The childhood cancer landscape is changing and changing fast. The National Institute of Health (NIH), a lifeline for the childhood cancer community has depended upon since 1930, is facing serious cutbacks.

The NIH 2025 budget is $54 billion and employs over 50,000. There are 21 health related institutions within the NIH of which the National Cancer Institute (NCI) is one. The NCI 2025 budget is $7.2 billion and employs 3,500. At risk are the following:

· Research Grants………..$3.2 billion

· Other Grants…………….. . 6 billion

· Research Centers………. . 6 billion

· R&D Contracts………….. . 9 billion

· Intramural Research….. 1.3 billion

· Management/Other….. .6 billion

Total………………..$7.2 billion

Where and to what extents there will be cuts is uncertain.

Understandably the community is upset, confused, disappointed and angered. While efforts to save NIH are underway, they are unlikely to be successful.

The potential magnitude of this loss is enormous, all the more reason that the community must plan now for the worst-case scenario. It needs to do what best-in-class industries and organizations do when their business is at risk – reengineer. The good news is that the pediatric brain tumor cancer research community has already started.

Research Approach Reengineered

What was accomplished in a short period of time was encouraging; the optimism for saving lives elevated to the highest level ever.

· They began by identifying the issues that were barriers to discovery.

· Next, they pinpointed the root causes of these barriers.

· From these learnings a plan was developed and implemented that transformed the pediatric brain tumor research community’s approach to research from siloed to collaborative, from data starved to data driven, from limited analytics to powerful algorithms, from a reliance on highly toxic treatments to an accelerating flow of innovative nontoxic treatments.

We now need a community-wide effort.

Pediatric Cancer Brain tumor Community Reengineered

The truth is that the pediatric brain tumor community has needed reengineering for decades. While resistant to change for years, it can no longer afford to be. We must remember that it is the lives of children we are fighting to save, not our own.

The community must now embrace change and engage in a community-wide reengineering initiative. One that will leverage the community’s collective resources and eliminate inefficient and ineffective practices; one centered around a culture of collaboration and focus.

Below is a process to do just that; one that will require representation from each sector of the pediatric brain tumor community.

Step 1: Issues identified 4/1/25

• Current:
  • Within each sector
  • Across sectors
• Resources eliminated from NIH/NCI

Step 2: Reengineering principles agreed

• Establish a community-wide mission; one that is audacious and measurable: To cut the childhood brain cancer death rate 50% by 2030.
• Embrace a set of research imperatives
  • Invest/contribute to a Comprehensive Brain Tumor Database: Expand and leverage an open-access database for global researchers to accelerate discovery.
  • Leverage Generative AI: Integrate artificial intelligence across the research process to enhance speed, accuracy, and innovation.
  • Develop Nontoxic Treatments: Focus on therapies that utilize the body’s immune system, angiogenesis, and/or apoptosis to target cancer cells.
• Commit to a set of unification imperatives:
  • Collaboration: Pooling resources, research, data, and funding to maximize impact.
  • Focus: Concentrating resources on fewer, high-impact initiatives to ensure greater progress.

Step 3: Plan Developed

• Multi sector leadership team formed.
  • Children’s Oncology Group
  • Research Institutions
  • Each of the three Pediatric Brain Tumor Networks/Consortiums
  • Large Nonprofits
  • Smaller Nonprofits
  • Pharmaceutical Companies
  • AI companies
  •  NCI/NIH
• Planning session
  • Leader from above group recruited
  • Consulting firm with extensive experience engaged
  • Executive planning team enlisted
  • Plans for multi sector leadership team completed.
  • Logistics finalized

A more detailed version of the above proposal has been submitted to a few select organizations that are well positioned to take a leadership role. I will report progress as it materializes.

Our January blog announced that the time had come for the pediatric childhood community to rally behind a common goal: to reduce childhood brain cancer deaths 50% by 2030. This requires the full engagement of the entire pediatric cancer community, with a collective commitment to three strategic imperatives:

· Create a Comprehensive Brain Tumor Database

· Leverage Generative AI

· Develop Nontoxic Treatments

Realizing these strategic imperatives will require a fundamental shift in the culture of the pediatric cancer community, centered around:

· Collaboration: pool /share research initiatives, resources, data and funding.

· Focus: harness more resources behind fewer initiatives.

An overview of the pediatric cancer brain tumor community follows:

· Research Sector: This includes all pediatric cancer research institutions that are not part of the private sector. From a planning perspective, it is important to note that five of the organizations account for most of the research while two hundred institutions belong to the Children’s Oncology Group.

· Nonprofits: It is estimated that 50% of pediatric cancer research funding comes from nonprofits. This sector can be divided into two categories:

•  The ten largest nonprofits that account for 80% of pediatric cancer research funding.
• Smaller nonprofits that are members of a pediatric brain tumor coalition or network.

· Public Sector: Principal participants are federal government entities, the National Cancer Instititute (NCI Funding/Policy and Cancer Research Centers), National Institutes of Health (NIH), Food & Drug Administration (FDA), and Legislators. While NCI manages the bulk of the load, each department is important.

· Private Sector: there are two primary segments, pharmaceuticals and technology (tech) companies.

• Pharmaceutical Companies: historically, this industry’s participation has been limited in the pediatric space. Recent legislation now requires a greater contribution and involvement by applying learnings from adult brain tumor research.
• Tech Companies: Companies involved with artificial intelligence (AI) can play a transformative role in accelerating the pace of pediatric brain tumor cancer discovery through data analysis, precision medicine, and more.

In the following blogs of this series, we will outline the expectations from each sector within the pediatric cancer brain tumor community.