When a Child is Treated for ALL, a Family’s Financial Pain Unfolds Over Time, Study Finds

Multiple surveys over the past 20 years have found that most Americans are an illness away from financial turmoil; a poll taken by Gallup and West Health in 2020 found that 50% of the public feared they would go bankrupt over a major health event.¹

Thus, new findings that describe the financial hardship faced by families with a child being treated for acute lymphocytic leukemia (ALL) are not surprising: nearly a third of these families develop “catastrophic financial toxicity” during the child’s treatment, such as being unable to afford food or losing at least 25% of the household income, a level that published literature considers catastrophic.²

What’s illuminating is just how this disaster cascades over a family, first slowly and then with great effect, often 6 months after treatment starts.

Screening families up front will not catch everyone at risk, according to Daniel J. Zheng, MD, MHS, attending physician in the Division of Oncology at Children’s Hospital of Philadelphia. Zheng shared the study results Saturday at a press conference during the 67th American Society of Hematology Annual Meeting & Exposition in Orlando, Florida, ahead of formal presentation Sunday.

Zheng started with a story that illustrates what families face when cancer strikes a child.

“I was sitting in clinic one day waiting for my patient, a young child with leukemia who was scheduled for a chemotherapy appointment, when I received a message from his nurse navigator that the family was not going to be able to make it and they needed to reschedule,” Zheng said. It turned out that one of the parents had also received a challenging medical diagnosis. As the parents struggled to find childcare for the other children, someone had broken into the family car that morning.

A nurse practitioner said something that Zheng wrote down keeps to this day: “What's so sad is that for some of our families, their child's cancer diagnosis is not the hardest thing they're facing.”

Zheng reported findings gathered as part of the Dana-Farber Cancer Institute ALL Consortium Trial 16-001 (NCT03020030). The study involved pediatric patients up to 22 years of age with de novo B- or T-cell ALL who were enrolled in a clinical trial at 1 of 8 cancer centers in the US and Canada between 2017 and 2021; those younger than 18 years of age were eligible to opt in to the correlating household material hardship (HMH) study at the time of consent to the clinical trial. Investigators uncovered the nuances of financial toxicity by asking parents and guardians of the children with ALL to complete surveys on their status not just within a month of trial enrollment, but also at intervals of 6, 12, and 24 months.

Financial toxicity was the primary end point, defined by 2 variables:²

• development of any new HMH domain (food, housing, or utility insecurity) seen at 6-24 months compared with baseline and
• the loss of at least 25% of annual household income at 6-24 months compared with baseline.

Investigators used the Aalen-Johansen method to measure the cumulative incidence of new HMH and catastrophic income loss in the presence of competing risks of coming off study, such as coming off the protocol therapy, patient death, or relapse.

The Disruption of ALL to a Family

It turns out that for all the advances in treating pediatric ALL, the reality remains that treatment takes 2 years of multiagent therapy—causing 200 patient encounters and 40 inpatient days. “That's a lot of disruption to a family's day-to-day life,” Zheng said. All those medical visits translate into transportation costs, time off from work, or even a parent quitting their job.

Parents or guardians were asked questions that would reveal problems with food or housing insecurity or problems paying utility bills. For housing, parents were asked, “Was there a time you were not able to pay the rent or mortgage on time?”

The figure of 25% of a family’s household income, Zheng said, was based on published literature defining that level as a “catastrophic” health expenditure.

Among 422 participants, 15% were Hispanic and 7% were non-Hispanic Black; 23% were single parent households, and 40% reported an annual household income less than 200% of the federal poverty level. Results showed the following:²

• At baseline, 115 (27%) reported HMH at baseline.
• The cumulative incidence of any new HMH was 19.3% (95% CI: 15.9-23.5) at 6-months, 27.7% (95% CI: 23.8-32.4) at 12-months, and 30.0% (95% CI: 25.9-34.7) at 24-months.
• The cumulative incidence of catastrophic income loss was 20.3% (95% CI: 16.7-24.7) at 6 months, 28.6% (95% CI: 24.5-33.5) at 12 months, and 31.5% (95% CI: 27.2-36.5) at 24 months.
• Among 307 families with no baseline HMH, the cumulative incidences of any new HMH or catastrophic income loss at 24 months were 24.3% (95% CI, 19.9-29.6) and 27.9% (95% CI,23.1-33.7), respectively.
• In multivariable modeling, families of children who identified as non-Hispanic Black (RR 3.5; 95% CI, 1.7-7.3), were living in a single-parent household (RR 2.1; 95% CI, 1.3-3.2), preferred a non-dominant language (RR 2.1; 95% CI, 1.2-3.6), or had baseline household income less than 200% federal poverty level (RR 1.8; 95% CI, 1.1-2.9) were more likely to develop new HMH during treatment.

“By 24 months, 30% of families had experienced new HMH and 31.5% of families had experienced catastrophic income loss at some point during their child's cancer therapy,” Zheng said. “When we look at the specific domains of household material hardship, this appeared to be predominantly driven by the development of new housing insecurity.”

What’s notable, he said, is that 1 in 4 families who had no household material hardship when their child was diagnosed went on to develop a hardship. Zheng said the results highlight the need to check in with families repeatedly throughout the course of a child’s treatment.

Zheng said he recommends both benefits counseling and direct cash payments as ways to deal with financial toxicity—the needs of families are so varied that trying to administer programs for food or housing might miss some families. With more than 90% of children with ALL likely to survive their cancer, the need to not leave treatment-related financial toxicity as a permanent scar is enormous.

“This can't be the type of thing where you meet a family at diagnosis, they get an initial screen, and then you just assume that the family is going to be fine for the subsequent 2 years,” he said. “This also brings up the critical need for family-centered intervention,” which is the subject of ongoing research by his coauthors.

References

1. Witters D. 50% in US fear bankruptcy due to major health event. Gallup. September 1, 2020. Accessed December 6, 2026. https://news.gallup.com/poll/317948/fear-bankruptcy-due-major-health-event.aspx
2. Zheng D, Robinson E, Flamand Y, et al. Cumulative incidence of household material hardship and income loss as measures of financial toxicity during pediatric acute lymphoblastic leukemia (ALL) treatment: A report from the DFCI ALL 16-001 Trial. Presented at: 67th American Society of Hematology Annual Meeting & Exposition, December 6-9, 2025; Orlando, FL; Paper 710.