Childhood Cancer Awareness Month Spotlights Barriers That Persist in Care

The conclusion of Childhood Cancer Awareness Month, held annually each September, sees the oncology subspecialty in a different position than this time last year. The funding cuts brought on by the Trump administration have put research into various chronic diseases, including cancer, on the backburner indefinitely,¹ making the future of children who get the devastating diagnosis unclear and stalling the significant progress made in childhood cancer outcomes.

Childhood Cancer Has Heavy Toll on Long-Term Health

Although childhood cancer prognosis has improved significantly in the past few decades, with 80% of those with childhood cancer likely to live at least 5 years after diagnosis,² there are aspects of their cancer care that can be difficult to navigate, especially when it comes to long-term health effects after treatment.

“Cancer therapy is still not necessarily kind and gentle,” said Debra Friedman, MD, MS, director of the Division of Pediatric Hematology/Oncology at Monroe Carell Jr. Children's Hospital at Vanderbilt. “We don’t have a targeted option for every cancer, so, unfortunately, there is a risk for damage to normal tissues and normal organs during cancer therapy.”

Peter Cole, MD, chief of the Division of Pediatric Hematology/Oncology at the Rutgers Cancer Institute and RWJBarnabas Health, noted that the cure for childhood cancer often causes permanent organ dysfunction, such as heart problems, endocrine dysfunction, and increased risk of a second cancer. Brain fog, he said, is an area of research that’s still being evaluated.

“When they’re older and among survivors, sometimes that feeling [of brain fog] just doesn’t go away, and some survivors will be less likely to graduate from high school or college than their siblings because of permanent damage to the brain,” said Cole.

Psychosocial outcomes are a notable effect of the treatment as well, said Friedman, as the treatment and the experience of having a life-threatening illness can be a traumatic experience. This can also affect families of the child, as they also experience mental health issues from watching their loved one experience the ordeal.

“Patients need to kind of return to a new normal, and that sometimes can be challenging depending on what they went through, what they walked into their cancer diagnosis with as a human being,” she said. “Their age and their support system, that can differ significantly from patient to patient but it needs to be acknowledged and thought about.”

Although these are significant challenges in the space, interventions have been helpful in addressing both the physical and mental toll of treatment. Cole noted that working alongside specialists can help to address potential organ dysfunction in children, such as in fertility long-term. Individual education programs can also be developed for a student with cognitive disabilities after their treatment in collaboration with both the doctor and their teachers to make sure that the child isn’t left behind.

Friedman pointed out the importance of having doctors ask how the patient and their parents are really feeling and providing applicable resources based on their needs.

“These resources may be at the same center where the child was treated or where a survivorship program is. It may be in the community, and it may be a combination of both. But we really need to help families find the best services for them. And sometimes we need to educate our community partners who may not have a lot of experience working with childhood cancer survivors and their families,” she said.

Cost of Childhood Cancer Extends Past the Financial Burden

Long-term health outcomes are a notable concern for families experiencing childhood cancer. However, said Friedman and Cole, the cost of care and the barriers to care that stem from cost can have just as much of an effect on the child as the treatment itself.

“Cost of care for children isn’t limited to the charges, the bills that they receive from the hospital,” said Cole. “Cancer for children really affects the whole family.”

Friedman noted that cancer treatments can be expensive both because some therapeutics are so new and also because of how rarely the drug is used, leading to scarcity due to few manufacturers making the drug. Although Cole and Friedman noted that both of their cancer centers offer charitable care, this is not a universal offering across the US.

Children also need to be brought into the hospital for their treatments, which can provide another challenge, said Friedman. They may need someone to both bring them in for treatment and to stay at home with them afterward, “which means that a parent who formerly worked may have to give up their job to take care of their child. That affects, obviously, the income of the family, but it also may affect the level of insurance coverage for those patients,” she noted.

Finances can also come into play in older children, such as adolescents and young adults, as these children are least likely to get access to care at an academic medical center,³ said Cole. “There are many barriers to care that have to do with the finances of losing access to your parent’s insurance when you’re turning 26 but also the distance to the hospital,” he said.

These barriers can make treating children and adolescents with cancer consistently a challenge. However, the biggest challenge in cancer care may be in a combination of cost and care itself, with decisions made recently that can affect both.

Cuts to Research in Childhood Cancer Arguably the Biggest Challenge in Childhood Cancer

Both Cole and Friedman emphasized that the cuts to research funding in children’s cancer specifically will have devastating effects.

“We’ve made tremendous advances over the years in childhood cancer. We cure about 85% of children with cancer, and that cure rate has come 100% from us being able to conduct research and for us to provide the very, very best multidisciplinary, multispecialty care, clinical care for these patients,” said Friedman.

Although the Senate rejected the Trump administration’s proposed 40% cut to the National Institutes of Health in July,⁴ many researchers are still feeling the brunt of the administration, as many employees were either laid off or left due to the upheaval.⁵ The National Cancer Institute has canceled contracts due to mandates from HHS and the Department of Government Efficiency. Nearly 2500 grants from the NIH were canceled in April, with these slashed cuts including research into brain cancer.¹

Friedman noted that even cancers that have high cure rates need that research to push the efficacy of treatment even further and save 100% of the patients who have cancer rather than 98%. Most research, she said, is funded by the federal government and philanthropy because childhood cancer is classified as a rare disease and is not profitable for pharmaceuticals.

“I can tell you that we’re generally very optimistic these days; most children with cancer can be cured. But the only reason we are so optimistic is because of all the research that’s come before us,” Cole emphasized. “Today though, all of that research funding is at risk and is being cut recklessly and it’s already having an impact…our research is really our only hope for improving outcomes for anybody with cancer, but children with cancer in particular.”

With Childhood Cancer Awareness Month drawing to a close, the challenges in taking care of children diagnosed with cancer should be spotlighted to emphasize the need for suitable means of addressing these challenges. Making sure that researchers have the money to provide better means of curing patients can have a downstream effect on easing the challenges of treating childhood cancer, making more means of treatment accessible, and coming up with new ways to save as many children as possible.

References

1. Hwang I, Huang J, Anthes E, Migliozzi B, Mueller B. The disappear funds for global health, vaccine research, chronic diseases. The New York Times. June 4, 2025. Accessed September 19, 2025. https://www.nytimes.com/interactive/2025/06/04/health/trump-cuts-nih-grants-research.html

2. US childhood cancer statistics. American Childhood Cancer Organization. Accessed September 19, 2025. https://www.acco.org/us-childhood-cancer-statistics/

3. Solovey MG. Adolescents, young adults less likely to receive specialized cancer center care. Penn State University. May 22, 2020. Accessed September 19, 2025. https://www.psu.edu/news/research/story/adolescents-young-adults-less-likely-receive-specialized-cancer-center-care

4. Wosen J, Russo M. Senate committee endorses NIH budget increase, rebuking Trump administration’s proposed 40% cut. STAT. July 31, 2025. Accessed September 19, 2025. https://www.statnews.com/2025/07/31/nih-budget-senate-committee-replaces-trump-cuts-with-400-million-increase/

5. Pradhan R, Allen A. World’s premier cancer institute faces crippling cuts and chaos. KFF Health News. Updated July 14, 2025. Accessed September 19, 2025. https://kffhealthnews.org/news/article/national-cancer-institute-nih-cuts-chaos-scientific-biomedical-research/