Just weeks before she died of a brain tumor, ten-year-old Gabriella Miller put it best. When asked what message she would give to the nation’s political leaders about the need for children’s cancer research, she responded in a YouTube video that went viral: “Talk is bull___! We need action.”
Cancer kills more children in the U.S. than any other disease — more than AIDS, asthma, diabetes, cystic fibrosis and congenital anomalies combined. Yet government funding for pediatric cancer research through the National Cancer Institute (NCI) has declined by 30 percent over the last decade, with further significant cuts looming. Even without these cuts, only 4% of the National Cancer Institute (NCI) budget goes to pediatric cancer research.
This lack of government support is hurting children already struggling for their lives. Since the number of children and teens in this country diagnosed each year with cancer is a small fraction of the number of adults diagnosed, drug companies see no profit in children’s cancer, and largely ignore it. Thus, while the pharmaceutical industry provides up to 60% of all research and development for adult cancer, it provides virtually none for children’s cancer, making pediatric cancer research almost entirely dependent on government funding through the NCI.
True, there have been tremendous gains in survival rates for children with cancer, from 30 percent some decades ago to about 80 percent today. Such statistics are both hopeful and misleading: “survival rates” for cancer are typically measured after five years. For adult cancers, where the average age of the diagnosis is the late 60s, five years can make all the difference; for children, who on average are diagnosed at age 6, five years means not making it to high school.
What’s more, three out of five children who survive cancer suffer chronic side-effects, and many face life-threatening illnesses such as heart failure and secondary cancers. The reasons are clear: the significant gains in childhood cancer survival rates are the result of giving children “hand-me-down” drugs developed for biologically distinct adult cancers. Children’s bodies can withstand more surgeries, radiation and toxins, but for those who make it through the cancers and the immediate treatments, it is hardly surprising that the long-term side-effects are severe.
Without the profit incentive or sufficient government funding, few if any new drugs are developed for children. Despite revolutionary changes in science and technology, the FDA has approved only two drugs over the last twenty years specifically for pediatric cancer, and one-half of all the chemotherapies used for children’s cancers are over 25 years old.
The response from our political leaders has been talk, but sadly, no action. In reaction to Gabriella’s plea on YouTube, Congress last year did pass the “Gabriella Miller Kids First Research Act,” which would provide about $12 million per year for a variety of pediatric diseases. However, there are reasons to doubt that the act, pushed by now-deposed House Leader Eric Cantor, will ever lead to any actual funding in the present do-nothing Congress. In 2008, both houses unanimously passed the “Conquer Childhood Cancer Act,” which authorized $30 million a year for pediatric cancer research, but they never bothered to allocate more than a miniscule fraction of that sum, and then failed to reauthorize the Act when it expired last year. No wonder ten-year-old Gabriella cursed.
Recent scientific advances have uncovered much of the molecular and genetic makeup of childhood cancers, making it possible to develop therapies – precision medicine – that directly target cancer cells and spare children’s developing bodies. Yet while the NCI will direct tens of millions of dollars in funding this year to take advantage of the latest breakthroughs and technologies for adult cancer, there is no such funding planned for children’s cancer. This is despite the fact that support for pediatric cancer research has provided one of the best returns on investment of government funded medical research.
Children’s cancer advocates are starting to mobilize. Over 250 advocates from 34 states will descend on Capitol Hill this week, representing over 60 childhood cancer organizations. At the same time a coordinated childhood cancer community social media effort will send thousands of advocates virtually to storm Congress under the campaign banner #StepUp: More Funding for Childhood Cancer Research. All advocates are working together to send the message that suffering children must no longer be the collateral damage of partisan budget battles. While it’s too late for Gabriella, we will continue to press on until her call for action is heard.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.