From “Inside Indiana Business, with Gerry Dick” 10/31/2013
Drew Genneken says it’s never easy to share his son Tyler’s story. Diagnosed at 11 years-old with leukemia, Tyler battled the disease with same competitive spirit he used during his football games. After seemingly defeating the biggest opponent of his life, the cancer relapsed, and Tyler lost his battle at age 14. Though painful each time, Drew talks about his son’s experience again, and again, and again for the purpose of calling attention to T-cell acute lymphoblastic leukemia (ALL)—a disease doctors have told him faces a daunting opponent—a desperate lack of funding.
“The doctors say if there was enough money there, we could make this stop happening,” says Drew. “It’s frustrating to know there’s a cure out there, and it’s waiting for the perfect number of dollars to be applied so it can be found. So much benefit comes from research in pediatric cancer, but yet the amount of funding and attention given to it is so small compared to other forms of cancer.”
It’s this lack of funding that makes the recent $250,000 Hyundai Hope on Wheels grant to Riley Hospital for Children at Indiana University Health so meaningful to the research team.
Dr. Mark Kelley, who leads ALL research at Riley, says because the patient population with ALL is relatively small compared to other cancers, it receives little funding from the pharmaceutical industry and relies on the National Cancer Institute (NCI) for “virtually all” research dollars. Of the NCI money earmarked for supporting cancer research, only four percent funds childhood cancer.
“We’re trying to find novel discoveries for treatments for all of the children’s cancers,” says Kelley, associate director of the Herman B Wells Center for Pediatric Research, “but we’re particularly focused on the ones where they don’t have good treatments.”
That’s why the Riley team has an intense focus on the most challenging group within leukemia: “relapsed” and “refractive” forms of the disease. Kelley says ALL has a good survival rate of 80 to 85 percent, but Riley research is targeting kids like Tyler who fall in the remaining 15 percent of patients who relapse—those who seem to have beaten the disease, only to face it a second time in a more aggressive form. A smaller portion of children have refractive ALL, meaning they don’t respond to initial treatment at all.
Kelley explains that the current federal landscape adds even more urgency to the researchers’ mission; due to sequestration and budget cuts, he says funding levels “are back to where they were 12 years ago—it’s like a loss of 12 years.” With the recent federal government shutdown adding fuel to the fire, Kelley believes the Hope on Wheels grant is even more significant, because it helps fill a widening gap.
“[With the shutdown], there were no clinical trials going on, [trials] were taking no new patients, grants weren’t being given out, I’m on review committees that were on hold, websites were shuttered,” says Kelley. “It’s very worrisome. We’re not crying wolf, this is really a tough time. Considering the time it takes to move anything from the bench to the clinic—add in the shutting down or slowing of basic research and labs being reduced—10 years from now when we say ‘Where are all of the new discoveries?,’ part of it is being sewn right now because things are so tight.”
Kelley leads basic scientific research in his lab, but to try to push discoveries to the market as quickly as possible, he’s also Chief Scientific Founder of Indianapolis-based Apex Therapeutics. The startup, which recently earned a Phase 1 Small Business Innovation Research grant, has discovered a new therapy for ALL, which could hold promise for refractive and relapsed forms of the disease.
“The bottom line is, we want to cure all of the kids—we want to make sure no child dies of cancer,” says Kelley. “Apex’ goal is to get [treatment] to the kids as quickly as possible, because every day, there’s a kid getting cancer and dying of these various cancers, and we want to stop that. Time is of the essence.”
And that’s why Drew swallows the pain and tells Tyler’s story again, and again, and again.
“It’ll never be simple to talk about the things Tyler went through and the anguish that comes with watching your child suffer from something you can do nothing about,” says Drew. “That’s why our family and friends are motivated now to try to make this situation not occur. Probably not tomorrow or next year, but maybe one day in the future, we can look back and say we had some small hand in assuring there’s not another Tyler.”