The need to fight childhood diseases seems obvious. But the politics behind a push in Congress to fund additional pediatric research at the National Institutes of Health (NIH) have gotten pretty murky.
On 11 December the House of Representatives passed a bill  that would provide NIH with an estimated $126 million over the next decade for studies related to childhood diseases. The money would come from a fund created by a $3 checkoff box on U.S. tax forms, which earmarks the funds for public financing of presidential elections. Some 72 Democrats joined with an all-but-unanimous contingent of Republicans to provide the two-thirds majority needed to adopt the legislation, which has been championed  by House Majority Leader Eric Cantor (R-VA).
The bill, H.R. 2019, is named the Gabriella Miller Kids First Research Act. Miller was a 10-year-old Virginian girl who died last year of a brain tumor, and the bill initially drew rave notices from dozens of biomedical research and disease advocacy groups. “We strongly support increased funding for NIH, and appreciate your identification of medical research as a priority in a time of deficit reduction and fiscal austerity,” a coalition of universities and biotech companies called United for Medical Research (UMR) wrote to the bill’s sponsor, Representative Gregg Harper (R-MS) on 27 June. It’s “a great step in the right direction to put the NIH back on a plan for reasonable growth,” the American Society of Clinical Oncology wrote in a 10 July letter thanking Harper for introducing the bill.
Last week, Virginia’s two Democratic senators, Tim Kaine and Mark Warner, teamed up with Republican Orrin Hatch  of Utah to create what they hope will be a similarly successful bipartisan coalition in the Senate. Kaine and Warner say they were swayed by Miller’s parents. “The cause is good. Once you talk to people about the need for more pediatric research, they get it,” Kaine told local media.
But the Senate trio won’t be getting the same kind of supportive letter from UMR that the group sent the bill’s House sponsors this past summer. “We have no plans to take any other action on the legislation,” UMR President Carrie Wolinetz tells ScienceInsider.
Why the about-face? “We had hoped that the bill would be a starting point for a broader discussion” about the importance of restoring cuts to NIH’s budget from last year’s mandatory sequestration, says Wolinetz, who is a lobbyist for the Association of American Universities. “But it’s turned out to be a distraction.”
She and other research advocates worry that Congress may feel that “the job is done” once it approves this small boost for pediatric research and forget about the bigger problems facing the $30-billion-a-year agency. Ironically, she says that Cantor’s “passionate support” has given the bill a “high profile politically” that could increase the likelihood of such a response. “We’d prefer that the Senate take up the broader issue of adequate funding for NIH,” Wolinetz says.
Several House Democrats explicitly questioned the commitment of their Republican colleagues to the issue before the vote this past December. “We all want to fund more research to fight pediatric disease. Nothing could be a more worthy objective,” said Representative Henry Waxman (D-CA) on the House floor before joining a majority of the body’s Democrats in voting against the measure. “If we could only reverse the cuts that this House has adopted under Republican leadership, the [NIH] could make an even greater amount of progress in understanding and treating so many different devastating diseases for children and others.”
H.R. 2019 would bar the public financing funds from being used for national political conventions, putting them instead in a “10-Year Pediatric Research Initiative Fund” within the Common Fund managed by the NIH director. (Presidential candidates could still use money from the fund for their campaigns, but recent candidates have declined to accept the money because acceptance imposes a ceiling on overall spending.) The legislation says that NIH cannot use the money for any other purpose, and the nonpartisan Congressional Budget Office has estimated that the mechanism would yield $12.6 million a year. However, there would be no mention of pediatric research on the tax forms that offer the checkoff.
For supporters of public financing of presidential campaigns, the Harper/Cantor bill is an outright disaster. “H.R. 2019 would repeal a portion of an anti-corruption campaign finance law which has served the nation well … and has provided ordinary Americans with a critical role to play in financing presidential elections,” a coalition of election watchdog groups argue in a 14 January letter to senators. The current system, they say, “needs to be repaired, not repealed.”
Those advocates have tried to rally support for their cause by suggesting that the money wouldn’t actually fund additional pediatric research. They say that’s because continued cuts to domestic discretionary spending, under the 2011 Budget Control Act that created sequestration, would continue to eat away at NIH’s budget and, by extension, its ability to fund pediatric research. “The bill does nothing to change those policies and nothing to increase the amount that the Appropriations Committee has available to support biomedical research,” a group of House Democrat appropriators wrote last fall in a letter to their legislative colleagues.
Cantor admits that sequestration is harming NIH. But he says the Kids First bill addresses another issue. Specifically, Cantor was looking for a way to support pediatric research without additional government spending, and asked Harper if he’d agree to alter his bill to terminate public funding of the national conventions to serve that purpose.
“Some of my colleagues on the other side of the aisle say this is just a drop in the bucket compared to the sequester cuts. I agree,” Cantor said on the floor. “But let's not let Washington politics get in the way of any effort to help these kids. … This bill is a choice between allocating moneys for political conventions or pediatric medical research.”
Prospects for a Senate vote are unclear, although Kaine told local media last week that he thought the problem was more logistical than philosophical. “Often the biggest hurdle in the Senate is just getting floor time on something,” Kaine said to the Loudoun County Times-Mirror. “I would say that is what we're strategizing.”