Federal research cuts hit home for South Florida teen diagnosed with cancer twice

The announcement came out of the blue late on Friday afternoon. 

The National Institutes of Health said it was making a big cut to medical research grants, capping what is known as indirect costs of research to 15% of the total funding awarded, to match what most private donors pay. Until now, NIH grants usually paid 50 to 60% of the overhead of running a research lab, so the cutback has sent shockwaves through the medical research world.

For the Kleppen family, it hit like a punch to the gut. 

!4-year-old Jake Kleppen is an 8th grader at Silver Trail Middle School and an outspoken advocate for childhood cancer research.  He hasn’t been able to physically attend school since he was diagnosed with leukemia last month, his second bout with cancer in his young life. 

“Something that no child should have to experience, really, all kids should have the opportunity to go to school and complain about regular kid stuff, like how do I skip this homework and all that,” Jake said. 

Battling leukemia now, Jake knows the cancer drill. When he was eight years old, he beat Ewing’s Sarcoma. 

“I had basically no childhood, it was spent fighting that cancer and it traumatized me,” Jake said. 

Doctors told Jake’s family that the treatments to fight the sarcoma probably caused him to develop leukemia. Imagine the stress on his parents. 

“It’s devastating, there are no words, it’s heart-wrenching, and it’s the one time you feel there’s nothing you can do to comfort them or help them,” said Marisel Kleppen, Jake’s mother. 

“Really, it affects your mental status and all that and don’t even get me started on the physical,” Jake said, describing the fatigue, pain, and discomfort of chemotherapy. 

Jake will talk about childhood cancer to anyone who will listen. Last year, he joined other cancer-surviving kids in Washington to lobby Congress for more research. 

“We thought that would reach them, and it’s very disappointing that nothing really came of that, in fact, the contrary, they’re pulling funding,” Marisel Kleppen said. 

“I can’t even express how mad I am,” Jake added. 

The Trump administration says the NIH cuts are designed to save money, and that covering 15% of indirect costs is enough. However, current grants usually pay 50 to 60% of the overhead of running a research lab. 

“When you pull this money away you extinguish hope because now no one’s working on it because there is no money for it,” said Oscar Ortiz, founder of the Sebastian Strong Foundation. 

Cancer killed 16-year-old Sebastian Ortiz eight years ago. His father founded the foundation in his son’s name to raise money for childhood cancer research. Ortiz says there’s no replacement source of money for the canceled NIH funding, and explained that there’s not enough profit motive for the big pharmaceutical companies to develop childhood cancer therapies. There simply aren’t enough kids with cancer to create a lucrative market. So government funding is crucial and Ortiz says he does not understand what NIH is doing. 

“It absolutely makes no sense to do this, and it’s the disconnect sometimes between the people making these decisions and the people they impact,” Ortiz said. 

Jake says disease research should obviously not be a political issue, since cancer does not pick sides.

“I feel like if I keep advocating, if I keep spreading awareness, if I keep showing people what we have to go through, then maybe we can wake up one day as a nation,” Jake said. 

Jake would like to hear from you on his Instagram page @jakethevictoriouswarrior. The family also has a GoFundMe account to help pay the huge expenses that come with cancer care.