Pediatric Cancer Carries Greater Financial Toxicity Than Adult Disease, Driving Calls for Systemic Change

Cancer often creates more severe financial toxicity for pediatric patients than for adults, with burdens that begin at diagnosis and can persist for decades into survivorship, prompting calls from experts for systemic change.

The Pediatric–Adult Divide in Cancer Costs

Cancer care can impose substantial financial burdens on patients and their families due to the costs of treatments, medications, insurance deductibles, travel, and other out-of-pocket expenses.¹ These costs vary based on factors such as the type of therapy, the facility where care is delivered, and geographic location. Beyond direct medical expenses, patients and families may also incur costs related to specialist referrals, transportation, parking, and temporary lodging during treatment.

The high cost of cancer care can lead to financial hardship, often referred to as financial toxicity, which affects both patients’ physical and emotional well-being. Families may be forced to make difficult decisions between paying for treatment and meeting basic household needs. They may also have to delay medical appointments or prescription refills, deplete savings, or rely on credit cards. These financial pressures can interfere with treatment adherence and follow-up care, ultimately affecting long-term health outcomes and quality of life.

Although financial toxicity affects those of all ages, it presents unique challenges in pediatric oncology. Hospital stays for children with cancer cost approximately 2.5 times more than those for adults.² This disparity is largely driven by the intensive, highly specialized care required for pediatric cancers such as leukemia and brain tumors, which often require longer hospitalizations and more complex treatment regimens.

The long-term economic consequences are also fundamentally different for children. Unlike many adults, who are diagnosed with cancer later in life after decades in the workforce, pediatric survivors may face 60 to 70 years of financial toxicity, Cherie Daly, MD, director of scientific affairs at the Pediatric Cancer Research Foundation (PCRF), explained in an interview with The American Journal of Managed Care^® (AJMC^®).

“Adult oncology is a lot of patients at the end of life; they've retired, and they have their family looking after the elderly,” she said. “It's those children that are our future. When that future and those additional 60 to 70 years ahead are going to be a financial burden, it's the reverse of what it should be.… You talk about the financial burden, the financial toxicity, of adult cancer; pediatrics brings a whole new meaning to that.”

Immediate Financial Strain at Diagnosis

Although financial toxicity has lifelong consequences for pediatric cancer survivors, its burden on families begins at diagnosis. Daly explained that families often first worry about the cost of treatment, but pediatric oncology centers and charitable organizations help offset many of these direct medical expenses. For example, St. Jude Children’s Research Hospital ensures that families never receive a bill for treatment, travel, housing, or meals, and the Ronald McDonald House provides free or low-cost housing near pediatric hospitals.

Instead, Daly noted that the greatest financial strain comes from uncovered expenses. A large registry analysis of families across 48 US states found that 92% of the financial burden associated with pediatric cancer stems from nonmedical expenses.³ Housing expenses, particularly mortgage and rent payments, were the primary sources of financial distress, accounting for 62%.

The burden is compounded when a parent leaves the workforce to provide full-time bedside care. Daly highlighted that, as a result, US families lose an average of 40% of their total household income. In an interview with AJMC, Danielle Fragalla, MSE, CEO of PCRF, said this burden is “double cumbersome” for single-parent households, who must balance caregiving responsibilities with their work schedules.

“Insurance might not cover all expenses, and so then when they’re not working, or they have one less source of income, that tends to add up quite significantly,” Fragalla said.

Daly also emphasized that financial hardship can force families to deviate from treatment protocols, particularly during long-term maintenance therapy. She warned that missed medications, delayed follow-up visits, and interruptions in care can increase the risk of relapse, creating a second financial and emotional crisis that may exceed the burden of the initial diagnosis while jeopardizing long-term outcomes.

The Enduring Cost of Survival

Financial toxicity does not end when treatment concludes; instead, it often follows survivors and their families throughout the lifespan. Fragalla told AJMC that approximately 2 of 3 childhood cancer survivors develop long-term health conditions, including heart failure, hearing loss, and secondary malignancies. These conditions require ongoing medical monitoring and, in many cases, lifelong treatment.

As a result, these conditions can result in substantial and sustained medication costs. Daly noted from personal experience that her son, a childhood cancer survivor, developed severe toxicity of his pancreas and now requires long-term therapy costing more than $1000 per month.

