Elon Killed the Budget Deal. Cancer Research for Kids Was Collateral Damage.
Advocates were celebrating the inclusion of money and provisions to help fund pediatric research. And then the tweets started.
THE DECISION BY REPUBLICAN LEADERSHIP to scuttle a bipartisan funding deal on Thursday night has left lawmakers scrambling and others anxiously bracing for a government shutdown.
For a host of issue advocates, however, the prevailing mood in Washington, D.C. was one not of chaos but utter devastation.
The initial deal that congressional leaders had agreed to included a number of key priorities that, in the course of hours, were jettisoned by GOP leaders looking to calm Elon Musk’s pique and satisfy Donald Trump’s demands. And though the slimmed-down bill that Trump endorsed in its place failed to pass the House, few people expected that the initial deal would make a comeback—meaning that many of its components were likely gone for good.
The list of provisions left in the dust heap was lengthy. The initial compromise bill included language to ensure that providers of internet service to rural areas weren’t ripping off customers, to protect consumers from hidden hotel fees, to secure semiconductor supply chains, to restrict U.S. outbound investment in China, even to prohibit deepfake pornography. All those were all gone in the successor bill.
But some of the hardest cuts to swallow involved medical research. In particular, advocates say, the revised funding bill delivered a devastating blow to the fight against pediatric cancer.
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.
When it did, it resembled a rare moment of serenity in an increasingly bitter and divided capital. Gabriella Miller’s family, who started the Smashing Walnuts Foundation, attended the signing ceremony.
“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.
Nancy Goodman, the founder and executive director of Kids v. Cancer, called it “a completely heart-wrenching outcome.” Like Ellyn Miller, her child died of cancer (succumbing at the age of 10 to medulloblastoma). And like Ellyn Miller, Goodman had turned her grief into advocacy. She spent four years working on the Give Kids a Chance Act, which would have allowed FDA authorization of combination cancer treatments.
“We spent a lot of time putting together policies with broad bipartisan support to help kids seriously ill,” she said in an interview with The Bulwark. “How can it be that our society is not thinking about the most vulnerable children and doing everything they can to help them? How can we cut this out in the name of efficiency? How does that make sense?”
Goodman said she began to fear for the worst on Wednesday when she got calls from several staffers relaying that House Republican leadership was worried about the fate of the compromise bill and was trying to whip support for it. Those staffers suggested that she and others put together a letter from doctors and advocates and anyone in the pediatric cancer leadership community urging that it remain in the bill. They got more than 740 people to sign on.
“A vote for the funding bill is a vote for children with cancer,” it read.
But then, Musk began posting.
“I started following [Punchbowl’s] Jake Sherman on Twitter. And then I started following him every three minutes,” said Goodman. “And suddenly I saw these tweets from Elon Musk and then just thought, ‘Oh my God, it’s done.’ His tweets were so damning.”
ON THURSDAY EVENING, after even the slimmed-down government funding bill failed, conservatives and Republicans on Capitol Hill suggested that lawmakers try an even slimmer version. Some proposed letting the government simply shut down. As for all the provisions that were in the initial bill, they offered that those could and even should be considered as standalone pieces of legislation when the next Congress convenes. Continuing resolutions, they noted, are not meant to be vehicles to move important pieces of legislation; Congress can craft budgets for that through regular order.
But that hasn’t been the reality in Washington for a while. And Goodman isn’t holding out much hope that things will change. It’s not just that the process will be incredibly laborious—each individual bill will now have to pass each congressional chamber before finding its way to Donald Trump’s desk—it’s that lawmakers may very well have other priorities they feel the need to address.
“The biggest challenge all these bills face is not opposition,” she noted. “It’s apathy.”