Pediatric cancer survivor Max Penzer goes to Capitol Hill to advocate for research bill

Max Penzer recalls a strong pain course through his leg while running at his Pennsylvania sleepaway camp.

Camp staff took Penzer, then 10, to get an X-ray and doctors told him to immediately see a specialist.

His parents drove overnight from Long Island to collect him and they went straight to New York Presbyterian Hospital in Manhattan.

"I thought I'd be in and out and come right back the next day," Penzer said.

But Penzer never returned to camp.

Doctors diagnosed Penzer with osteosarcoma, or bone cancer, and he went through nine months of map chemotherapy, which used a combination of three drugs to treat the rare cancer.

Now 21, Penzer has dedicated his life to pediatric cancer research. The Melville resident will travel to Capitol Hill on Friday to advocate for a bill to fund the use of artificial intelligence in childhood cancer research.

He will join hundreds of other pediatric cancer survivors at the annual youth advocacy event Climb the Hill in Washington, where they will meet with lawmakers to push for legislative change. September is Childhood Cancer Awareness Month.

"We want to make sure that children aren't really being left outside of the conversation," Penzer said.

The bill, H.R. 9632 — Accelerating Innovation (AI) for Kids with Cancer Act, would ensure $100 million in federal funding to incorporate artificial intelligence into childhood cancer research over five years.

It was introduced to the House of Representatives by Rep. Michael McCaul (R-Texas) on July 9.

Pediatric cancer research

Penzer said childhood cancers, including osteosarcoma, receive significantly less advocacy and funding compared with cancers that affect adults.

About 4% of federal funding for cancer research goes to pediatric cancers, Dr. Matteo Trucco, director of the Children's Cancer Innovative Therapy Program at the Cleveland Clinic Children’s Hospital, told Newsday.

For rare cancers such as osteosarcoma, which affect about 400 children each year, that funding is even smaller.

"Compared to research in adult cancers, pediatric cancer is unfortunately lagging behind greatly," Trucco said. "With that little amount of money being divided up among the dozens of pediatric cancers we see, it's just progress isn't happening as fast as with some adult cancers."

About 16,000 new pediatric cancer cases are diagnosed each year, Trucco said. But biotech companies are more likely to research illnesses with higher numbers, such as lung cancer, which affects about 200,000 adults, per year.

"It's a small number, and so it makes it that much harder to study because there's less patients to learn from," Trucco said. "But it doesn't mean that those patients and those cancers don't need the funding to do the research, which is just as complex as more prevalent cancers."

Penzer said he realized the importance of advocacy as he grew older.

While undergoing treatment, Penzer said, he didn’t want to acknowledge his cancer and refused resources such as seeing a psychiatrist and speaking with other patients.

"I pushed it all to the side, and I think reflecting on that now, it just made my treatment even more difficult because I wasn't very open with myself," he said.

After 10 years of remission, he has used advocacy to make peace with his illness. He and his sister will travel to Capitol Hill representing pediatric osteosarcoma nonprofit MIB Agents.

"I think advocacy's really given me an outlet to turn my pain into purpose and to really help me reflect on my survivorship," he said.

Advocate and researcher

He became interested in computational precision medicine, or using technology to study genes, after learning 30% of osteosarcoma patients didn’t respond to treatments.

"I think that's really instilled in me an interest in using these genomic and transcriptomic sequencing tools to create more personalized treatments that aren't just disease specific, but patient specific," he said.

The past two summers he researched with Memorial Sloan Kettering. He also is an advocate for Pediatric Cancer Data Commons, which works with the University of Chicago to consolidate pediatric cancer data.

Penzer, who just began graduate studies at Dartmouth Geisel School of Medicine in New Hampshire, will study computational precision medicine.

Through his research, Penzer learned children were at a "massive disadvantage" in terms of data collection because researchers must first obtain parental consent.

This hurdle often allows child illness research to be overlooked and for artificial intelligence to focus on adult-related illnesses.

Penzer said, like funding, the increased use of artificial intelligence could be used primarily for adult cancers while overlooking pediatric cancers.

"And if they're being left out of this, then the models that we're building are going to be biased against children, and that needs to be considered," Penzer said.