Member Blog–I Survived Leukemia Because of a Clinical Trial. Will Future Patients Be So Lucky?

By CAC2 Individual Member Robert Dilley writing about why sustained research funding is essential to progress.

This essay first appeared on April 15 in MedPage Today.

I don’t usually talk about my cancer diagnosis. But as a physician-scientist who survived leukemia at 18 years old and now cares for people facing their own cancer diagnoses, I feel compelled to share my story — because it speaks directly to what’s at stake in medicine today.

The clinical trial that saved my life wouldn’t have existed without robust investment in biomedical research. And as debates over federal research funding continue, I think about whether future patients will have access to the same life-saving opportunities I did.

It was the summer of 2007. I had just graduated from high school and was getting ready to start college when I began experiencing vague flu-like symptoms — low-grade fevers, fatigue, nothing too alarming. My doctor ordered routine bloodwork, mostly out of caution. That same evening, I was admitted to the Children’s Hospital of Philadelphia. The diagnosis: acute myeloid leukemia (AML), a rare and aggressive blood cancer that affects approximately eight in a million children in the U.S. each year.

I was terrified. But I was also incredibly lucky.

Because I was treated at a major academic center, I had access to a clinical trial testing an experimental therapy — gemtuzumab ozogamicin, an antibody-drug conjugate (ADC), given in combination with standard chemotherapy for pediatric AML. The trial was led by the Children’s Oncology Group and funded by the National Cancer Institute through its National Clinical Trials Network.

That treatment saved my life.

I started college a year later with a new sense of purpose. I wanted to become an oncologist — to join the very system that had given me a second chance. Over the past two decades, that goal has shaped my life: medical school, a PhD in cancer biology, residency in internal medicine, and now subspecialty training in hematology and oncology.

Today, I sit across from patients facing the same fear I once did. I counsel them about treatments that exist only because of long-term investment in biomedical research. And I worry that we’re taking that system for granted.

Research doesn’t happen by accident. Clinical trials don’t appear overnight. Every treatment we use at the bedside starts with years — often decades — of basic science, drug development, trial design, and infrastructure. That system depends on funding — and right now, that funding is under threat.

When I was treated, gemtuzumab ozogamicin was the first FDA-approved ADC. Today, more than a dozen ADCs are approved for various cancers, with many more in development. That kind of progress doesn’t happen without sustained research funding.

But most people — understandably — only see the final product: the chemotherapy infusion, the pill bottle, the scan result. They don’t see the decades of science behind it.

That’s why those of us who have lived through the system — as patients, physicians, and researchers — need to speak up.

We need to remind policymakers and the public that biomedical research isn’t just a noble idea. It’s life-saving infrastructure. It’s as essential to patient care as any hospital or medication.

When I sit with a newly diagnosed patient today, I think often about what terrified the 18-year-old version of myself. I think about the clinical trial that saved me. And I wonder: Will we continue to invest in science so that the next patient has the same chance I did?

I hope so. But hope isn’t enough. It takes action, investment, and advocacy.

Biomedical research saved my life. Now it’s up to all of us — clinicians, researchers, policymakers, and patients — to make sure it can save many more.

Robert L. Dilley, MD, PhD is a clinical fellow in hematology/oncology at the Dana-Farber Cancer Institute and Mass General Brigham in Boston.