As Congress scrambles in the next few days to wrap up its work for the year, lawmakers are on a collision course over how best to fund medical research.
The House has passed a bipartisan bill that would give more authority to scientists to determine research priorities.
The Senate, meanwhile, has passed a measure that would expand research into the causes of autism. Together, the bills illustrate an almost age-old tension on Capitol Hill — whether scientific priorities should be based more on the political process or medical expertise.
On one side are people like Elizabeth Emken of Danville, Calif. She knew there was something wrong with her son Alex when he was 2 years old. It would be two more years before she got a name for his condition — autism.
"The doctor sat us down when he was diagnosed and said, 'This is chronic. It's incurable. There's no medical protocol. We suggest you go educate yourself,' " she said. "And they sent us out the door. There was no one to go see."
That was 10 years ago. Since then, Emken has made it her personal mission to get more money for autism research, not just for her own son, but for the millions of other Americans — mostly boys, mostly children — diagnosed with the condition.
"If one in 166 kids were being kidnapped every day and lost forever, it would be a national emergency. We'd have everybody on it. And that's what's happening," Emken says. "And really, the most frightening thing is we don't know why it's happening. And we can't stop it."
Through the efforts of Cure Autism Now, where Emken serves on the board, and other advocacy groups, Congress six years ago passed a bill to boost research funding for autism. Last summer the Senate unanimously passed a follow-up bill called the Combating Autism Act. It not only calls for a doubling of funds for autism research, but also for autism screening, surveillance and early intervention programs in all 50 states.
"The component parts of this bill are important," Emken says, "but almost more important is the statement by Congress that we have a true national emergency going on and we have to address it."
But a funny thing happened to the autism bill on its way to the House. It ran headlong into an effort by a key committee chairman to overhaul the way the National Institutes of Health funds medical research.
The NIH has long been a bipartisan favorite on Capitol Hill, but that Congressional largesse has often come with strings attached — more money, but to study particular diseases, like autism, for example.
Many doctors and scientists, however, say that's simply not the way science works best. Leo Furcht is president of the Federation of American Societies for Experimental Biology, one of dozens of scientific groups supporting the NIH bill, which passed the House in September with only two dissenting votes. Furcht says while he's sympathetic to parents of children with autism or any other ailment, bills that fund only a single disease simply don't make sense.
"At the end of the day that's not where the most important success in finding a cure or a treatment may come from," Furcht says.
He points to the recent discovery of the first effective treatment for a form of macular degeneration, a major cause of blindness. Scientists who discovered the drug weren't studying the eye.
"The application of the first drug being used for that came out of basic research on cancer and how blood vessels grow," Furcht says. Studies on wound healing also contributed to the research.
Autism groups supported the broader NIH bill when it passed the House. They hoped, in turn, the sponsor of that bill, outgoing House Energy and Commerce Chairman Joe Barton of Texas, would help push their autism bill. But that hasn't happened. Now some leading voices in the autism advocacy community, including radio host Don Imus, have had harsh public words for Barton. And Emken disputes Barton's notion that the two measures are incompatible.
"Human suffering is not a competitive sport," she says, "but what makes autism different? What makes autism different is the history of neglect into the disorder. It's remained such a mystery that science has been very slow to address it," she says.
But even if the autism bill does get passed and signed, that's just a first step. The bill would still have to get funded as part of the appropriations process, and there's no guarantee that will happen.
Dave Moore is executive director of the Ad Hoc Group for Medical Research, which lobbies Congress to increase spending for NIH. He says even with Democrats taking over, budgets will likely be tight for some time to come.
"We still have a very large deficit," Moore says. "We still have a very large war that we're trying to conduct. We still have a number of other priorities, such as homeland security, that have to be funded. So the support for medical research is going to have to be viewed in the context of these larger budget decisions."
As for the fate of Rep. Barton's NIH bill in the Senate, spokesmen for key senators will say only that they're looking the measure over, hardly a ringing endorsement with so few days left in the session.