According to Children’s Cancer Partners of the Carolinas (CCP), the patient and family support organization that serves all of North and South Carolina, cancer will remain the No. 1 disease killer of Carolina children in the year ahead.

Once again, in 2024, more than 700 Carolina children and youth ages birth to 18 will be diagnosed, joining an estimated 10,000 children and youths in the two states already in treatment, remission, or survivorship.

Nationwide, 2024 diagnosis estimates range from 15,850 by the CDC, to nearly 17,000, according to Children’s Oncology Group. The most common types in children ages 0 – 14 are leukemia, brain and central nervous system tumors, Neuroblastoma, and non-Hodgkin lymphoma. In ages 15-19, the most common are thyroid, Hodgkin lymphoma, brain and central nervous system, and non-Hodgkin lymphoma. In both age groups, boys are 35 percent more often diagnosed, with similarly higher death rates.

Drawing on data from the National Cancer Institute, the Centers for Disease Control, and the Children’s Oncology Group, CCP has released its annual Childhood Cancer Outlook for the Carolinas, a report summarizing the impact of childhood cancer across the two states.

The big five childhood cancer facts

1. Cancer remains the No. 1 disease killer of children, accounting for 44 percent compared with 21 percent for heart disease and just 10 percent for flu and pneumonia.
2. Too few places treat children — only three in South Carolina and seven in North Carolina, compared with hundreds of treatment facilities for adults.
3. Children of rural or poor families face a three times greater risk for late or missed diagnoses, under treatment, relapse or death.
4. Barely 4 percent of all cancer research dollars are devoted to pediatric cancers.
5. One in 5 children will not survive five years after their diagnosis; nearly one in three will not survive 20 years.

Expanding on these points, the CCP report underscores the extraordinary hardships of childhood cancer, noting that there are no effective preventive measures or detection screenings. As a result, childhood cancer diagnoses are disproportionately more late-stage than for adults. The loss of life is dramatically greater — with the average childhood cancer victim losing 71 years of life expectancy compared with 15 years for the average adult.

Due to the results of some treatments on their young bodies, two out of three childhood cancer survivors will develop at least one chronic health condition, including musculoskeletal problems and secondary cancers. Nearly 60 percent of childhood cancer survivors experience severe or life-threatening complications in adulthood.

Nationwide, only 201 hospitals treat childhood cancers. In the Carolinas, just 10: PRISMA Health (Greenville and Columbia, S.C.), Medical University of South Carolina (Charleston, S.C.), HCA Mission Health (Asheville), Brenner Children’s Hospital (Winston-Salem), Atrium/Levine Children’s Hospital and Novant Health (Charlotte), Duke Children’s Hospital (Durham), UNC Children’s Hospital (Chapel Hill) and ECU Maynard Children’s Hospital (Greenville). Since none of these facilities have all the latest treatments and technologies, as many as 1 in 5 children must be referred to national research centers in Houston, New York, Philadelphia or beyond.

Distance to treatment and family resources are powerful social determinants of survival. Studies have shown that children of rural or poor families face three times greater risks for late or missed diagnosis, insufficient treatment, relapses, or death.

“It is not a lack of love,” CCP Executive Director Laura Allen said. “It is the sheer challenge of distance and the means to get there. In two-income households, one parent leaves work for caregiving, while one-income and single-parent households are all too quickly in a financial crisis.”

Data shows that 75 percent of childhood cancer families suffer the loss of half or more of their income.

While immuno- and proton-therapies are showing great promise for pediatric cancer patients, any new research breakthroughs are unlikely in the year ahead since barely 4 percent of cancer research is targeted at pediatric cancers. Most of the current standard treatments for pediatric cancer were approved before 1990 and half before the mid-1980s.

The Children’s Oncology Group, the nationwide network of all pediatric cancer centers and oncologists, operates an aggressive program of clinical trials, most frequently examining new adult cancer treatments for their efficacy in children under different delivery, dosing or duration regimens.

“When one of our CCP children is referred to a clinical trial, we move swiftly to ensure access and travel support because it means our Carolina doctors have and this is that child’s best, and all too often, last chance for survival,“ Allen said.

Depending on tumor type, survival rates range from less than 1 percent to more than 90 percent. Childhood leukemia is a shining example of progress, where survival rates have risen steadily from 10 percent 40 years ago to 90 percent today.

“Whereas cancer survival is officially measured as five years beyond treatment,” noted Allen, “that is not especially meaningful for children whose average age at diagnosis is 6.”

Data shows that as many as 1 in 3 children do not survive more than 20 years beyond their treatment.

While pediatric cancer centers refer children to CCP as a “best practice,” there can be oversights or exceptions, according to Allen, so CCP urges anyone who knows of a child battling cancer to urge them to contact CCP at 864-582-0673 or info@childrenscancerpartners.org.