Funding for pediatric cancer research in the U.S. is limited even though childhood cancers are serious. Less than 4% of all federal cancer research money goes to pediatric cancers. This small amount shows how hard it is to study rare cancers in children. Pediatric oncology research needs special equipment, trained staff, and facilities made for children. These needs make it more costly and harder to do research than adult cancer studies.
Recently, the National Institutes of Health (NIH) suggested a new rule to limit the reimbursement rate for indirect costs on research grants to 15%. This is much less than the usual 27-28%, and sometimes up to 70%, that is currently paid. Indirect costs cover important things like lab space, equipment, administration, and staff support needed for research. Cutting reimbursements to 15% might save the federal government billions yearly. But it risks pediatric cancer research centers losing their ability to work well. Because of this, 22 states, big medical schools, hospitals, and Massachusetts have sued to stop this rule. A federal judge also made a temporary order to block it across the country.
The Pediatric Cancer Research Foundation (PCRF), a nonprofit in this area, says this funding cut could harm research and treatments. Danielle Fragalla, PCRF’s CEO, says less federal support makes the foundation look for private donations and new partnerships to cover the gap. PCRF is running a $25 million campaign focused on long-term pledges and expanding donors to keep research and family support going.
Foundations fill important gaps where federal money is not enough. They give support for research, clinical trials, patient and family help, survivorship programs, and advocacy. Many focus on rare pediatric cancers that get less funding. For example:
Patient advocacy groups connected to these foundations also help families find expert medical centers and support groups. The MyPART Network, supported by the National Cancer Institute (NCI), connects patients, doctors, and researchers to improve access to treatment and research for rare pediatric cancers.
Foundations also work with healthcare providers to create treatment plans, education programs, and research studies. This teamwork allows better care coordination, more people joining clinical trials, and stronger family-centered care.
At the federal level, the Childhood Cancer STAR (Survivorship, Treatment, Access, Research) Act became law in 2018 and will stay in effect through 2028. This law supports pediatric and adolescent/young adult cancer research. It improves cancer tracking and helps survivors and their families.
The STAR Act allows more collection and storage of biospecimens, which is needed for rare cancer research. Groups like the Children’s Oncology Group (COG) and the Childhood Cancer Data Initiative (CCDI) use this funding to collect tumor and blood samples. They focus on cancers that are hard to treat. This helps with molecular studies and research to find why some tumors resist treatments.
The STAR Act also supports research on long-term effects of treatment, health differences, care obstacles, and finding better interventions. Researchers are working on mobile health tools and AI-based prediction methods to improve survivors’ quality of life.
The NCI makes sure pediatric cancer experts are on advisory boards, study groups, and research teams. This helps match research goals with actual clinical needs.
Artificial intelligence and workflow automation offer useful tools to improve pediatric cancer research, patient care, and hospital work.
Data Management and Research Acceleration: AI can study large biomedical data sets like genetic information and tumor profiles, speeding up new treatment discoveries. AI helps researchers find treatment resistance patterns and patient outcomes. This is important for rare pediatric cancers with small data samples.
Patient Care Coordination: Automated phone systems and AI communication platforms help administrators and IT managers handle appointments, follow-ups, and information sharing easier. Companies like Simbo AI provide AI-powered phone services that reduce work for clinical staff. These tools help families quickly reach care teams, schedule visits, or get trial and support information.
Survivorship Care Management: AI health tools support long-term care. Mobile apps track survivors’ symptoms, medicine use, and lifestyle. Automated systems help providers set follow-up visits, manage complex care, and ensure survivors follow care plans required by laws like the STAR Act.
Clinical Trial Support: Workflow automation makes recruiting, screening, and enrolling children in cancer trials smoother. By matching patient data with trial rules, AI helps staff find candidates fast and reduce mistakes. This helps new treatments reach patients quicker.
Research Grant Management: Automation also helps hospitals and research centers handle complicated funding tasks. It tracks costs, grant applications, and compliance documents accurately. This is important with changes in NIH reimbursement rules and helps keep pediatric cancer research running.
Healthcare administrators and owners in the U.S. can help families by working with pediatric cancer foundations and linking their services to clinical workflows. For example, connecting electronic health records (EHRs) with nonprofit databases can find patients who qualify for support and clinical trials automatically.
Education and communication tools give families up-to-date information on cancer treatments, research, counseling, and financial help. Workflows that include these resources make patient and family experiences smoother.
Also, using automated alerts to watch follow-up care can lower missed appointments and avoid long-term health problems for childhood cancer survivors.
Federal funding cuts bring uncertainty, but healthcare leaders can help their organizations keep advancing pediatric cancer care by working with foundations and using technology.
Pediatric cancer research in the U.S. depends on federal funding, nonprofit foundations, and healthcare providers working together. Foundations play an important role in funding research, helping families, and raising awareness, especially when federal funding faces cuts from new NIH cost rules. Laws like the Childhood Cancer STAR Act provide useful resources and support research and survivorship programs.
Healthcare groups, including administrators, owners, and IT staff, can help by using AI and automation to improve care and research management. Working with pediatric cancer foundations and patient groups boosts help for families and keeps progress going in treatment development.
Healthcare systems that combine fundraising, technology, and coordinated care workflows will be better able to support children with cancer and their families, even with tight budgets.
Dr. Richard Stefanacci is currently serving as the Chief Medical Officer (CMO) for TauRx Pharmaceuticals, where he is focused on bringing an innovative oral tau treatment for Alzheimer’s disease to patients.
His primary interests include innovative care delivery systems, dementia care, fall injury prevention in older adults, post-acute and long-term care, and medication access and management.
Dr. Stefanacci holds a Doctor of Osteopathy (DO) and a Master of Geriatric Health (MGH) from A.T. Stille University of Health Sciences and an MBA from Keller Graduate School of Management.
He has focused on developing and implementing care delivery systems that improve health outcomes, especially for frail older adults and children with cancer.
The Program of All-Inclusive Care for the Elderly (PACE) is a program that provides comprehensive care for elderly individuals, combining medical, social, and supportive services.
Dr. Stefanacci has authored over 500 publications related to geriatric care and health policy, demonstrating his extensive expertise.
He has been honored with the Humanism in Aging Leadership Award from the University of New England’s Department of Geriatrics and is a fellow of the American Geriatric Society.
He served as a Health Policy Scholar for the Centers for Medicare and Medicaid Services (CMS) and has assumed roles in various health policy-focused institutions.
Dr. Stefanacci integrates innovative technologies like the TangoBelt, a medical device aimed at preventing hip fractures in older adults, to enhance patient safety and care.
He founded the Go4theGoal Foundation, which raises funds to assist children affected by cancer and to support cutting-edge cancer research across the nation.
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