The Definition of Pediatric Cancer is Killing Our Children

“Defining it as “rare” disadvantages the pediatric cancer community”

June enduring toxic treatment — photo by author

The majority of pediatric cancer research and discussion revolves around finding a cure and developing less toxic forms of treatment. There is one additional, extremely important piece, however, so often omitted.

My daughter June passed away from neuroblastoma when she was eighteen months old, nearly three years ago. A cure no longer serves her. I am no longer praying for there to be a less toxic form of treatment, or to lessen the devastating effects of what she would have endured.

Instead of asking questions such as “How are we going to beat this?”, I am left with, “How did June’s cancer form in the first place?” and “Why did this happen?”. The most important question for me today is, how do we prevent childhood cancer? A topic there appears to be little discussion about.

There is a common thread as to why we do not know what causes pediatric cancer, why we haven’t found a cure, and why we don’t have less toxic treatment available for our children. The underlying reason is because pediatric cancer is largely underfunded, compared to adult cancers.

At the root of why it is so underfunded, there is one single line that stands out to me most. It’s familiar because I have heard it repeated many times by nurses, doctors, and healthcare workers. When replying to my burning questions, they would often say, “It’s so rare, so we don’t know”. I can’t be the only parent in the pediatric cancer community that has heard the excuse, “Pediatric cancer is rare,” when searching for answers.

This cringeworthy sentence is exactly why pediatric cancer goes underfunded.

Recently, on February 28th, the world acknowledged “rare disease day”. As I scrolled through endless photos of children dying of cancer, the captions and hashtags #rarediseaseday felt wrong, and didn’t align with the pediatric cancer community that I know so well. There is something broken about a system that continues to allow pediatric cancer to be labeled as a rare disease.

According to the National Institute of Health (NIH), the term “rare disease”related to pediatric cancer, provides unique challenges regarding difficulties of early and accurate diagnosis, access to therapies, visibility in systems, and awareness in the general population. This single, antiquated definition is hurting our children.

At the end of the day, we all want answers for our children. To find the answers we deserve, we must increase funding for pediatric cancer. In order to do that, there is one logical solution. We must redefine pediatric cancer and remove it from the “rare disease” list.

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Every 30 minutes, a child in the United States is diagnosed with cancer. Daily, there are 47 children diagnosed in the US. That is one child and family told every three minutes their child has cancer. Yearly, there are nearly 15,000 children diagnosed with cancer in the US.

Alex’s Lemonade Stand Foundation (ALSF), a prominent figure in the pediatric cancer world, reports that there are 1,800 deaths by cancer for children in the US each year.

In 2022, my June was one of those children who lost her life.

Alex’s Lemonade Stand Infographic 2025 (used with permission)

Worldwide, every year, there are more than 400,000 children diagnosed with cancer. To give you an idea, that is the equivalent to the entire country of Iceland or the Bahamas.

It is the equivalent to the city of New Orleans. Fewer people live in Tampa than children are diagnosed with cancer each year. I am from Maine, so to put it in perspective for my Mainers, multiply the Portland, Maine population by a little over five-and-a-half and that’s how many children, worldwide, each year, are diagnosed with cancer.

Two million children, every five years, are diagnosed in the world.

What do these numbers mean? Personally, I hate reading statistics on childhood cancer. While gut wrenching for me, because June became a statistic the moment she was diagnosed, numbers don’t correlate to feelings or emotions which evoke empathy or understanding. Quite the opposite. Pediatric cancer statistics are wasted on society, who reads them, clicks out, and begins making dinner.

We must utilize statistics and blend them with our voices and our stories of our children to ensure the world sees what we do. So they no longer turn a blind eye.

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It is so easy to ignore our children who are hidden in hospitals or tucked away in their beds at home, too weak to stand, at the end of the hallway in the little rooms of their houses, on a dead end street. The only people who notice they are sick are the neighbors who note their absence in the yard.

