The new year will be different, but still very challenging for Carolina families with children battling cancer, according to Children’s Cancer Partners of the Carolinas (CCP), the two-states-wide safety net organization that gets children to treatment. Based on National Cancer Institute data, CCP projects an additional 600 or more North and South Carolina children will be diagnosed, and the organization’s own caseload of families needing help with treatment access and aftercare will swell to 2,000 or more.
There are only ten childhood cancer treatment centers across the Carolinas. Travel costs will be a continuing burden, especially since so many Carolina children are referred for specialized care in New York, Houston or beyond. CCP provides those families with lifesaving assistance in the form of travel, lodging, meals away from home, and emergency help.
Cancer remains the leading disease killer of children in America. Overall incidence rates for childhood cancers have risen 24% over the past 40 years, according to National Cancer Institute data. Conversely, cure rates have improved, but with only 4% of all cancer research dollars devoted to pediatric cancers, rapid advances are unlikely. The Southeast states are especially challenged, according to studies performed by Dr. Kathleen Brady for the USC Upstate Metropolitan Studies Institute, due to a deadly trifecta at work:
- Cancer rates are well above the national average for all cancer types and ages
- Access to public health services in the region is below average
- The prevalence of rural poverty is above the national average
Together these factors put children of rural and poor families at greater risk for missed or late diagnoses, under-treatment, relapse or death. CCP makes a difference by helping to improve Carolina survival rates well beyond the 4-in-5 national experience. Through its direct family support, CCP assists in ensuring access to specialized care for children, regardless how far, how often, or for how long a child must travel.
“People often think that with adult cancer services so abundant, children must be even better served – but the absolute reverse is true,” said CCP Executive Director Laura Allen. “CCP has made its goal to combat that lack of support for the families of children whose lives depend on timely cancer care.”
CCP notes five simple facts that tell a hard story:
- Cancer remains the leading disease killer of children in America
- Only 200 facilities nationwide provide pediatric oncology care, compared with thousands serving adults
- Children of rural and poor families face three times greater risk of incomplete care or death
- Only 4% of research dollars are focused on pediatric cancers
- One in 5 children will not survive five years from diagnosis; one in three when a more realistic survival period of 15 years is applied
There are added factors that make it so difficult for these families:
- As a result of their childhood cancer experience, most survivors have a diagnosable mental health or other long term health issue
- 75% of families experience the loss of half or more household income due to caregiving and treatment travel requirements
- More research dollars are spent on (male) prostate cancer alone than all pediatric cancers
- Cancer treatment costs are five times greater than for any other pediatric condition
- The average single hospitalization for childhood cancer costs over $40,000
“We also help families whose brave children lose their battle by providing funeral assistance, and this past year launched CAMP RACHEL for bereaved families. It was a great success, and has helped families from spiraling into despair,” said Allen. “The siblings are often overlooked and need help finding the strength to remember a brother or sister lost.”
CCP relies entirely on contributions and grants, receiving no government funding. Its shining star for future sustainability is a school event called “Kidz in Lids,” invented by a 10-year old. Schools pick a day when students can bring in one dollar as a donation and then wear their favorite hat in school all day and adults chip in $5 to wear blue jeans in school.
“‘Kidz in Lids’ is spreading from school to school, with schools competing on a per capita basis so big schools and small ones can square off evenly,” explained Allen. “It is a civics lesson in a day – healthy students appreciating their good fortune while helping others.”
CCP does not conduct research or provide treatments – they simply make sure kids get there, regardless of how far. All funds raised stay local and are assigned 100% to the community or county where they are contributed to help local families. CCP and its Family Advocates have offices in Spartanburg, S.C. and Durham, N.C.
For more information, visit CCP’s website at www.childrenscancerpartners.org or contact them at 864-582-0673 or by mail to 900 South Pine Street, Spartanburg, SC 29302