Reducing Pediatric Cancer Financial Toxicity Requires Support Beyond Treatment: Cherie Daly, MD

In the second and final part of her interview with The American Journal of Managed Care^® (AJMC^®), Cherie Daly, MD, director of scientific affairs at the Pediatric Cancer Research Foundation (PCRF), discussed the long-term financial challenges families continue to face after pediatric cancer treatment, from ongoing medical expenses and survivorship care to lost earning potential and educational needs.

She also examined persistent gaps in financial support, including the lack of paid family leave and financial navigation services. Daly concluded by explaining how PCRF is expanding its efforts beyond research to improve survivorship, mental health, and other resources to help ease the financial burden on families.

This transcript has been lightly edited for clarity.

AJMC: After active treatment ends, what does the financial picture look like for families in the years that follow, especially as survivors face long-term health complications or ongoing surveillance?

Daly: That's so important. So, 50% or more, depending on the cancer type, have ongoing financial burdens. I think the most obvious is something like brain tumors. As I said, wheelchairs, inability to walk, and these kinds of therapies. For example, my son had severe toxicity of his pancreas, and now he's on long-term medication that costs over $1000 a month. There's also effects of the chemotherapy on the heart, so heart failure medications. The ongoing toll, even on long-term survivors, is extremely high.

A lot of children have effects afterwards that they can't stay in mainstream schools, so parents need to find alternative schooling. Parents might need to move states. There are certain states that have better education for people with special needs. These burdens really do not stop when a child finishes cancer care.

As I said earlier about loss of future income in the workforce, adult oncology has a lot of patients at the end of life; they've retired, and they have their family looking after the elderly. With pediatrics, it's those children that are our future, and 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; it should be the other way around. So, pediatric cancer is very unique. You talk about the financial burden and the financial toxicity of adult cancer; pediatrics brings a whole new meaning to that financial burden and financial toxicity.

AJMC: Going off of that, where are the biggest gaps in the health care system when it comes to supporting families financially? And how do those gaps compound the emotional and practical burdens they face?

Daly: I think we were very fortunate. To give you an example, when my son was diagnosed, we were living in Denmark. My salary was fully paid for by the Danish government. I was able to be at my son's bedside, but we had no financial toll due to the loss of income, and I think that is something that there is a massive gap of in the US: the ability to have paid family leave.

To me, that is so important, because you have all the extra costs, and now you're dealing with the loss, often of income to the family. I think if that can be supported by some paid family leave, I think that would be a huge lift and a burden off of families. Financial navigators and oncology navigators to help them navigate that road and help them plan for that future—I think there is a big gap there as well.

AJMC: Lastly, what solutions could make the greatest immediate difference in supporting families through treatment and beyond? How is PCRF working to address these needs?

Daly: PCRF is on research, powering cures for these families. However, we have taken a long and deep look at how we can make more of an immediate impact. Raising funds for research is a long road. Research in itself is a long road, so we're looking very closely at more immediate research. If you have targeted therapies, you decrease the adverse effects. If you decrease the adverse effects, you decrease the cost, so that's not a direct impact, but indirectly, yes, that is going to reduce the financial burden.

We are also looking at survivorship as PCRF, and this is one of our priorities as well. Can we fund research that improves survivorship? That would be a direct cost. Then, we are also looking at the mental health part of pediatric cancer. Again, that will reduce costs. So, everything that we're looking at, we are trying to reduce costs.

We also have a scholarship program for cancer survivors, which is amazing. For cancer survivors who can go to college, we will help fund their college education. We're also looking at investing in life cycle management with regard to investing back into survivors and non-survivors that want to go into pediatric cancer health care, so the nurses and the doctors. We are really looking at this holistically to make an immediate impact on this.

We were founded in 1982, and it was really research-based, but as we look at the immediate need for pediatric cancer, we are evolving as a nonprofit and are 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. 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.

I think this is just such an important topic, and I think bringing awareness to people is important, because I think everyone thinks of the immediate toxicity of the cost of a drug, but it only just begins there, especially in pediatric cancer, because these 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 the needs, and supporting these families.