Medical Moment: The fight to fund pediatric cancer research

(WNDU) - The National Cancer Institute (NCI) estimates that in the United States in 2021, there were around 15,590 children and adolescents from the age of 0 to 19 years that were diagnosed with cancer.

Out of these, an estimated 1,780 died of the disease.

Funding sources for childhood cancer are similar to the sources for adult cancers. Funding comes through the government, the pharmaceutical industry, and charity organizations.

The federal government has almost $7,000,000,000 dollars earmarked for cancer research in this year’s budget. That’s the good news, but think about this, every year, only a small portion of that money goes to childhood cancer. One of the main reasons why childhood cancer research is consistently underfunded is that it is considered rare, and many parents and advocates feel that pediatric cancers are not taken as seriously as adult cancers by the medical community. The pharmaceutical industry is reluctant to develop drugs for childhood cancers because the “potential market” is too small, leaving charity organizations as one of the primary sources of funding.

What does that mean for the youngest patients, their families, and the doctors who care for them?

14-year-old Jaynalee Becerril was on her first-ever vacation to Orlando when a nagging sore throat became unbearable.

“That whole week, we were supposed to go to Disney, Universal, a whole bunch of wonderful, wonderful parks, but I never got to go,” Becerril recalled.

Jaynalee was hospitalized. Her bloodwork came back showing very low white blood cell counts.

“She has B cell acute lymphoblastic leukemia,” said Angela Maldonado. “It was very, very overwhelming.”

Jaynalee was transferred to a hospital near her New Jersey home and began immediate cancer treatments. But for pediatric oncologists, the federal dollars to support cutting-edge research aren’t always enough. Only 4% of the cancer research budget goes to kids’ cancer.

“There just really isn’t the funding that we need to conduct the research and find better treatments for our kids,” said Derek Hanson, MD, a pediatric oncologist at Hackensack University Medical Center.

At major U.S. pediatric cancer centers, research is often largely funded by public and private fundraising.

At the Joseph M. Sanzari Pediatric Hospital, where Jaynalee gets treatment, Tackle Kids Cancer is a partnership program with football great Eli Manning. The program helps fund new clinical trials and provides much-needed support to families like Jaynalee’s.

“How I think is that God gave me this sickness knowing I can beat it,” Becerril said.

Clinical trials conducted by the Children’s Oncology Group (COG), an NCI-funded network of researchers and hospitals, have been among the biggest contributors to improvements in the treatment of children with cancer and the continued increase in cure rates for several childhood cancers.

Over the last several years, the focus has been on large-scale sequencing of tumor samples from children with cancer; this included sequencing done as part of the NCI-funded TARGET program and the Gabriella Miller Kids First program.

These programs allowed researchers to analyze thousands of tumors to better understand the underlying genetic changes that cause these cancers, as well as inherited factors that may predispose children to specific types of cancer. They currently use that information to identify new ways to potentially treat different cancers as well as to adjust how to use available treatments to do things like reduce the risk of a child’s cancer coming back.

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