No Child Left Behind

Childhood cancer garners sympathy from all, but drug development from few.

BY LAURA BEIL
PUBLISHED: JUNE 12, 2008
Pediatric oncologists have tried to make clinical trials almost a standard part of treatment. Only about 3 percent of adults with cancer are treated through clinical trials, compared with approximately 50 percent of children. And since 2000, the Children’s Oncology Group—a network of hospitals that collaborate on pediatric cancer research—has combined children worldwide to conduct studies with greater statistical power.

“Children will never represent a market force,” says Greg Reaman, MD, chairman of the Children’s Oncology Group. But using drugs without the benefit of formal testing—though it is a practice born of necessity—leaves doctors and families navigating uncertainties. Lacking the prescribing information from clinical trials, physicians are left to calibrate doses and schedules based on the known adult information, the biology of the cancer, and past experience.

“We’ve been successful, but we’ve been lucky,” says Patrick Leavey, MD, clinical director of the Center for Cancer and Blood Disorders at Children’s Medical Center Dallas. Perhaps in a testament to the persistence and teamwork of those who care for children, the Centers for Disease Control and Prevention recently reported that death rates from pediatric cancer fell 1 to 3 percent per year since 1990. Even relying on off-label adult drugs, five-year survival rates for childhood cancers approach 80 percent. Still, that leaves 20 percent of children needing something more.

Despite frustrations, oncologists and patient advocates are heartened by recent signs of a shifting research and legal landscape, driven in part by federal legislation that has tried to make pediatric drug development both attractive and required.

Insurance companies have largely accepted that pediatric oncology might not operate like the adult world, but issues still arise. Four-year-old Aaron Juarez of Avondale, Arizona, developed an allergy to one of the main medications necessary for treating his leukemia. Unfortunately, the new medication his doctors recommended, Erwinia, was only manufactured in Europe. The family’s insurance carrier balked.

“The insurance company doesn’t even know what Erwinia is,” says Aaron’s mother, Tamra. As a result, the hospital is absorbing the cost of the drug, and Aaron’s leukemia appears to be under control.

Despite frustrations, oncologists and patient advocates are heartened by recent signs of a shifting research and legal landscape, driven in part by federal legislation that has tried to make pediatric drug development both attractive and required. For these and other reasons, more pharmaceutical firms appear to be paying attention to children early in the development process.

In one notable case, the leukemia drug Clolar (clofarabine) came on the market in 2004. Clolar, which treats children whose cancers don’t respond to previous drugs, was the first cancer drug in two decades to reach the pediatric market ahead of adults. “This is a major exception,” Dr. Boklan in Phoenix wrote in Molecular Cancer Therapeutics in 2006, “as approval of new cancer drugs for pediatric patients is typically an afterthought to their development and approval for treating adult cancers.”

Talk about this article with other patients, caregivers, and advocates in the Childhood Cancers CURE discussion group.
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