When doctors told my wife and I that our soccer-playing, Harry Potter-reading 7-year-old daughter Olivia had cancer, we were struck with panic, dread and challenges we never could have imagined. And once we overcame the shock, we were stunned to learn that children’s cancer is a disease that’s largely ignored.
We quickly discovered that, despite all the scientific advances in recent decades, the standard of care for our daughter’s disease was essentially unchanged since the 1970s. As with virtually all children’s cancer patients, the drugs Olivia received were “hand me down” drugs: first developed for adult cancers and then tried on children. As we traveled to three major cancer centers in a desperate attempt to save our daughter’s life, her doctors — the world’s leading pediatric oncologists among them — told us that because of a lack of funding, they were in effect fighting children’s cancer with one hand tied behind their backs.
Although cancer still kills more children in the United States than any other disease, there have been tremendous gains in survival rates in the past decades. But these gains have come at a considerable cost: Three out of five who survive children’s cancer suffer chronic side effects, and 40 percent face life-threatening illnesses such as heart failure and secondary cancers. The reasons are clear: The hand-me-down drugs are developed for biologically distinct adult cancers. Children’s bodies can absorb more toxins, and if they survive the cancers and the immediate treatments, the long-term side effects are severe.
Recent scientific advances have uncovered much of the molecular and genetic makeup of childhood cancers, making it possible to develop therapies directly targeted at cancer cells and therefore less toxic to children’s developing bodies. Yet progress in pediatric cancer treatment has stagnated because, as a report from the National Academy of Sciences argued, there is a “near absence” of research into pediatric cancer drugs. The Food and Drug Administration has approved only two drugs specifically for pediatric cancer over the past 20 years.
Why the neglect? Simply put, there is no profit in children’s cancer. While about 13,500 children and teens are diagnosed each year with cancer in this country, this is a small fraction of the number of adults diagnosed with cancer. Drug companies search for a cure for prostate cancer (where the average age of diagnosis is 70 but the number of people affected is considerably greater) and largely ignore children’s cancer. While the pharmaceutical industry provides up to 60 percent of all research and development to fight adult cancer, it provides virtually none for children’s cancer. In our daughter’s case, a drug company halted the production of a promising drug for treating her cancer simply because the drug had proved ineffective in treating the intended target, colon cancer. We learned this was no isolated example.
When markets fail to produce desired outcomes, government needs to step in. Yet overall government spending on cancer research through the National Cancer Institute is slated to be cut by more than 5 percent this fiscal year because of the sequester. Worse still, even without those cuts, the National Cancer Institute spends only 4 percent of its budget on pediatric cancer, despite the disparities in private sector funding between adult and children’s cancer.
True, far fewer children than adults die from cancer. Yet the average age for the diagnosis of adult cancer is the late 60s; for children it is age 6. In terms of the potential years of life saved, a cure for childhood cancer would provide roughly the same benefit as a cure for breast cancer. While a cure for breast cancer is justifiably a cause célèbre, a cure for children’s cancer is not.
What can be done? In 2008, the Conquer Childhood Cancer Act, which authorized $30 million a year for pediatric cancer research, passed both houses of Congress unanimously, but with a cruel twist: Congress allocated only a minuscule fraction of that sum, amounting to 0.00003 percent of last year’s federal budget, and even that is under threat unless Congress votes to reauthorize the act this year. Last year Congress passed the Creating Hope Act, which provides some incentive for drug companies to develop treatments for rare pediatric disease. It’s a first step, but this is a limited demonstration project, and much more is needed. More will not happen until pressure is placed on Congress, the pharmaceutical industry and other major players. That is why my family, together with families from 31 states, mobilized on Capitol Hill this week for Childhood Cancer Action Day, to push members of Congress to act on the lifeboat principle: Children should come first, not last.
Without this understanding, more children, like our daughter Olivia, will die from cancer or, should they survive, face serious long-term side effects. Doctors told us they couldn’t do anything to save Olivia’s life. My family and I, together with all the other families who came to the Hill, refuse to accept that prognosis for other children, knowing that with the right investment in research, effective treatment for pediatric cancer is within reach.
Stephen Crowley is a professor of politics at Oberlin College.
Terri Henderson, 6, center, whose mother is El Salvador, attends a rally with members of Congress at Union Station's Columbus Circle to announce the Restore Opportunity, Strengthen, and Improve the Economy (ROSIE) Act on July 29, 2014. The legislation provides incentives for government contractors to pay a living wage and other benefits that would help low-income workers.