The resources are available today to cure pediatric cancer. We’ll explore this in the third installment of a five-part series that provides the framework necessary to unlock these resources. The key drivers are:

Today’s blog focuses on government, specifically the National Cancer Institute (NCI) – what it needs to do better and what it needs to stop doing. Let’s start by looking at the National Cancer Institute’s FY 2020 Annual Plan and Budget Proposal. It calls for funding in four areas to:

  • Develop the workforce of cancer investigators.
  • Reaffirm our commitment to basic science to drive novel approaches and technologies.
  • Innovate the design, administration, and analyses of clinical trials.
  • Increase data aggregation and interpretation to speed work across the cancer enterprise.

The first two areas are what the NCI should stop doing. The latter two are what the NCI needs to do better and soon.

What NCI needs to stop doing

  1. NCI, like other government institutions, has grown so large and diverse in its responsibilities that it is inefficient and ineffective. Like the failed model of corporate conglomerates that were once popular, NCI is trying to do too many things. The result is an unfocused approach to fighting cancer with incremental results.
  2. Like all large bureaucracies, NCI’s focus is on maintaining and increasing the flow of taxpayer dollars to its programs. The institute’s 2020 budget proposal calls for spending more than $6.5 billion, with $662 million in new spending, including an additional $70 million for “understanding the mechanisms of cancer” and an additional $35 million for “strengthening the cancer research enterprise.”

Why should this be the role of the federal government, when the private sector, universities, and medical institutions can do the job better? It should be up to each individual to decide which institutions they want to donate to or invest in, not the government. Government should not be in the business of human resource development, or investing taxpayer money in the private sector. This is a distraction that helps explain why we still don’t have a robust national pediatric database, nor a clinical trial process designed specifically for pediatrics.

What NCI needs to do better

  1. Improve the clinical trial process. This is and should be the responsibility of NCI. It is important that all research follow a standard protocol. However, what we have today is outdated and was never designed for pediatric cancer research. Studies have uncovered flaws in the clinical trials process, including the FDA setting benchmarks that are outdated by the time trials start, and testing inadequacies that lead to experimental drugs failing in the final and most costly phases of trials. We should hold NCI accountable for delivering a faster and more effective clinical trial process and monitoring the results.
  2. The fourth area in the latest budget, data aggregation and interpretation, is by far the most important. Translated, this means building a robust national pediatric cancer database – one that includes information from every single institution involved in pediatric cancer, including research, patient data, clinical studies on drugs, and research into promising alternative therapies. This will require addressing many of the barriers that prevent organizations from collaborating at the level required, including addressing privacy laws and technology to convert handwritten patient records into digital formats.

Our government is too large; as a result, it is inefficient, ineffective, and poorly governed. It reminds me of the corporate conglomerates that dominated business in the 1960s and 70s, but disappeared in the 1980s because they were too large and unfocused.

Most private corporations today recognize the value of specializing in doing a few things well. It’s time for government to do the same, introducing the U.S. Millennial Government – where technology, focus, and organizational effectiveness generate results above expectations. In this case, NCI as a part of the U.S. Millennial Government needs to revisit its budget with a focus on building a robust national pediatric database, and modernizing and streamlining the clinical trial process.

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