President Trump’s State of the Union proposal to set aside $500 million over the next 10 years to fund pediatric cancer research was cheered by experts in the field even though they said it’s not nearly enough to find cures.
“It should be recognized that this is good and helpful,” Christine Farwell, the philanthropy manager at the Pediatric Cancer Research Foundation, told the Daily Beast. “But it does not exclude the need or the present efforts from the private sector to fund high-quality treatments and cures for the vulnerable pediatric patient.”
According to a report in Politico, House Speaker Nancy Pelosi scoffed at Trump’s plan as stingy during a meeting Wednesday.
“Who gave him that figure? It’s like the cost of his protection of his Mar-a-Lago or something,” she was quoted as saying by a source.
“We’re talking about a moonshot. He’s talking about a trolley ride.”
Pediatric cancer specialists, though, said they welcome any extra money and noted that research is chronically underfunded, even though breakthroughs are more promising than ever.
“New developments in drug discovery suggest we may have new ways to develop drugs that target pediatric cancers,” said Scott Armstrong, chair of pediatric oncology at the Dana-Farber Institute and Boston Children’s Cancer and Blood Disorders Center.
“We should we pushing harder than ever to leverage this information to develop new treatments.”
Farwell said some of the newest areas of research are also the most expensive.
“With the introduction of immunotherapies and targeted therapies, it has become an entirely new landscape for cancer research,” she said, noting that her foundation had only $2 million last year to fund research and received $68 million in requests.
Pediatric cancer researchers have to scramble for funds in part because the number of patients their work would help is a fraction of cancer cases overall.
“Pediatric cancer is considered rare and it is not profitable,” Farwell said. “DIPG [diffuse intrinsic pontine glioma], for instance, sees 300 to 350 new cases a year. A pediatrician could go their whole career without a patient having DIPG. Only 300-350 children a year would benefit from a treatment or cure.”
Pharmaceutical companies are less likely to try to develop drugs that are beneficial for a tiny subset of the population. And the limited amount of data available is another hurdle for researchers.
But childhood cancer is becoming more common.
According to the American Cancer Society’s latest statistics, there are 12 major types of pediatric cancers, encompassing 100 subtypes. Rates have been increasing 0.6 percent per year since the mid-1970s, leading to a 24 percent increase over the past 40 years in pediatric cancer rates. One in 285 children was diagnosed in 2014.
Armstrong said that $500 million over the course of the next 10 years would be a “welcome addition to the support that is currently available” and “would certainly galvanize the field.”
The National Cancer Institute received $5.7 billion in federal funds for the current fiscal year and another $400 million from the Beau Biden Cancer Moonshot program established during the Obama administration. Childhood cancer gets about 4 percent of that money or about $259 million—so an extra $50 million a year would represent about a 20 percent increase.
Armstrong said if the money is approved, it will likely be disbursed through National Institutes of Health grants. And Farwell said that could mean it doesn’t go to more experimental studies.
“The NIH funds that are public research dollars most often support research that is well-developed and far down the path,” she said.
As a result, private organizations like her foundation have taken the lead on funding “emerging research” that might not have the full support of academic institutions and hospitals.
“PCRF is effectively funding at the beginning stages,” she said.
Armstrong said that pediatric brain tumors and leukemias are the most common child cancers and the most deadly, which makes them the priority for extra funding.
“However, few new therapies have been developed for pediatric sarcomas, the third major type of childhood cancer,” he added. “So work is needed across the spectrum.”
Farwell noted that research has already yielded tremendous results for kids with cancer.
“Research is the key,” she said. “In 1982, if five children were diagnosed with leukemia, only one would survive. Today, thanks to research, if five children are diagnosed, four can expect to survive.”
— with additional reporting by Victoria Albert