Needed: A fully funded data federation for pediatric cancer with deep genomic sequencing and clinical records

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It was a thrilling moment for me when, sitting on my living room couch, listening to the State of the Union address, I heard the president say:

“Many childhood cancers have not seen new therapies in decades. My budget will ask the Congress for $500 million over the next 10 years to fund this critical life-saving research.”

The next day was even better, when I read a Politico article reporting Speaker Nancy Pelosi’s retort:

“$500 million over 10 years—are you kidding me? . . . Who gave him that figure? It’s like the cost of his protection of his Mar-a-Lago or something.”

Fantastic. At last, we, parents who have lost our children to cancer, are getting real political attention for our kids. My son, Jacob, died of a pediatric cancer when he was 10 years old.

Of course, Ms. Pelosi has a point—$500 million over 10 years might not get us to cures for childhood cancer. PhRMA claims it costs five times as much. I don’t know. But, dedicated to the right project, $500 million could still have significant impact.

President Trump seemed to make a significant personal commitment to this new $500 million in his State of the Union address. He brought out a beautiful girl who survived cancer, inspirational Grace. The president asked us to be emotionally invested in Grace, as he was. He told us that “nurses and doctors cried when Grace finished chemo.” He concluded: “Grace—you are an inspiration to us all.”

So—was the use of Grace and the offer of $50 million a year really an intention to give children with cancer funds for new research? Or was it a cheap shot to pull on our heart strings and ask for kind feelings toward Mr. Trump? Will the president and his administration invest the political capital necessary to make the additional commitment of resources to pediatric cancer a reality, or was it just an applause line in a very long speech?

We will have our first answer when the president publishes his fiscal year 2020 budget, which is expected to be next week. Presidential budgets are only recommendations to Congress and are only provided in broad strokes. While we would expect Mr. Trump’s budget to specify a funding number for the NCI, it’s not necessarily clear that it will specify funding for smaller programs within the NCI, such as a new $50 million pediatric cancer program.

And, if the president proposes instead an across-the-board cut in the NCI’s budget, then his offer of an additional $500 million for pediatric cancer research becomes magical math. In this world of magical math, we do not know if his $50 million per year is intended as an increase in pediatric cancer research funds or as compensation for any fiscal year 2020 cuts in pediatric cancer research funds.

There may be smoke and mirrors even if we see an additional $50 million or more in the president’s NCI budget. It is still unclear how the president’s $500 million relates to the Childhood Cancer STAR Act, which added $30 million per year to the federal budget for pediatric cancer research. Will the pediatric cancer programs be upped by only $20 million instead?

The pediatric cancer community will be pushing hard for new and incremental funding for the NCI. And it would be disingenuous for the president to talk about increasing spending for pediatric cancer research if he then requests a cut in NCI’s budget. That means robbing Peter to pay Paul.

But whether or not the president’s budget proposes an increase to NCI’s budget, we will urge the NCI to follow his prioritization and fund incremental pediatric projects however they can to the $50 million marker above the $30 million authorized under the Childhood Cancer STAR Act.

NCI has a terrific project for the funds—a data federation for pediatric cancer with deep genomic sequencing and clinical records. This platform needs to add value in both the clinical and research settings. Private industry’s resources and expertise in deep genomic sequencing and big data industry’s expertise and resources could be used in the design, construction, and population of this dataset.

Fully funded, with the $50 million plus-up, in addition to the portion of the $30 million of STAR Act funding dedicated to this project, whatever incremental Speaker Pelosi wants to contribute, and the participation of private companies, we could create one of the most robust datasets for any cancer population.

It could serve as a clinical and research tool to accelerate pediatric cancer research and draw in researchers, even from outside the pediatric cancer community, for years to come.

If we don’t get new funds—meaning the $50 million per year above the $30 million Congress authorized under the Childhood Cancer STAR Act, then Grace was just emotional bait. That would be really lousy. The president’s offer will have been a cheap shot, an exploitation of Grace and of all of us whose children have been treated for or have died of cancer.

I remain hopeful. NCI has lined up a terrific project. And, with NCI Director Ned Sharpless taking the lead, we have someone who is effective, who has the stature and who has the commitment to get it done right. Fully funded, this would be a transformational project.

Let’s get this done.

Nancy Goodman
Founder and executive director, Kids v Cancer


President Joe Biden’s proposed Advanced Research Projects Agency-Health would be a welcome partner to NCI—particularly in conducting large, collaborative clinical investigations, NCI Director Ned Sharpless said.“I think having ARPA-H as part of the NIH is good for the NCI,” Sharpless said April 11 in his remarks at the annual meeting of the American Association for Cancer Research. “How this would fit with the ongoing efforts in cancer at the NCI is still something to work out.”
Nancy Goodman
Founder and executive director, Kids v Cancer