It all began a month before Maria’s first birthday. She started experiencing seizures and weakness on the left side of her body. Maria could no longer move around. All her smiles, laughs, and babbles had turned into a cold stare. She had increasingly become irritable over the last two months, but her parents thought it was one of the changes associated with child development.
After some tests, Maria was diagnosed with a malignant brain tumor and was referred to a hospital for specialist care. Doctors did emergency surgery to help relieve the pressure on her brain, hoping to improve her chances of survival. The months that followed were extremely tough for little Maria and her parents, with frequent hospital visits and admissions for cancer therapy and managing complications. Her parents struggled to understand medical information and keep up with both Maria’s health needs and their own emotional needs. After a nine-month journey with brain cancer, Maria passed away.
A leading cause of childhood death
Cancer is the leading cause of non-injury-related mortalities among children 0-19 years in the United States. Each year about 15,590 new cases of childhood cancer are diagnosed, with an expected 1,780 mortalities. Childhood cancers often differ from adult cancer and are not strongly linked to lifestyle, but they have been linked to some biological and environmental factors that may have existed during either the prenatal or postnatal period.
Childhood cancer survival has greatly improved over the last four decades as a result of scientific advancements in detection and treatment, with 84% of children now having a five-year survival rate. Despite the significant improvement in the overall survival rate of childhood cancers, thousands of young lives are still lost annually from cancer. Minority children are disproportionately affected, having more than 38% increased risk of death compared to whites.
Several factors influence the lower survival rates in the minority populations, including social stratification mediated through systemic racism. A higher percentage of uninsured or underinsured children are from minority racial groups and they live in poorer neighborhoods with limited access to quality health care. Cancer patients on Medicaid are known to receive lower quality care than those with other forms of insurance. Under these circumstances, some pediatric cancer patients are denied the benefits of timely access to care, early diagnosis, and treatment to achieve better treatment outcomes. A higher proportion of minority children are diagnosed with advanced stages of cancer, which is known to be associated with poor survival.
The estimated direct cost of cancer care for each hospital stay for a child with cancer is $40,400, and as much as $123 million is spent on childhood cancer care annually. Aside from hospital stays related to the main cancer therapy, other factors such as infections, surgical complications, pain and nutritional deficiencies drive the frequency of hospital stays. There are also outpatient visits that disrupt parents’ or caregivers’ work schedules. Indirect costs of cancer care are incurred from providing the non-medical needs of the sick child, transportation to health facilities, and temporary accommodations during treatment. Direct and indirect costs, together with parental employment challenges are financially crippling for families impacted and worse so for the minority populations.
What can be done
Although progress has been made in cancer research and treatment, according to American Childhood Cancer Organization (ACCO), there is a longstanding existing gap in funding allocation for childhood and adult cancer research and treatment with more funds dedicated to adult cancers. Currently only 4% of funds allocated to cancer research and treatment are dedicated to childhood cancer. This is woefully inadequate considering the impact of childhood cancer on our future generation. Previous efforts have led to improved treatment for childhood leukemia, which was previously the leading cause of childhood cancer deaths.
There is an urgent need for the state and the entire country to be committed to investing in childhood cancer research and treatment to reduce the mortality associated with other cancer types — including brain and central nervous system tumors, which are currently the leading cause of childhood cancer deaths. To help eliminate the existing survival disparities, the Children’s Health Insurance Program (CHIP) should be expanded to children from all racial and economic groups diagnosed with cancer and they should be granted equal access to care in specialized cancer centers where they can receive quality care from multidisciplinary teams.
Joseline Haizel-Cobbina, M.D., is a graduating MPH student at the University of Minnesota’s School of Public Health.
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