They notice the hair loss as the mother carries the child, wrapped in blankets, from the front door to the car for another trip to the hospital. Or worse, in the ambulance that pulls into the driveway, lights flashing, sirens blaring. The neighbor hurriedly runs back into the safety of their home, acting as if pediatric cancer is contagious. Then, they watch from the kitchen window as the struggling family tries to assimilate in a society that marginalizes it. A society that deems it acceptable to call it “rare.”

Life continues as it always had for everyone else, while parents cry in basements and bathrooms after their child has long gone to bed, so not to upset the child or give them cause for more concern. They are already burdened with so much.

The parent is the same uncertain person you are. The parent never imagined her child would get sick. Then one day, life was flipped on its head. Only the day before, that mom was no different than you. It hurts me to ask this of you, but imagine if it was your child, your life, your dead end street where neighbors noticed your child no longer came out to play. What would you do? What does that feel like to imagine?

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In the United States, cancer is the leading cause of disease-related death in children. Childhood cancer rates have increased by 24% over the last 40 years.

Childhood cancer isn’t going away.

In the last ten years, 150,000 children were diagnosed with cancer in the US.

One child out of every 285 children will be diagnosed before they turn 21.

I think you’re getting the point.

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So, where are the federal funds that do exist for pediatric cancer going?

The Cancer Moonshot Initiative (CMI) is federally funded and invests in both pediatric cancer and adult cancers. What is interesting is that for adults, the CMI focuses on research and programs to improve cancer treatments, improve the lives of those diagnosed, and programs in prevention. Oddly, there’s nothing mentioned about prevention in the CMI children’s section. For children, the CMI funds research and programs that focus only on treatments and outcomes. There is zero mention of prevention.

Side note: having no prevention for pediatric cancer puts parents, doctors, and healthcare workers in a complete scramble when a child is diagnosed.

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Why are we not ticking every box we can for the pediatric cancer community in the same way we do for adult cancers?

When I visit cancer.gov, searching for prevention, it states that environmental causes of childhood cancer have been particularly challenging to identify because cancer in children is “rare.”

The colossal excuse reappears.

Cancer.gov states that it’s difficult to determine what children were exposed to early in their development.

How are we going to change this?

Why is it difficult to determine? We built a nuclear bomb. We send people into space nearly every day. Are you telling me you cannot spend a bit more effort in identifying the various factors that might have caused childhood cancer here on the ground? Likely, there are many willing parents who would partake in surveys and questionnaires regarding lifestyle habits and family history. There has to be a way to narrow it down. If you can’t already tell, I’m one bereaved parent chomping at the bit to offer my information.

We do not need a clinical trial to determine why our children get cancer. It’s not that complex. We need healthcare surveys. We need parents. Right now, hundreds of thousands of parents who have had children with pediatric cancer exist in the US, spanning generations.

Why aren’t we surveying them?

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I must argue, for the sake of our dying children, that pediatric cancer no longer be considered a “rare disease.” Perhaps, you think this is a semantics issue, although hear me out.

In the US a “rare disease” is defined by the NIH as “one that affects fewer than 200,000 people at any given time”.

In 2020, at one given time, there were nearly 500,000 children living with pediatric cancer in the US who had been diagnosed before the age of 20.

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Roughly 4% of federal funding goes toward all pediatric cancer research. It is not broken down into individual cancers like that with adults. Adult cancers receive more funding because only a quarter of adult cancers are considered rare. Adult rare cancers receive more funding than pediatric cancer, despite being considered rare.

Let’s me say that again: adult rare cancers receive more funding than pediatric cancer does as a whole.

Where is the equality and justice in this situation?

Private philanthropies, which feel hopeful, fund at least half of all of childhood cancer research, but fall short in comparison to those which raise money for adult cancers.

Again, we are at a loss.

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Rare cancers affect fewer than 6 out of 100,000 adults each year in the US. Pediatric cancer affects 17.14 out of 100,000 children ages younger than 15 years. Pediatric cancer is more prevalent than adult rare cancers, however it receives far less funding.

The above statistic omit “adolescent cancers” ages 15–19 which would increase the pediatric cancer statistic. For some reason, pediatric and adolescent cancers are divided despite the Merriam-Webster definition of “pediatrics” being “a branch of medicine dealing with the development, care, and diseases of infants, children, and adolescents.”

