Taking “Patient-Centered” From Maverick to Mainstream

When Matthew Zachary was diagnosed with a rare pediatric brain cancer in 1996, he was many things. A college student. A concert pianist. A self-described “audio nerd” who could not imagine life without enjoying high-fidelity vinyl music.

It was clear to him, as he shuttled between doctors at New York University and Memorial Sloan Kettering Cancer Center, that the experts eyeing his one-of-kind case were focused only on his cancer, and not on the 21-year-old fighting the disease.

Matthew Zachary | Image credit: LinkedIn

Although Zachary remains grateful for the surgery and radiation therapy that saved his life, he still bristles at the fact that no one asked about his treatment goals or his quality of life during a protocol that was brutal at times.

To put it bluntly, he said, “I felt like a piece of meat.”

Zachary will be the keynote speaker at the 2024 meeting of Patient-Centered Oncology Care^®, hosted by The American Journal of Managed Care^®, where he will address providers, pharmacists, payers, policy experts, and patient advocates in cancer care landscape now vastly different than it was a generation ago. The meeting, taking place September 12-13, 2024, in Nashville, Tennessee, has the theme, “Innovations in Cancer Care: Tales From the Front Lines.” It invites those who involved directly in cancer care to share what they’ve learned, with the expressed goal of making the treatment experience better for patients. (Registration is here.)

Today, concepts of goal setting, shared-decision making and pulling back on regimens that are too harsh are not just wishful thinking—they are built into standards from the National Comprehensive Cancer Network and the American Society of Clinical Oncology. Payment models tie quality of life metrics to reimbursement. And that’s in no small measure because patients like Zachary have spent years speaking out about their experiences and demanding that the health system do better.

Zachary has shared his story with any audience that will listen. He founded the nonprofit Stupid Cancer to offer a platform for young adults with cancer, produced an award-winning documentary and was a podcaster before the term existed. He’s a well-known advocate who has fueled change with humor and a willingness to say what he thinks.

Today, Zachary speaks up for others but is candid that as a 21-year-old, it was his godfather, trained in genetics, who spoke for him and helped him make a crucial decision to forego the recommended course of chemotherapy after he finished radiation. Zachary’s medical team was stunned. They were unaccustomed to being told “no.” But Zachary’s “Uncle Jay,” had researched the chemotherapy side effects and knew the regimen would cause nerve damage in his hands, robbing him of ability to play the piano, along with hearing loss unacceptable to any professional musician.

“In my particular case, biologically, there was no chemotherapy at the time that worked for brain cancer, chemotherapy back then didn't break the blood brain barrier,” Zachary said. “So, it was absolutely unnecessary.”

Zachary said the episode points up a host of problems and inequities in the health care system. He had an advocate with special knowledge of what the drugs of that era could and could not do, but most people did not.

“Who knows these things when you in those moments, when you're terrified?” he asked. “And then who's in charge of telling me? Do they have an agenda or not? And how do I stay protected?”

Zachary can’t imagine his life after cancer if he had not been able to record albums or enjoy music. He knows he is fortunate that he had someone in his corner. Still, he doesn’t hold back when asked to reflect on how his treatment experience would have been different if today’s standards had existed when he was a scared 21-year-old.

“I would have felt more seen. It would have been more humane if they [had] cared about me and not just the biology, if this wasn’t about data or pride of a peer-reviewed paper—arguing over this unique cancer. And I would have had a little more of an objective perspective on what I was actually facing.”

As patients have become better consumers, with access to more information, Zachary believes patients with cancer have a stronger voice in their care. “I’d like to believe that happens more frequently now.”

For more information about Patient-Centered Oncology Care^®, visit our registration page.