The National Cancer Institute (NCI) estimates that in 2021 in the United States, there were around 15,590 children and adolescents from the age of 0 to the age of 19 diagnosed with cancer. Out of these, an estimated 1,780 died of this disease.
Once a child is past infancy, cancer represents the number one cause of death by disease in the U.S. The National Pediatric Cancer Foundation declares that approximately 1 in 285 children will be diagnosed with cancer before their 20th birthday.
And yet, cancer research funding towards childhood cancer is severely lacking. Only about 4% of all federal funding for cancer research is spent on projects involving children’s cancers.
This blog post aims to explain why childhood cancer research is chronically underfunded and what can be done to improve this situation.
Childhood cancers, a breakdown
Overall, the most commonly diagnosed cancer types between the ages 0 and 19 are:
- Different types of leukemias
- Brain and central nervous system (CNS) tumors
Children ages 0 to 14 are most frequently diagnosed with the following cancers:
- Brain and other CNS tumors
- Kidney tumors
- Malignant bone tumors
Adolescents ages 15 to 19 are most frequently diagnosed with:
- Brain and other CNS tumors
- Thyroid cancer
- Testicular or ovarian cancer
- Germ cell tumors
- Malignant bone tumors
The possible causes of cancer in children and adolescents are similar to those in adults. Cancer occurs due to genetic alterations that cause the cell to divide uncontrollably and invade other tissues.
The main risk factors for cancer in children are:
- exposure to ionizing radiation
- exposure to chemicals or other environmental carcinogens
- parental exposure to carcinogens before conception
- congenital disorders (such as Li-Fraumeni syndrome)
- inherited genetic conditions (such as retinoblastoma)
- and certain autoimmune conditions (such as familial hemophagocytic lymphohistiocytosis).
On the other hand, a few factors may contribute to lower cancer risk in children, such as the mother consuming folate during pregnancy, being breastfed, and being exposed to common childhood infections.
In 1988, Sir Melvyn Greaves, a British cancer biologist, posed a hypothesis that a delayed exposure to childhood infections increased the risk of the child developing acute lymphoblastic leukemia. His belief was that this delay led to an improperly modulated immune system, which in turn would be unable to prevent the proliferation of leukemia cells.
Since then, numerous studies have been published in support of this hypothesis, finding that children who were not exposed to common infections such as influenza and the respiratory syncytial virus (RSV) had a higher risk of developing leukemia.
Since the mid-1970s, the overall outlook for children with cancer has improved significantly.
Today, around 84.7% of children and 85.9% of adolescents with cancer in the United States will live at least five years after their diagnosis. This can be attributed to many factors, including improved diagnostic and therapeutic protocols, earlier detection of cancers, and better supportive care for children undergoing treatment.
At the same time, over 95% of childhood cancer survivors develop at least one chronic health condition and regularly experience issues related to their cancer and treatment. This includes late effects of therapies or tumor recurrence and conditions such as heart disease, second cancers, infertility, learning disabilities, lower respiratory issues associated with radiation therapy for brain tumors, kidney problems after chemotherapy, and so on.
While survival rates for children with cancer may have improved over the last few decades, much more needs to be done in terms of research and funding for childhood cancers.
Childhood cancer funding
Funding sources for childhood cancer are much the same as funding sources for adult cancers – government funding, pharmaceutical industry funding, and charity organizations.
As mentioned above, only 4% of all federal funding for cancer research goes to studies on pediatric cancers.
One of the main reasons why childhood cancer research is chronically underfunded is that collectively, childhood cancers are considered rare (only 1-3% of all cancers diagnosed in the US in a given year). And yet, an alarming statistic is that each day, at least 45 children in the United States are diagnosed with cancer.
In addition, many parents and advocates feel that pediatric cancers are not taken as seriously as adult cancers by the medical community and that this also contributes to the lack of funding for childhood cancer research. Children may be perceived as more resilient, since they typically don’t have as many comorbidities as adults, and so the side effects of treatment (or even the importance of discovering the right treatment) may not be given as much consideration.
The pharmaceutical industry is reluctant to develop drugs for childhood cancers, as the potential market is too small. Pharmaceutical companies want to ensure a return on their investment, and if the average yearly number of new cancer cases in children is around 15,000, the potential market for drugs to treat these cancers is not very large.
There are a few exceptions, of course, with a number of pharmaceutical companies devoting resources to developing new treatments for children with cancer. But, in general, the amount of funding for childhood cancer research from the pharmaceutical industry is much, much lower than for adult cancers.
All of this leaves charity organizations as one of the primary sources of funding for childhood cancer research. And while there are a number of very reputable and effective charities that raise money for this purpose, the total amount of money they raise is nowhere near the amount of money raised for adult cancers.
So, what can be done to improve the situation concerning childhood cancer research funding?
There are a number of potential solutions to the problem of underfunded pediatric oncology research:
- The government could provide more financial incentives for companies and research labs to study and develop treatments for childhood cancers. This would likely involve increasing the percentage of federal funding allocated to pediatric cancer research and/or increasing the overall budget for cancer research.
- More clinical trials for children with cancer are needed. Pharmaceutical companies are reluctant to invest in pediatric cancer drug development unless there is a good chance of recouping their investment, and this largely depends on the success of clinical trials. However, there are not enough clinical trials for children with cancer, and many of those that do exist have very small patient populations. Getting big pharma to invest in childhood cancer trials could involve new legislation and/or incentives. At the same time, making the trial process itself faster and/or less expensive could also help. (Such as expediting FDA reviews for new pediatric drugs, as the Creating Hope Act did in 2020).
- There needs to be more awareness among the general public of the seriousness of childhood cancers and the need for more research funding. Raising awareness can be done through campaigns by cancer charities, social media, and even legislation.
- Better data exchange about childhood cancers is needed. This would involve sharing data between government agencies, the pharmaceutical industry, and cancer researchers to gain a better understanding of the incidence and prevalence of different childhood cancers, as well as the best ways to treat them. One example of such an initiative is the NCI’s Childhood Cancer Data Initiative (CCDI).
In oncology, a person diagnosed with cancer is considered a survivor if they are still alive five years after their diagnosis. While this may be an acceptable definition for adults, five years in a child’s life is a considerable amount of time. Their five years are formative in terms of their physical, emotional, and social development.
We need to find a way to define “survivorship” for children with cancer that considers all of these factors. This would help us better understand the long-term effects of childhood cancer treatment and help us track the success of various treatments.
While cancer in children is rare, childhood cancers are the leading cause of death by disease in children in the United States. Unfortunately, the amount of funding for research into these cancers is much lower than for adult cancers.
Charity organizations do a great job in raising money for childhood cancer research, but much more needs to be done. The government could invest more money into pediatric cancer research, more clinical trials need to be conducted, and there needs to be more awareness among the general public of the seriousness of childhood cancers.
What you can do to help is donate to a reputable cancer charity, share information about childhood cancers on social media, and contact your elected officials to let them know that you support increased funding for pediatric cancer research.
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