Childhood Cancer Research: We Must Do Better

Every summer about this time I play golf in a pediatric cancer research fundraiser where the parents, family, and friends of Jeffrey Pride raise money for pediatric cancer research. Jeff died of acute lymphoblastic leukemia (ALL) at age seven, and for the last 12 years The Jeffrey Pride Foundation for Pediatric Cancer Research has raised money for the pharmacological research of new chemotherapeutic agents and to subsidize clinical trials so that children will be able to receive new and potentially breakthrough therapies.

Like many charitable organizations that have sprung up after such a tragedy, The Jeffrey Pride Foundation is an all-volunteer, tax-exempt, Internal Revenue Code Sec. 501(c)(3) organization whose sole mission is to raise funds, 100 percent of which go directly to pediatric cancer research. In addition, because the foundation’s board wanted its funds to have the greatest impact, it chose, with the help of Jeff’s doctors, to contribute to the Children’s Oncology Group (COG), the world’s largest pediatric cancer research organization. And as one of the larger donors to COG, the foundation has a designated fund called The Jeffrey Pride Fund for Targeted Therapy Discovery in Childhood Acute Lymphoblastic Leukemia. COG, a National Cancer Institute (NCI) supported clinical trials group, oversees more than 90 percent of all pediatric cancer research done in North America, Australia, New Zealand, Sweden, and the Netherlands, and writes all treatment protocols for children’s chemotherapy regimens. According to the NCI, each year approximately 4,000 children who are diagnosed with cancer enroll in a COG-sponsored clinical trial.

Outlook for Survival

Despite the best efforts of the NCI, COG, private fundraising foundations, and clinical researchers, cancer is still the leading cause of disease-related death among children (ages 1-19) in the United States. In 2014, it is estimated that 15,780 children will be diagnosed with cancer and 1,960 will die of the disease. There is some good news, however. According to the NCI, survival rates have improved for some childhood cancers. For instance, in 1975, just over 50 percent of children diagnosed with cancer survived at least 5 years. However, by 2004-2010, more than 80 percent of children diagnosed with cancer survived at least 5 years.

Pediatric Regimens Needed 

Some evidence suggests that children may have better treatment outcomes if they are treated with pediatric treatment regimens rather than adult treatment regimens. For instance, it is possible that the improvement in the 5-year survival rates for 15- to 19-year-olds with ALL, from approximately 50 percent in the early 1990s to 78 percent in 2003-2007, reflects the greater use of pediatric treatment regimens. This evidence underscores the need for more pediatric cancer clinical trials and the development of pediatric treatment regimens. Unfortunately, this can only happen through greater funding from the government, private donations, and a greater commitment from drug manufacturers. In fiscal year 2012, the NCI’s funding of pediatric cancer research was only 208.1 million, which was approximately 3.5 percent of its $5.87 billion budget.

Long-Term Outlook and Follow-Up Care

While 5-year survivor rates are up for certain childhood cancers, surviving for 5-years is not a lifetime cure. In addition, childhood cancer survivors need follow up care and ongoing medical surveillance because of the risk of complications steming from their treatment. An analysis of childhood cancer survivors treated between 1970 and 1986 has shown that cancer survivors remain at risk for complications and premature death as they age, with more than half experiencing a severe complication or death by the age of 50.

In addition to regular medical follow-up examinations for childhood cancer survivors, the NCI underscores the importance of parents keeping an accurate record of cancer treatments, including: the type and stage of cancer; date of diagnosis and dates of any relapses; types and dates of imaging tests; contact information for the hospitals and doctors who provided treatment; names and total doses of all chemotherapy drugs used in treatment; the parts of the body that were treated with radiation and the total doses of radiation that were given; types and dates of all surgeries; any other cancer treatments received; any serious complications that occurred during treatment and how those complications were treated; and the date that cancer treatment was completed.

The NCI booklet Facing Forward: Life After Cancer Treatment contains a list of organizations that can help parents keep track of this information. The NCI also provides a handbook for parents of children with cancer.