Why adolescents and young adults with cancer are falling behind

Adolescents and young adults with cancer who are navigating life between childhood and early adulthood face a unique set of challenges. Despite overall improvements in cancer survival rates, this group has not experienced the same gains as younger children or older adults. Researchers are working to change that by addressing not just treatment, but also the financial, emotional, and practical barriers that affect care.

We spoke with Melissa Beauchemin, Ph.D., RN, a pediatric nurse at Columbia University Irving Medical Center (CUIMC) and researcher at the Herbert Irving Comprehensive Cancer Center (HICCC), about how Columbia is working to improve outcomes for young adults with cancer—through financial screening, expanded access to supportive care, and clinical trials tailored to meet this group’s specific needs.

What is AYA, and why are researchers focused on this age group in cancer care?

AYA stands for Adolescent and Young Adult, typically defined as people between the ages of 15 and 39 at the time of their cancer diagnosis. It’s a broad and diverse group that historically hasn’t fit neatly into either pediatric or adult oncology care systems.

For years, data showed that AYAs weren’t experiencing the same improvements in cancer outcomes that younger children and older adults were. Pediatric cancer is one of the great success stories of modern medicine—survival rates have improved dramatically over the last 50 years. But adolescents and young adults were falling through the cracks, with lower survival, fewer clinical trial opportunities, and unique challenges related to care.

This group is also often in a stage of life full of transition—starting college or careers, moving out of the home for the first time, navigating insurance—and a cancer diagnosis can be extremely disruptive. So now researchers and clinicians are working to better define and support AYA patients across the cancer care continuum.

What kinds of care challenges and health disparities are we talking about for AYA patients?

AYAs are less likely to receive timely, guideline-concordant care. Clinical trial enrollment is lower. There are higher rates of treatment interruptions, and adherence to treatment can be an issue—especially compared to pediatric patients who often have more family or institutional support.

From a health equity lens, the AYA population is especially vulnerable to gaps in care, financial hardship, and long-term survivorship issues. AYAs who come from lower-income backgrounds, or who are part of racial or ethnic minority groups, are even more likely to fall through the cracks. Add in language barriers, immigration status, or insurance instability, and the risk doubles.

You’ve done a lot of work around financial toxicity in cancer care. How does that affect AYAs in particular?

Right—what we’re really talking about is financial hardship due to cancer, and it shows up differently in AYA patients.

You have these young adults who were just getting started in life—maybe they’re in college, or early in their careers—and suddenly, they can’t work, they lose insurance, or they’re hit with massive out-of-pocket costs. Then there are patients already living with material hardship—using SNAP benefits or Medicaid—whose cancer journey is shaped by long-standing social challenges.

And increasingly, we’re also talking about time toxicity—two-hour commutes to treatment, missed shifts, loss of hourly wages. Especially in the gig economy for those without paid leave, every medical appointment comes at a cost.

Does most of your research focus on supporting AYAs facing financial hardship? How does your financial navigation intervention work in practice?

Yes, a major focus of my research is developing and testing financial navigation interventions for AYAs with cancer. During my postdoctoral training with Dr. Dawn Hershman, we interviewed AYAs with cancer and used this information to adapt an adult-focused model to address the unique needs of AYAs. We pilot-tested this [in Contemporary Clinical Trials Communications], and now we’ve launched a randomized clinical trial with 80 AYAs—we just began recruitment after receiving IRB approval.

The intervention uses a hybrid delivery model. We pair a digital tool, FindHelp.org, which helps users locate local resources, with personalized, phone-based support from the Patient Advocate Foundation (PAF), which specializes in case management services to address medical financial hardship. Through this model, we aim to match patients with the level of support they need—some may benefit from tools and guidance, while others require more intensive, ongoing navigation.

We’re also developing strategies to improve financial toxicity screening. Broadly, my research is focused on two key questions: how do we identify those at risk of or experiencing financial hardship, and how do we intervene effectively to support them?

You mentioned survivorship care earlier. What’s happening—or not happening—there?

A lot of AYA patients never make it to survivorship care. Some of it is psychological—they want to move on. But many just can’t make it work logistically. They’re working jobs without time off. They’ve lost insurance. The specialty center is far away.

In qualitative interviews that I helped with in a recent study with a colleague, many survivors 10 or 15 years out reported that they wished someone had asked them sooner if they needed survivorship care. That’s a driving force in our work—we’re trying to start these conversations earlier and support the transition off treatment.

How do you see this work shaping the future of cancer care—both at Columbia and beyond?

We’re already making real progress. There’s now an oncology financial navigation program at our hospital, with full-time staff focused on medical billing and co-pays. Our team works closely with them and refers patients who meet their criteria.

What’s exciting is that our research is starting to influence systems—how we screen, how we triage patients to support, and how we think about equitable care delivery in a precision medicine framework. Instead of matching patients to a therapy based on a biomarker, we’re matching them to interventions based on their social phenotype—their needs, vulnerabilities, and life circumstances.