If you spend any time in the pediatric cancer advocacy world, you'll see one number over and over. Eight percent.

That's the widely-cited figure for how much of the federal cancer research budget goes to pediatric cancer. Foundations have been organizing around it for over a decade.

This post is an attempt to explain what the number is, where it comes from, why it matters, and what would need to change for the number to move.

Where the 8% figure comes from

The National Cancer Institute (NCI), part of the National Institutes of Health, is the primary federal agency funding cancer research in the United States. NCI's total budget for fiscal year 2024 was approximately $7.2 billion.

NCI does not have a single line item labeled 'pediatric cancer research' that is easy to isolate. Pediatric cancer research is funded across multiple NCI divisions and programs. Advocacy groups have long estimated that the pediatric-specific portion of NCI's spending is roughly 8 percent of the total cancer research budget, or about $576 million per year for all pediatric cancers combined.

The advocacy community has been calling for that number to move for years.

Why the funding gap matters

Pediatric cancer is not the largest cancer category by patient volume. That is true. Adult cancers, by sheer numbers, affect more people.

But pediatric cancer has three specific characteristics that make research funding uniquely important for this population.

1. The drug pipeline is dry

Most children with cancer are treated with drugs originally developed for adult cancers, adapted for pediatric use. Very few drugs are developed with pediatric cancer as the primary target. This is partly because pediatric cancers are biologically different from adult cancers, and partly because the commercial incentive structure has historically favored adult indications with larger patient populations.

The result is that the backbone chemotherapy drugs for many pediatric cancers were developed decades ago. Vincristine (1963). Methotrexate (developed from Sidney Farber's 1948 work). 6-mercaptopurine (1953). Doxorubicin (1974). These are the drugs children are still being given today.

2. Late effects are lifelong

An adult cancer patient treated at 55 who lives 30 more years is a survival success. An 8-year-old treated with the same drug who lives 70 more years is also a survival success, but that 70 years includes decades of exposure to the long-term effects of that treatment.

60 to 90 percent of childhood cancer survivors develop at least one adverse health condition traceable to their treatment. By ages 40-49, 88 percent of childhood cancer survivors have at least one chronic health condition.

This is why research investment in gentler, more targeted pediatric treatments has a compounded return that adult cancer research does not have in the same way.

3. Cancer is the leading disease-related cause of death in U.S. children

Even with modern survival rates, cancer is still the leading disease-related cause of death for children in the United States, past infancy. This is a scale of harm that federal research spending has not matched.

What has moved and what has not

What has moved

The RACE for Children Act, passed as part of the FDA Reauthorization Act of 2017, requires certain adult cancer drug developers to plan pediatric studies when the molecular target is relevant to a pediatric cancer. This law took effect for new drug applications submitted after August 18, 2020.

The Kymriah CAR-T therapy, approved in 2017, is a landmark example of what dedicated pediatric research produces. Kymriah was the first FDA-approved gene therapy in the U.S. and produced complete remission rates of around 83 percent in children and young adults with relapsed or refractory B-cell acute lymphoblastic leukemia, a group of patients who had previously had very few options.

The Childhood Cancer STAR Act, passed in 2018, expanded pediatric cancer research infrastructure and survivorship support at the federal level.

These are real wins. Advocacy moved them.

What has not moved

The overall NCI funding percentage has stayed roughly the same. Around 8 percent, give or take, for years. Despite consistent advocacy pressure. Despite documented need. Despite the pediatric cancer community showing up every September and every advocacy week and every congressional hearing.

That is what CCAM 2026 is trying to change.

What increased funding could do

If NCI's pediatric cancer research portfolio doubled from 8 percent to 8 percent, or even to 10 percent, here's what the field could plausibly accelerate:

Development of pediatric-specific targeted therapies designed for pediatric cancer biology from the start, not adapted from adult trials
Expanded immunotherapy research, following the Kymriah proof of concept
Precision medicine research for the rare pediatric cancers that currently attract very little industry investment
Longer-term late-effects research, giving survivors better lives 20 and 30 years after treatment
Clinical trial infrastructure for pediatric cancers, which is currently under-resourced compared to adult trials
Support for the biobanks, registries, and data infrastructure that pediatric cancer research needs to move faster

None of this is speculative. Every one of these is a documented research gap that pediatric oncology leaders have been asking to fund for years.

What you can do about the 8% number this month

1. Contact your congressional representatives

Ask them to support increased federal funding for pediatric cancer research through NCI, and to support full implementation of the RACE for Children Act. Template letter here on our blog: [link to Sep 6 post].

2. Give directly to pediatric cancer research foundations

The organizations funding pediatric cancer research directly include St. Baldrick's Foundation, Alex's Lemonade Stand Foundation, the National Pediatric Cancer Foundation, CureSearch, and CureChildhoodCancer. Every dollar to these organizations goes to work federal funding is not covering.

3. Share this number with people who don't know it

Most people do not know the 8 percent figure. When you tell them, they are usually surprised. Awareness moves policy. Policy moves budgets. This is how the number changes.

4. Support advocacy organizations doing federal work

The Alliance for Childhood Cancer, the American Childhood Cancer Organization, and the Children's Cancer Cause all do year-round federal advocacy. They organize congressional visits, testify at hearings, and press for policy change.

A closing note

The 8% number is not a tragedy. It's a policy choice. Policy choices can be changed.

September is one of the highest-leverage months of the year to press on this. Congressional offices are back from summer recess. Budget conversations are active. The pediatric cancer community is more visible than at any other time of year.

Whatever version of advocacy fits your life, this is a good month to do it.

Dina
Mom of Max | Founder, Maxwell’s Toy Shoppe
Childhood Cancer Advocate 💛

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