then drive home in rush hour traffic? It’s taxing, and still, our very resilient sickle cell warriors do that in order to maintain their health care.”
Children who need care but cannot access it locally may miss as much as a full day of school driving to the Triangle for appointments, McArthur said. Stewart’s granddaughter has already missed some school because of sickle cell disease. She started kindergarten this year.
Inexperienced local care
The county does have some local treatment options that provide varying levels of care.
The Duke Hematology of Fayetteville is a sickle cell travel clinic that happens the second Wednesday of every other month out of the Duke Children’s Specialty Services of Fayetteville.
The Fayetteville office of Piedmont Health Services and Sickle Cell Agency provides care coordination for residents of Cumberland, Hoke, Harnett and Robeson counties. McArthur and his team of case managers help clients access anything from sickle cell screenings to specialty physicians to child care.
However, many of Piedmont’s resources are crowdsourced through community partners, so McArthur said there’s a limit to how much the agency can help.
“With two of the best hospitals in the state of North Carolina within our region, such as Cape Fear Valley and First Health, there’s no reason why we should not have a hematologist in this region that will see our sickle cell clients,” McArthur said.
While Cape Fear Valley Health has hematologist-oncologists on staff, the system doesn’t have any specialized in sickle cell disease.
“While we recognize the need for this specialized expertise, the relatively smaller affected population in our community has made recruiting an SCD [sickle cell disease] specialist challenging,” said Chaka Jordan, Cape Fear Valley Health’s vice president of marketing and communications. “However, the establishment of the Methodist University Cape Fear Valley Health Medical School marks a significant step forward in attracting more specialists to our area, including those in specialized fields such as sickle cell care.”
Jordan said the health system recognizes the importance of its emergency departments in treating the intense pain from sickle crises. She said Cape Fear Valley Health’s EDs are ready to “respond to the unique needs” of sickle cell patients. Those unique needs include opioid dosing based on their individualized care plan, according to the American Society of Hematology’s recommendations for sickle cell acute pain management.
However, Beasley said he’s avoided the Cape Fear Valley Health Medical Center’s ED for his sickle crises for the past five years because of poor treatment. He recalled long wait times and nurses digging into him trying to find a vein for his IV when he did go, causing him more pain. Beasley also described being treated like a drug seeker when asking for pain medication.
“The assumptions are, ‘Oh, he’s just here to get medicine. They just like to get high,’” Beasley said.
Broadly, McArthur and Kayle attribute health care providers’ poor treatment and approach to the disease to several factors including discrimination and lack of experience with sickle cell disease. Kayle also pointed to crowded emergency room departments as another influence.
Sickle cell disease is primarily assumed to be a disease solely impacting Black people. Though the disease disproportionately affects Black people, with 95% of babies born in North Carolina with sickle cell between 2016 and 2020 being Black, the North Carolina Sickle Cell Syndrome Program website says an increasing number of white North Carolinians are presenting with sickle cell trait.
“I’ve had clients that literally would make themselves up, make sure that they look the best that they can because they feel like, if they look the best that they can, then they’ll be treated like they look,” McArthur said, referring to the racial discrimination he believes clients face when seeking care for sickle cell disease. “They’ll be seen faster and they’ll be treated differently when they go to the ER.”
The rarity of sickle cell disease also makes it hard to educate physicians about it nationally, not just within Cape Fear Valley Health, said Jordan. Earlier this year, the health system renewed its commitment to educating physicians about the disease as part of an internal task force on health equity, said Jordan.
A lifetime financial burden
Sickle cell patients with insurance pay, on average, over $34,000 a year in total health care and out-of-pocket costs related to their disease, according to a study published by the American Society of Hematology. The annual cost represents 55% of Cumberland County’s median annual household income and doesn’t account for things like traveling to appointments.
“Even with insurance, it’s a financial hardship,” Stewart said. “It impacts the whole family.”
More than half of all Americans with sickle cell disease are covered by programs for those with low incomes like Medicaid or the Children’s Health Insurance Program. In North Carolina, 84.5% of children born with sickle cell disease were at some point covered by Medicaid between birth and age three, according to a 2024 peer-reviewed study in the Journal of the American Medical Association.
Recently approved genetic treatments for sickle cell disease — gene therapies Lyfgenia and Casgevy — only balloon the cost of the disease. Each costs millions per patient. Leilani, Beasley’s daughter, was part of the Lyfgenia trial. As part of the trial, Beasley avoided the treatment’s $3.5 million price tag and his daughter became equivalent to a carrier for sickle cell disease thanks to the treatment.
Beasley said Leilani’s treatment means no more birthdays and holidays spent in the hospital. It means she won’t have any sickle crises. He hopes it means she gets to have the childhood he was deprived of.
“It means a lot,” Beasley said.
U.S. Centers for Medicare and Medicaid Services have developed a model to make genetic treatments more affordable, allowing participating state Medicaid agencies and manufacturers to negotiate treatment prices. NC Medicaid applied to join the model and expects to see cost cuts for NC Medicaid and its recipients eligible for the gene therapies by January 2025.
Editor’s note: An earlier version of this article incorrectly stated Miriam Kayle was the lead of the North Carolina Sickle Cell Data Collection Program. She is the co-lead of the program. This article has been updated with the correct information. CityView apologizes for this error. This article has also been updated to clarify that only 11 of the 16 states that collect sickle cell data participated in the CDC study and to clarify the additional factors contributing to poor treatment of sickle cell disease patients in health care settings.
CityView Reporter Morgan Casey is a corps member with Report for America, a national service program that places journalists into local newsrooms. Morgan’s reporting focuses on health care issues in and around Cumberland County and can be supported through the CityView News Fund.