Compounding these clinical and financial challenges, adult survivors of pediatric cancer are denied health insurance coverage at rates exceeding 15% and incur, on average, $800 more in annual out-of-pocket expenses than their peers without a cancer history.⁴ In addition, survivors are more likely to experience unemployment or to work in lower-paying positions, reflecting the lasting physical and cognitive effects of treatment that can limit educational attainment, job stability, and long-term earning potential.

Prioritizing Human Impact Over Economic Return in Pediatric Cancer Care

Because of these factors, Fragalla told AJMC that the US must undergo a “fundamental shift” in how it values children’s health, with clinicians making decisions based on human impact rather than economic return.

“That means corporations, health care institutions, governments, philanthropy, and society recognizing that investing in children is not only the right thing to do; it's one of the most important investments we can make,” she said.

One area where federal policy could make a meaningful difference is addressing the lack of paid family leave in the US. Daly shared that when caring for her son during his cancer journey while living in Denmark, her salary was fully covered, meaning her family did not experience the financial burden often faced by impacted families in the US. A federal paid family leave, therefore, could help families navigate childhood cancer without substantial financial strain, she claimed.

Fragalla added that pediatric cancer deserves the same urgency and resources afforded to adult cancers. She emphasized that there is enough innovation, talent, and funding capacity to invest in both adult and pediatric cancer.

To sustain the pediatric cancer workforce, she urged greater social recognition of specialists, competitive compensation, emotional support, and long-term investment in the field. This includes earlier career exposure, loan repayment, salary support, and mentorship. Fragalla also encouraged stronger institutional investment in teams rather than just individual physicians, as well as protected research time.

“Ultimately, attracting the next generation begins with a simple belief: humanity must matter more than the bottom line, and every child deserves the opportunity to live a healthy, full life,” she said.

Bridging Research and Real-World Relief

In the meantime, PCRF has developed initiatives to help pediatric patients with cancer and survivors striving to lead “normal” lives. While the foundation continues to fund long-term research aimed at advancing cures, Daly explained that PCRF also invests in translational research focused on targeted therapies. By decreasing adverse effects and long-term toxicities, these approaches can have a more immediate impact on patients and may indirectly lessen lifelong medical costs.

She added that PCRF also supports survivors, including through college scholarships for those able to pursue higher education. Since the organization began doing so in 2017, PCRF has awarded 561 scholarships, amounting to over $760,000.⁵

“…We are evolving as a nonprofit and very proud to be able to make a more immediate impact on these families and make sure that these children live a happy, healthy, and productive life and the families can support these children and do not have to deal with all the stress,” Daly said. “The stress of pediatric cancer by itself is immense, having lived through this as a family, but when you add financial burden to that, the stress can be overwhelming for many families.”

Moving forward, Daly emphasized the need to change the narrative surrounding pediatric cancer to make a real impact.

“I think everyone thinks of the immediate toxicity of the cost of a drug, but it just begins there,” Daly concluded. “The children are our future, and we need to invest in them, and we need to invest in the families that are investing in them and supporting them. The more aware we make the general population, the more we can get behind changing the narrative, understanding their needs, and supporting these families.”

References

1. Managing the cost of cancer care. American Cancer Society. Last revised June 26, 2026. Accessed July 1, 2026. https://www.cancer.org/cancer/financial-insurance-matters.html
2. Price RA, Stranges E, Elixhauser A. Pediatric cancer hospitalizations, 2009. Healthcare Cost and Utilization Project statistical brief 132. Agency for Healthcare Research and Quality. May 2012. Accessed July 1, 2026. https://hcup-us.ahrq.gov/reports/statbriefs/sb132.jsp
3. Muffly L, Tardif C, Jonas de Souza. Financial toxicity in children, adolescent, and young adult cancer patients and their families: A large national registry analysis from the Family Reach Foundation. J Clin Oncol. 2016;34(suppl 15):6615. doi:10.1200/jco.2016.34.15_suppl.6615
4. Park ER, Kirchhoff AC, Nipp RD, et al. Assessing health insurance coverage characteristics and impact on health care cost, worry, and access: a report from the Childhood Cancer Survivor Study. JAMA Intern Med. 2017;177(12):1855–1858. doi:10.1001/jamainternmed.2017.5047
5. PCRF scholarship opportunities. PCRF. Accessed July 1, 2026. https://www.pcrf-kids.org/pcrf-scholarship/

‌