Where is the uniformity when discussing pediatric cancer?

Meanwhile, due to lack of funding, children are treated with drugs that are meant to kill adult cancers. A child’s cancer varies genetically from adult cancer, and therefore, should be treated very differently.

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The definition of “rare” is an excuse that is killing our children. It is no secret that pharmaceutical companies are less likely to invest in pediatric cancer research because of the simple fact that the adult cancer market is larger and more profitable. Pharmaceutical companies want a return on their investment.

The National Cancer Institute (NCI) states that because childhood cancers are so “rare” it is difficult to find children who will partake in clinical trials. Clinical trials need a certain number of patients to determine whether a drug will be effective in treating a specific cancer. For example, because of the small cohorts of people, there might not be between 100 and 300 children with neuroblastoma who will partake in a study, therefore not making the study worthwhile.

Between 700 and 800 children are diagnosed with neuroblastoma each year in the US. Feels like an ample amount of children to create a cohort. Various factors play into the clinical trial, however like age of the child at diagnosis, a child passing away from the toxic treatment options during treatment, or because treatment failed them and the cancer relapsed. However, if this country were able to gather immediate information regarding diagnosis and created a campaign for people to enter clinical trials with their children, what would that look like?

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In tandem with redefining pediatric cancer and removing it from the rare disease list, I must call on the greater world to help us heal our children. I must begin the argument for advocating for supporting prevention, research, and treatments for pediatric cancer on the world stage.

It is time researchers, doctors, hospitals, and organizations all over the world, come together for the sake of our children. This isn’t an individual’s issue. It is a world problem.

What might clinical trials on the world stage look like for pediatric cancer? It is known that multinational trials implemented across multiple countries are especially valuable for “rare diseases.” Cohorts do not have to be large. They can consist of a few hundred children. When there are over 400,000 newly diagnosed children to choose from, this shouldn’t be an issue.

Clinical trials are the biggest contributor to making progress within a disease. They are entirely necessary to keep our children alive.

What is the excuse for not doing this?

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It leaves me begging the question, how do we sleep at night knowing we are losing 22,500,000 years of life every year in the US to childhood cancer when there is more that can be done?

When we lose 1,500 children per year to the disease who could have lived at least another 60 years die, then we have lost 22,500,000 years of our future as a country.

Shame on our country.

Shame on our world.

Personally, June has lost 525,600 hours of her precious life. I will never know how she would have used it. Who she would have become. What contributions she would have made to the world.

Neither will you.

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The other doomsday problem related to pediatric cancer being “rare” and keeping it in the dark, is that it is more cost-effective to prevent than to treat. Prevention is free. Healthy children cost the healthcare system nothing. Cost-effective does not equate to lucrative for anyone involved in healthcare.

The United States deems pediatric cancer as rare because it is too expensive to invest in small clinical trials and the financial reward healthcare companies receive for a sick child greatly outweigh the benefit of properly treating them or by preventing cancer occurrence. If it is more lucrative to keep our children sick, what powerful, important leaders will ever use funds to determine disease prevention?

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June is gone. There is no way for me to time travel and change the events that unfolded. I don’t need a warm body to blame. I am not looking for a place to put rage. I don’t want revenge, either. I just want an answer. June is gone, but I want better and more varied treatment options for today’s children. I want the world to focus on pediatric cancer prevention. I want the country to stop comparing pediatric cancer to adult cancer and calling it “rare.”

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June came to this earth for such a short time, although her impression will last an eternity. Because she was so vulnerable in her death and wasn’t protected by our culture, our country or the world, it is my right, my position, my obligation as her mother and advocate to continue to question everything about her experience on earth.

June graced my life and I owe her nothing less but to find the reason why she became sick. We need to start to discuss how we can prevent pediatric cancer.

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The way we speak, the words we use, have dire consequences. Words are preventing our children from living. They have the power to reshape our future, and as we have learned here, they excuse our jaded past.

Time’s up. Let’s acknowledge pediatric cancer at face value and not reduce it to fit into the tiny, convenient definition of “rare”.