Is Childhood Cancer Rare?

There are many different types of pediatric cancer with some of them being rare. When a child gets diagnosed with a rare type of cancer, there may arise a range of difficulties in receiving a diagnosis or care because of the number of types of cancers that need to be ruled out and the time it takes to start the right treatment plan. Among all the ‘rare’ and ‘common’ types of cancers children develop, is childhood cancer rare relative to the total number of people that receive a cancer diagnosis?

According to the U.S. Rare Diseases Act passed in 2002, all childhood cancers are considered ‘rare’ because of the amount of the total population it affects. Despite that, cancer is still the top cause for childhood deaths under accidents. For every type of childhood cancer that occurs, there are hundreds of subtypes or rare types that also occur. 

This means that it is very difficult to acquire funding for research towards finding effective and specified treatment methods for specific types of cancer. With childhood cancer seen as ‘rare,’ the U.S. government only provides 8% of total cancer funding to support the wide range of childhood cancers.

How rare is childhood cancer in the scheme of all cancers?

It was estimated last year that over 15,000 children between the ages of 0-19 would receive a cancer diagnosis in the United States. In 2018, just over 48,000 children that survived cancer were still alive in the U.S. This number will continue to increase alongside the steady rise in the number of children that receive a cancer diagnosis. With additional funding and research efforts, we can improve this number even more.

Survival rates for certain types of cancers have increased since the 1970’s with 85% of children of children surviving more than 5 years compared to only 58% surviving during the 70’s. Childhood cancer diagnoses are different from types of adult cancers with genetic factors only contributing to a very small number of cases. Childhood cancers are also less likely to originate from lifestyle and environmental factors compared to many types of adult cancers. 

According to cancer.gov, for each age range, there are:

“17.8 cancer diagnoses per 100,000 children ages younger than 15 years
77.4 cancer diagnoses per 100,000 adolescents and young adults ages 15 to 39 years
548.9 cancer diagnoses per 100,000 adults ages 40 to 64 years” (cancer.gov). 

Of those cancer diagnoses, there are hundreds of types of cancer and the timeline of diagnostics to treatment can be slowed down by the process of ruling out the many types of cancer. With funding so low, it can take longer for children to receive the proper diagnosis and care because resources are not always readily available or accessible to the family impacted by childhood cancer. Depending on where the family lives and their economic means, childhood cancer can be more difficult to receive treatment for than many adult cancers.

This highlights the fact that funding for childhood cancer should not be decided on based on how commonly occurring it is but rather the many challenges and roadblocks that families face when their children receive a cancer diagnosis. Of the children that do survive cancer and cancer treatments, 50% of them will have chronic health issues. Many children receive no follow up care because it is not offered or is unaffordable. It is clear that ‘rareness’ does not account for the many ways that funding is desperately needed to make an impact in childhood cancer.

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With childhood cancer rates on the rise, awareness and support is needed more than ever. Despite doctors and hospitals seeing more children for cancer treatment, there are many ways childhood cancer is underfunded. 

Cost of clinical trials

There are two types of costs associated with participating in a clinical trial: costs related to care and costs related to research. In many cases, the main treatment in a clinical trial may be provided for free by the trial sponsor but there are still additional costs required to participate. 

Some of the clinical costs might include standardized treatments, doctor visits, hospital stays, lab tests and diagnostic imaging. Many of these care and research costs may not be covered by the trial or insurance, and families often need to travel or take time off work to be able to participate. Too often, families with lower economic means end up with the highest travel related costs. 

4% of govt funding goes to childhood cancer

In 2021, it was estimated that there would be 10,500 new cancer diagnoses among children in the United States. Despite that, only 1-3% of all cancer diagnoses are children. Of the billions of dollars reserved for cancer research by the government, only 4% of that will go to the care, treatment, support and research for the growing number of types of childhood cancers. 

The most common types of childhood cancers include brain cancer, leukemia, cancers of the central nervous system & lymphomas. These four types make up the majority of cases seen in children with improving rates of survival among some of them. The biggest challenges occur when children develop rare forms of cancer that have no specified treatment protocols and new research methods remain slow to develop.

Too rare for research?

There are many different subtypes of pediatric cancer with some of them being very rare. When a child gets diagnosed with a rare type of cancer, there may arise a range of difficulties in receiving a diagnosis or care. According to the U.S. Rare Diseases Act passed in 2002, all childhood cancers are considered ‘rare’ because of the amount of the total population it affects. Despite that, cancer is still the top cause for childhood deaths. For every type of childhood cancer that occurs, there are hundreds of subtypes that also occur. This means that it is very difficult to acquire funding for research towards finding effective and specified treatment methods.

Standardized care

When looking into treatment options for a child with cancer, the options may be limited. Since children respond differently to cancer treatments than adults do, the protocols may not be specific enough to that child’s type of cancer and is usually based on a standardized method of care. With many types of rare childhood cancers and a lack of funding for research, there are few options for families to choose from. Most options available today were approved over 30 years ago, many in the 60’s, 70’s and early 80’s. 

Unless a clinical trial is available, attainable and promising, there are only standard levels of care that many children will receive. No form of childhood cancer should be too rare to receive funding for research and better care resources.

Fundraising challenges

With only 4% of government funding for cancer research going to pediatric cancer, there are big strains on fundraising efforts among health organizations, nonprofits and state and local governments. Most health organizations do not have additional funding set aside specifically for cancer research. Incoming donations are inconsistent and mostly reliant on social & local support. These organizations experience extreme pressure on where to apply their donation funds and how to allocate it for all the ways their care and research departments need support. 

Nonprofits rely heavily on direct charitable donation from their communities, which can pose a strain on their goals to consistently support families and research efforts. It’s important that nonprofits are able to diversify their funding sources. While the small amount of government funding to cancer research has led to the development of new drugs, it’s harder to track how publicly funded research has made an impact on cancer research developments. With so little government funding going towards this important cause, it proves how much can still be done when people regularly support childhood cancer nonprofits.

What about the survivors?

Once a child survives cancer, their lives may not return to normal right away, or ever. Long term health risks and illnesses may arise over their lifetime, sometimes at young ages in adulthood. Many survivors will develop chronic health problems, infertility, or other types of cancer later in life. 

While disengaging from care after survivorship can be emotionally and psychologically beneficial, there are too many long term risks the survivor might face. Aftercare an important element that should be included in all cancer treatment protocols. Depending on many factors, some patients may require more aftercare than others. 

When we consider that many patients are not given follow up care recommendations, we also need to consider that this is not accessible to every family where survivorship care is very important to the health of the child. Despite the long term benefits and importance of monitoring a child’s health in survivorship, only 68% of patients follow up with any form of long term care. The cost effectiveness of survivorship care is still under-established and underfunded. 

We Can Make an Impact on the Many Ways Childhood Cancer is Underfunded

At Princess Nora’s Warrior Foundation, we want to educate on the ways childhood cancer is underfunded and guide you through the process of supporting families in need. When you make a donation, you can leave a note indicating what you would like your gift to support. Please join our newsletter and continue reading for more information about childhood cancer and how we make an impact with our donations.