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The slimmed-down version was stripped of language that would have allowed children with relapsed cancer to undergo treatments with a combination of cancer drugs and therapies. (Currently the Food and Drug Administration is only authorized to direct pediatric cancer trials of single drugs.) The bill also didn't include an extension of a program that gave financial lifelines, in the form of vouchers, to small pharmaceutical companies working on rare pediatric diseases. It was also missing earlier provisions that would have allowed for kids on Medicaid or CHIP"that is, poor children"to access medically complex care across state lines.
For political veterans, however, the most striking absence in the revised bill was the language that would have extended funding for the Gabriella Miller Kids First Research Program.
The program, named after a 10-year-old Virginia girl who died from an inoperable brain tumor in 2013, was something of a miracle to begin with. When it passed in 2014, the Obama administration and congressional Republicans had been at a standstill over federal spending. Sequestration cuts had taken a big bite out of the budget of the National Institutes of Health. The $126 million that the bill authorized over a ten-year period to help fund pediatric cancer research was minor compared to the $1.55 billion the NIH had lost in appropriations. But it was also the product of painstaking negotiations, with then-House Majority Leader Eric Cantor (R-Va.) expending significant political capital to ensure that the law got passed.
"It was a turning point in pediatric cancer research and I've never been prouder of the entire Congress for rallying behind it," recalled Rory Cooper, a former Cantor aide.
But the funding needed to be extended. And the bill that the current crop of congressional leaders agreed to earlier this week did just that, devoting an estimated $190 million to the program through 2033.
The presumption among the compromise bill's authors and advocates was that it would sail through. Rep. Jennifer Wexton and Sen. Tim Kaine, both from the Miller family's home state of Virginia, put out a press release applauding its inclusion in the continuing resolution. The Facebook page for the Smashing Walnuts Foundation put up a post declaring that the "Gabriella Miller Kids First 2.0" had passed "and will be signed into law!" It was signed by Gabriella's mother, Ellyn Miller. "From the bottom of my heart," it read, "THANK YOU!"
That was December 17. By December 19, the provision had been axed from the bill, after Musk went on an X rampage, tweeting that the bill was a Christmas tree that was antithetical to conservative, small-government ambitions and threatening the primary lawmakers who supported it.
