Cancers kill more children than any other disease, and a Hilton Head Island father Thursday will continue his bid to get Congress to pay more attention to — and spend more money on — research and treatment.
"It's a long road ahead," Brandon Arrieta said of his mission.
Arrieta’s son Alex died of leukemia at age 10 in 2016 after chemotherapy extirpated his immune system along with his cancer. This led Arrieta to question why better options were not available for his son and other children like him.
“I just felt curious,” Arrieta said of his mission Thursday. “I wanted to ask the question of why is there no money, why is there no drugs.”
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A Senate appropriations subcommittee will hear testimony Thursday on how the National Cancer Institute, which is part of the federal government's National Institutes of Health, handles its childhood cancer research. Arrieta will be there.
He has been in contact with the office of Sen. Lindsey Graham, R-S.C., a subcommittee member, discussing questions for National Cancer Institute Director Norman Sharpless, who will testify Thursday.
The purpose of the questions is to get a clear picture of how the National Cancer Institute, which is part of the federal government's National Institutes of Health, handles its childhood cancer research.
The institute spent about 4 percent of its budget on childhood cancer research in 2015.
The ultimate goal of Arrieta's pitch is establishing a pediatric-specific branch of the NCI, with it’s own budget, administration and goals, by 2020.
Many of the cancer treatment methods available for children are scaled-down versions of those for adults, which can have long-term debilitating effects on a child’s development.
“I don’t want to make [NCI] the bad guy,” said Chris Farwell, philanthropy manager at the Pediatric Cancer Research Foundation, “but I think they are really of the mindset that what’s developed for adults can be translated to pediatrics.”
Dr. Malcolm Smith, associate director of pediatric oncology at the National Cancer Institute, says the overlap is not quite so simple.
“Focusing on a specific figure misses the larger point that cancer can’t just be put into buckets where this is childhood cancer, this is breast cancer, this is prostate cancer,” Smith said.
The majority of NCI funding goes towards basic laboratory research that is not specific to a particular type of cancer, and that research can help develop treatments for more than one form of the disease, including those only found to children.
The 21st Century Cures Act, signed into law in December, 2016, authorized $1.8 billion for cancer research between 2017 and 2023. Because of that funding, Smith said two new initiatives specific to childhood cancer have started.
Smith said he thinks increased funding for the NCI will be well spent, but was somewhat skeptical of forming a separate entity for childhood cancer.
“There could be advantages to doing that,” he said. “The concern is that the pediatric cancer research benefits from interactions from research with adult cancer,” and that isolating one from the other “may cause inefficiencies and may not lead to the most efficient use of NCI funds.”
Arrieta said the NCI division may start as a small task force in the beginning, “But the key is creating it, to change that mentality” that childhood cancer is a subset disease, he said.