Autism Bill Sparks Debate on Funding Research Lawmakers are on a collision course over how best to fund medical research as two bills demonstrate an age-old tension on Capitol Hill: Should scientific priorities should be based more on the political process or medical expertise?

Autism Bill Sparks Debate on Funding Research

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This is MORNING EDITION from NPR News. In for Renee Montagne, I'm Deborah Amos.


And I'm Steve Inskeep. Good morning.

Here are two complications in the medical research that many Americans depend on. First, a drug maker found its heart drug actually increased heart problems, and we'll have more in a moment.

AMOS: The second complication is politics. The federal government funds a lot of medical research, and the question is, who decides where that money is spent? The House passed a bill that would give more authority to scientists to determine research priorities. But the Senate, lobbied by advocates, has passed a measure to expand research specifically into one disease: autism.

NPR's Julie Rovner begins with what's at stake.

JULIE ROVNER: Elizabeth Emken of Danville, California knew there was something wrong with her son Alex when he was two. It would be two more years before she got a name for his condition: autism.

Ms. ELIZABETH EMKEN (Board Member, Cure Autism Now): The doctor sat us down when he was diagnosed and said, you know, this is chronic, it's incurable. There's no medical protocol. We suggest you go educate yourself. And they sent us out the door. There was no one to go see.

ROVNER: 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, diagnosed with the condition.

Ms. EMKEN: 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. Really, the most frightening thing is we don't know why it's happening, so we can't stop it.

ROVNER: 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.

Ms. EMKEN: The component parts of this bill are incredibly important, but almost more important is the statement by Congress that we have a true national emergency going on right now, and we have to address it.

ROVNER: 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 all 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 House-passed NIH bill. He says while he's sympathetic to parents of children with autism or any other ailment, research bills that fund single diseases simply don't make sense.

Mr. LEO FURCHT (President, Federation of American Societies for Experimental Biology): Because at the end of the day, that's not where the most important success in finding a cure or a treatment may come from.

ROVNER: For example, says Furcht, scientists recently came up with the first effective treatment for a form of macular degeneration, a major cause of blindness.

Mr. FURCHT: The application of the drug that is being used for that came out of basic research on cancer and how blood vessels grow, and studies on wound healing. That didn't come from doing research on the eye.

ROVNER: 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 Committee Chairman Joe Barton of Texas - would help push the 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.

Ms. EMKEN: Human suffering is not a competitive sport. 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.

ROVNER: 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 a coalition of patient and research groups that lobby Congress to get more money for NIH. He says even with Democrats taking over, budgets will likely be tight for some time to come.

Mr. DAVE MOORE (Executive Director, Ad Hoc Group for Medical Research): We still have a very large deficit. 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.

ROVNER: As for the fate of Chairman 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.

Julie Rovner, NPR News, Washington.

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