Cancer Survivor Fights For Children's Greater Access to Treatment

Male student in black sweatshirt looks over his left shoulder.
Benjamin Lepper ’25, a pediatric cancer survivor, is advocating for greater access for children in need of life-saving cancer treatment.

Diagnosed in his late teens, cancer survivor Ben Lepper ’25 is using his experiences and his time in remission to advocate for federal changes to streamline access to childhood cancer treatment.

When it comes to improving access to care for childhood cancer patients, Benjamin Lepper ’25 uses his inner strength pulled from personal experience to advocate for change.

This fall, Lepper joined advocates from the New England region of The Leukemia & Lymphoma Society (LLS) in Washington, D.C., to lobby Massachusetts Congressional members in support of the bipartisan Accelerating Kids’ Access to Care Act. The bill would improve children’s access to needed out-of-state health care by streamlining the Medicaid provider screening and enrollment process.

“The bureaucracy needs to stop. It pits states against each other when determining which state will cover the cost and there isn’t time for that. Childhood cancer patients need care immediately,” Lepper, a pediatric cancer survivor, said.

According to Tara Rivard ’12, executive director of the LLS New England Region, screening and enrollment processes in a child’s home state Medicaid program can cause “burdensome, unnecessary delays for time-sensitive care that can lead to a child’s condition worsening. No childhood cancer patient should have to wait weeks or months for time-sensitive treatment because their provider or care team are in a different state. It is imperative that everyone achieves a level of at least basic understanding because not only do these policies affect all of us and our loved ones, but we can personally influence change and progression in policy,” she said.

I remember everything. That’s caused me some mental side effects, like the physical side effects from chemo, but I can do something about it. That’s what I’m here to do.

Benjamin Lepper ’25

In 2019, two months shy of his high school graduation, Lepper was diagnosed with acute lymphoblastic leukemia. He started treatment at Dana Farber immediately.

“It’s never a good time for this, but I missed all the fun at the end of my senior year in high school. I nearly missed graduation, but was able to walk while on antibiotics,” he said.

Already committed to Holy Cross, Lepper delayed his enrollment by two years so he could complete his treatment before moving to Mount St. James.

“Things are undoubtedly great in my life right now, but I can’t keep from asking, ‘What if?’ What if I was in the workforce now? I take solace in the fact that the positive experiences I’ve had might not have happened if I hadn’t gotten cancer, but what’s the tradeoff? I’m probably never going to have an answer for that,” he said.

Holding on to those experiences, including interning with the LLS, Lepper said he wants to help ensure other pediatric cancer patients also have opportunities.

“Being diagnosed and treated for blood-cancer in your late teens is a blessing and a curse. If you’re young, you don’t really remember what happened, but you also can’t really do anything about it,” he said. “I remember everything. That’s caused me some mental side effects, like the physical side effects from chemo, but I can do something about it. That’s what I’m here to do.”

As an LLS intern, Lepper supported several fundraising initiatives, including the group’s key regional event, Light The Night. He shared his personal story with corporate executives and volunteer leaders during the LLS Corporate Recruitment Event and inspired new partnerships, Rivard said. He even stepped up to be the emcee at the gala, using his talents to shine in the moment.

A self-described “non-science minded person,” he’s discovered that government advocacy is his way of spreading the word and encouraging those with the ability to do so to make changes that increase access to timely treatment for children with cancer.

Lepper is now four years in remission, two years post-treatment and five months from reaching his April 2024 cure date, a period after which the chances of the cancer returning significantly decrease.

“It kind of doesn’t feel real, but it is. I’m here and able to change the world and now that I know how capable all of us are I fully intend on changing things,” Lepper said.