International Childhood Cancer Day Shines a Spotlight on Challenges in Pediatric Oncology

Burton Eliot Appel, MD

Burton Eliot Appel, MD, discussed key challenges in pediatric oncology care that need further attention and resources in an interview with OncLive®. He also delved into the ways the community can contribute to raising awareness for childhood cancer research.Appel is a pediatric hematologist/oncologist at the Hackensack University Medical Center and Jersey Shore University Medical Center, in Hackensack and Neptune, New Jersey, respectively.

He also explained the importance of recognizing Childhood Cancer Day in pediatric patients with cancer. Appel provided further insights on Childhood Cancer Day, which took place on February 15, 2024, in another interview.

OncLive: What are some of the key challenges in pediatric oncology that need more attention or resources?

Appel: Although we have resources for psychosocial support, there’s always a need for more. Certainly, not every pediatric oncology program has access to what we have [at our institution] because it relies a lot on philanthropy. Insurance companies do not pay for these things and hospitals won’t hire endless numbers of psychosocial support staff. Therefore, we rely a lot on philanthropy. More resources are always welcome.

From a medical point of view, we would like to have better and different options for patients who [experience] relapse. As I said, we throw the kitchen sink at some of our patients [up front], and most of them are cured. However, in the setting of relapse, we need options. One of the challenges in developing better therapies for patients with relapsed disease is that we don’t [see] a lot of relapses. We’re talking about rare diseases.

For example, if you have a type of cancer where there’s maybe 500 kids a year in America who receive a diagnosis and 90% of them are cured that means that 450 of those 500 patients are cured. You’re only dealing with 50 patients a year that may relapse from a particular disease. That’s a very small number of patients to try to do meaningful research on. That’s one of the challenges; it’s a small number of kids, but it’s an important group of kids because we want them to have options.

Dealing with relapse is a big challenge of ours. As I spoke about before, finding better resources for survivorship care, including fertility preservation, is very important. I’d say a lot of these challenges have to do with financial support. However, some of it [has to do with] research.

In what ways can the community contribute to raising awareness and supporting childhood cancer research?

Awareness is always the key. Sometimes, people think that childhood cancer is rare and never going to happen to them or their loved one or anyone they know. Awareness is what you need for advocacy. Who do we need to advocate with? Well, [we need to engage with] the government and other funding resources to support scientific and medical research for childhood cancer. Only a small proportion of the National Cancer Institute’s budget goes to pediatric cancer.

You could say it makes sense because adult cancer is more common. However, we feel strongly that we’re talking about a child’s lifetime, and we need as many research dollars as we can [get]. We also want community awareness to put pressure on our legislatures to do things like mandating better insurance coverage for psychosocial support or for fertility preservation. It makes us very sad when we know that an insurance company will pay for an expensive procedure for an older person that may prolong their life by a year or 2––and that’s great for that individual––but that same insurance company is not mandated to pay for sperm banking. That may cost $750 so that a 17-year-old boy can preserve his sperm and maybe be a father in the future.

We’re talking about a small dollar amount that could have a very big impact, but there’s no mandate for insurance companies to pay for that. It just seems crazy. Therefore, more awareness and advocacy [is vital]. My colleagues have tried working with our legislative advocates to raise awareness around these issues, but it’s not easy. The pace of legislative change moves very slowly.

The other thing I would like to say about community awareness is that it’s very important for people to support their local children’s hospital. I’m not taking anything away from the big programs like St. Jude’s or Boston Children’s Hospital, but we’re here taking care of the patients in the local community. St. Joseph’s Hospital in Paterson, New Jersey, is taking care of their community, and it’s very important to support these programs.

This is not necessarily [said to replace] donating to big programs like St. Jude’s but to remember that local programs are important. We are doing research and taking care of patients as well. That’s how I would think about the community.

What is the importance of Childhood Cancer Day?

[Childhood Cancer Day is important because we get to] remind people that every day of the year there’s a whole team of people that are taking care of children in the community with cancer. Most of our children survive, but we want to give them the brightest future possible. To do that, we need to continue to do research, we need to continue to raise money to make the experience for them in terms of psychosocial support as tolerable as possible, and we need to continue to minimize the extent of life disruption.

[Raising] as much awareness as we can is important. This is because sometimes our success works against us. Sometimes people hear that leukemia is curable, which is great, but it’s not a done deal. There’s still a lot of improvement that we can make, even in our most curable cancers. [We want] to cure a higher percentage of kids, but we also want to be innovative, so that those kids who are cured have as few long-term effects of their disease and treatment as possible.

If you were speaking to the parent of a survivor of childhood cancer, they’d probably be able to describe this much better than I can, because they live with the consequences of what the child’s chemotherapy, surgery, and radiation did. And not just that but what the effect was on their emotional development, and on their relationships with peers. We want the outcome for these cured children to be as good as possible. That takes a lot of research and support.

What would you like to add about the new young adults and adolescents program at Hackensack Meridian Children’s Health?

That’s a very exciting thing because it was recognized almost 20 years ago that adolescents and young adults can be defined in different ways. However, the typical definition [of that population] is people between 15 and 39 [years of age]. This is way beyond the pediatric age, but people in that age group, when they’re diagnosed with cancer, have lower survival compared with younger children or older adults. This is a big group of people and it’s estimated that 90,000 individuals between the ages of 15 and 39 are diagnosed with cancer each year in the United States; it’s a big group.

It's very worrisome to hear that a large group of individuals have lower survival compared with younger kids and older kids. People have tried very hard to figure out why. There are lower rates of clinical trial enrollment. They often have unaddressed or under-addressed psychosocial and financial needs. They are the ones who suffer the most from life disruption. If you think about it, if you’re an 8-year-old, you’re not going to miss in-person school, but we’re going to help you keep up with it. If you’re in your 50s or 60s or older, hopefully, you’re more settled in your career. However, people between 15 and 39 are very often in the peak of their education, developing relationships, dating, and if they are in a relationship, they may be starting a family or have young children.

This is when a cancer diagnosis is particularly disruptive, psychosocially, and financially. What we are doing here is working with our colleagues in adult oncology to think about this group between 15 and 39. Some of those patients will be treated in pediatric oncology. A lot of them will be treated in adult oncology. Our first step is to hire a nurse navigator to work with families to assess their needs and try to provide them with resources, help them with finding and accessing clinical trials, and thinking about them as a separate group.

They’re not just children and they’re not just adults, but they’re in this special group. We’re among many programs in America that are looking at this AYA Oncology Group separately. We’re excited to be partnering with our adult oncology colleagues.

I’ve been in this field for about 30 years and it’s amazing to me the kind of progress I’ve seen. I’m involved in training future pediatric oncologists, and I think that they’re just going see things get better. It’s exciting. I appreciate anything that anyone can do to let people know what we’re doing.