Fluorescence microscopy image of human neuroblastoma cells.Credit: Vshivkova/ Shutterstock
When 16-year-old Jacob Peters was diagnosed with non-Hodgkin’s lymphoma in 2011, he wanted to be known for more than being “that kid with cancer.” Following Jacob’s death 290 days later, his parents and younger brothers searched for a way to honour him that matched his outsized personality.
“His motto was always ‘go big or go home’, so it took us a couple of years to find a cause that felt big enough,” says Gary Peters, Jacob’s father. That cause was joining the effort to secure much-needed funding for paediatric cancer research in Nebraska.
This effort, through the engagement of clinicians and other parents, notched its first win in 2014, when the Nebraska Legislature approved US$1.8 million in seed money — one dollar for each Nebraskan resident — to fund paediatric cancer research infrastructure at the University of Nebraska Medical Center (UNMC).
The Pediatric Cancer Research Group (PCRG) was established. It later became an 'area of emphasis' within the Child Health Research Institute (CHRI), the research branch of UNMC, as part of CHRI's initiative to boost child cancer research. Today, the PCRG represents a collaborative effort between the university and Children's Nebraska paediatric hospital, encompassing 80 researchers.
Don Coulter, director of the PCRG and paediatric oncologist at the University of Nebraska Medical Center and Children's Nebraska, was there from the start. At the first round of funding, he was one of just three researchers. In 2015, a new bill was approved to continue appropriations of US$1.8 million annually. That amount was increased to US$4.5 million starting in 2023.
Overall, the National Cancer Institute awards only about 4% of their budget to paediatric cancer research, says Coulter. “Although philanthropic groups support this work, researchers often have inadequate funding to ask and answer critical research questions that will lead to new treatments for our young patients.”
One of these questions relates to Nebraska’s high paediatric cancer incidence rates.
What is driving paediatric cancer in Nebraska?
Centers for Disease Control and Prevention (CDC) data indicate that Nebraska has the 7th-highest rate of paediatric cancer in the United States, higher than anywhere in the country outside the northeast. Also, while haematological cancers are typically the most common among children globally, brain tumours are the leading paediatric cancer in Nebraska.
Coulter has insisted on taking a slow, measured approach to unraveling the mystery of these malignancies in the state. “The public wants answers, and I can completely understand that, but we're taking a rigorous scientific approach without conjecture,” he says.
That has resulted in almost 10 years of epidemiological research by the PCRG. Coulter believes that molecular epidemiology is an important piece of the puzzle. “If we identify clusters of increased incidence in Nebraska, we look at them in the context of either geopolitical constructs like counties, or environmental factors like watersheds,” he explains. “Then, we can perform molecular profiling on those tumours to see if there’s a molecular signature in that area of higher incidence — beyond what we see in the United States as a whole — to find what might be driving it.”
To that end, Coulter now collaborates with counterparts in Iowa, Kansas, Missouri, and Wisconsin, many of whom are just beginning to organize broad state-level inquiries. “We chose these states strategically because of their similarities with Nebraska, and also for key differences from one another in terms of population, communities, environment and more,” he says. “We’re looking at issues together and launching multiple pathways of research, including water quality, and how paediatric cancer care is delivered.”
Ann Anderson Berry, vice president of research at Children’s Nebraska, and executive director of the CHRI, notes that the PCRG is structured to get research findings to the public more quickly. “Amenities, such as easy access to statisticians and scientific writers sound simple, but they make our investigators so much more productive,” she says.
The PCRG tackles paediatric cancer from multiple angles, focusing on epidemiology, pathology, clinical trials, and quality of care. Their efforts span from understanding cancer rates in rural areas of Nebraska to developing resources like animal models for research. They also prioritize survivorship research in collaboration with Children's Nebraska Survivorship Clinic, while also fostering the growth of younger researchers through fellowships and lab experiences.
Coulter is proud of what’s been accomplished so far in paediatric cancer research in Nebraska. But he’s keenly aware of how much more there is to do, based on the realities of limited US paediatric cancer funding coupled with elevated paediatric cancer rates in Nebraska. The demand for funding here far exceeds what is provided by both government sources and donors.
Expanding reach to rural communities
Much work is also needed to make paediatric cancer care more accessible. Most of this care in the United States is provided at an academic-based institution, like a research hospital, simply because it takes a large, multidisciplinary team of experts and robust infrastructure.
In Nebraska, accessing cancer care for children can be challenging for rural families. The state is 430 miles wide, yet the only two hospitals that can provide this care — Nebraska Medicine and Children's Nebraska — are located 4 miles apart in Omaha, on the state’s eastern border.
“The number of people who have to travel so far from their rural community to access this care is a
unique social determinant of health,” Coulter says. “In Nebraska, as we search for ways to alleviate this, we believe these solutions can also be implemented in other rural states.”
And the paediatric cancer treatments also need refinement, says Anderson Berry. “We're still using the same treatments as two and three decades ago on kids,” she explains. “That's part of our mission: not only to understand and prevent paediatric cancers, but to develop more effective, less harmful treatments.”
Such thoughts are never far from Gary Peters’ mind. Although Jacob had suffered several relapses, he died from treatment-related adverse events, not the lymphoma itself, Gary says.
“All too often, the treatment that we give children is the same given to adults, while we try to figure out exactly what the right dose is for a child, to get a positive outcome without lasting harm,” Coulter says. “We must do better.”
The elements being put in place in Omaha are positioning the PCRG to make clinical and research contributions that will do exactly that, with an impact to be felt far beyond Nebraska.