Pediatric Cancer Creates Long-Term Financial Challenges for Patients, Families: Cherie Daly, MD

A pediatric cancer diagnosis can create financial toxicity that extends far beyond treatment, affecting families through caregiving demands, lost income, and, for many survivors, decades of long-term health and financial consequences.

In part 1 of an interview with The American Journal of Managed Care^® (AJMC^®), Cherie Daly, MD, director of scientific affairs at the Pediatric Cancer Research Foundation (PCRF), explained the financial realities families face after a child’s cancer diagnosis, how financial hardship can affect treatment access and adherence, and the nonmedical costs that often catch families off guard.

Drawing on both her work at PCRF and her personal experience as the parent of a childhood cancer survivor, Daly highlighted the often-overlooked financial challenges that accompany pediatric cancer care.

This transcript has been lightly edited for clarity.

AJMC: Cancer remains the leading cause of disease-related death among children in the US. How would you describe the financial reality families face when a child receives a diagnosis?

Daly: I think people immediately think of the cost of medicine when a child receives a diagnosis of pediatric cancer. I think the system is pretty well set up to help with that part of the treatment. You have institutions like St. Jude Children’s Research Hospital and Ronald McDonald House, which support travel to institutions. I must say, I've lived in America for 10 years, and I've worked and lived globally. Different countries have different impacts, but I do feel that that is pretty well covered.

What is not covered is the financial toll on the family beyond what is obvious: the lack of income of parents having to give up their job to look after their child, the impact on siblings, and the impact on mental health. Also, in pediatric cancer, unlike adult cancer, where you are often at the end of your life, the loss of future income. These children, unfortunately, have long-term sequelae that end up in them not being able to be part of the workforce moving forward or being in wheelchairs. There are a lot of brain tumors in pediatric cancer, so children are ending up paralyzed. Children are ending up with long-term issues with organs, with their hearts, with their kidneys, with their livers, and on ongoing chronic medication.

I think that is the hidden cost of pediatric cancer, which I think, until you really start to think of it, you don't really realize. Additional things as well, like fertility protection. Pediatric patients often want to store their sperm or their eggs before treatment; there's so much that goes into it that I think is not obvious to people until you're on that journey or you’re supporting families in that journey.

AJMC: Going off of that, how does financial hardship shape treatment access and adherence throughout the pediatric cancer journey?

Daly: Adherence is so important. If patients aren't adherent to their treatment, then they start to fall off protocols of treatments with long-term benefits. Like the antibiotic that I think most people are familiar with, finish your antibiotic; the same thing with pediatric cancer treatment. A lot of these treatments have maintenance phases.

If you're in financial hardship, it's a long journey; it's not a short journey. So, you stop treatment, maybe because you have financial hardships, or you can't get to the center to get your treatment, and I think this is a huge impact. This, as well, is going to impact the long-term outcomes and, even more, the financial toll on families when you are relapsing. So, instead of just being able to have a shorter term, you're now having more relapses if patients aren't completing their full treatment, which is imperative for pediatric cancer, for any cancer.

AJMC: Could you elaborate on the nonmedical costs that catch families off guard the most, particularly early in treatment?

Daly: I think some of the nonmedical things are preparing for that journey as well. For instance, fertility preservation could be something. Preparing for a caregiver to be away from the home long-term. How are the siblings going to get to school, to aftercare? One parent might have to be completely removed from the workforce, so there is a loss of income of an entire salary in a double-salaried family. Who's going to be at the child's bedside? Unlike an adult, whom you could potentially leave at the hospital, you need a parent to go with that child and to take time off work. Some workplaces are more understanding than others, but more often than not, the statistics show that almost 40% of the household income is lost due to pediatric care for one of the caregivers having to be there permanently with that child.

Also, siblings, support for the siblings, and mental health support are things that families face, so dealing with that and the mental health aspect of it, people might need to go for therapy; parents themselves might need to go to therapy. It is such a huge toll on a family, and it's a snowball effect of all of these together that really compounds and can send a family into mental and financial freefall, to be honest with you.