Pitt working to replace $9 million federal autism grant
October 1, 2012 4:00 AM
Nancy J. Minshew, professor of psychiatry and neurology at University of Pittsburgh School of Medicine
By Mark Roth Pittsburgh Post-Gazette
The loss of the single largest federal grant to the University of Pittsburgh's autism research center is not a death knell, but is a serious setback, autism researchers say.
After 15 consecutive years of funding, Pitt's Center for Excellence in Autism Research did not get a renewal last month of its core $9 million, five-year grant from the National Institutes of Health. The decision essentially gives the center a year to 18 months to find replacement funding, said Nancy J. Minshew, the center's program director.
"I've been in this kind of situation for many years," she said. "Grants only run a finite period of time, and then you've got to get new grants. As one of my researchers said, grants come and go, but the autism work has a life of its own. We won't give up and we're not stopping."
U.S. Rep. Mike Doyle, D-Forest Hills, who is co-chairman of the autism research caucus in Congress, said he will help the center seek replacement dollars.
"I'm disappointed that Pitt didn't receive funding in this round, but we've been in touch with Pitt and NIH and we're working to do what we can to help the folks at Pitt explore other avenues of funding to continue their important research."
Despite the stiff-upper-lip attitude from Dr. Minshew and Mr. Doyle, one prominent autism researcher said the NIH decision was a blow for Pitt and four other national autism excellence centers that did not get renewal funding.
"There's no doubt that some of the best research groups in the world didn't get re-funded and they should have," said Susan Bookheimer, the principal investigator at the autism excellence center at the University of California at Los Angeles. UCLA's center was the only one out of six that got renewal funding, and she said she was particularly shocked that the centers at Pitt, the University of Illinois at Chicago and the University of California at San Diego lost out.
Officials at NIH could not be reached for comment on this year's funding decisions.
As a practical matter, Dr. Minshew said, the loss of the principal grant has meant having to lay off three of the center's 12 staff, and will mean having to seek at least $600,000 in interim donations over the next couple of years while the center applies for new federal grants.
Ms. Bookheimer, who has a doctorate in neuroscience, said the autism excellence centers don't just conduct research, but serve as the primary recruitment and testing centers for the autistic people in their regions, who are then funneled into studies by various scientists who use brain imaging, genetic analysis and behavioral interventions to study and treat the disorder.
Dr. Minshew said she's had to start telling younger researchers she can't help them with their studies.
"That's a loss, because I no longer have unlimited recruiting capacity, and I have to make sure the main studies I support have money to help with recruitment."
Centers like the one at Pitt also are hubs for educating parents about the disorder, connecting them to the right services and advocating for changes in the law.
One person who has been involved in the NIH review process and asked not to be identified noted, however, that the scientists who consider the applications have to focus on their scientific merit alone. "While it's unfortunate, the lack of future support for patient recruitment for studies at a center is not a primary consideration," the person said.
The Pitt center still has federal, state and private grants totaling about $5.7 million, some of which will run through 2014, Dr. Minshew said.
Alison Tepper Singer, founder of the Autism Science Foundation in New York, said she doesn't necessarily think the centers that lost funding should have been favored over the institutions that did get grants this year.
"I think the universities that were on the list were worthy of being funded, but I think there are many other projects that were deserving and critically important that were not funded. The problem is, the list is just too short. With all that we've learned in recent years, this is the time in autism research to step on the gas, not the brake."
The Pitt center's setback is part of a long-term trend. Several years ago, NIH funded 10 national autism research centers. When the previous round of funding was completed in 2007, there were six centers. In the latest round, there are just three.
The federal agency handed out $100 million to research centers and networks this year, the same as five years ago, but with inflation, that amounts to 10 percent less money.
Many scientists and advocacy groups complain that overall federal research funding is too low, but people in the autism community feel they are at a particular disadvantage.
Despite the increasing number of diagnosed cases of autism in the United States, Ms. Singer said, "politicians fund diseases for people who are of voting age, and certainly we've seen the federal administration make much more of an effort to fund research for Alzheimer's than for autism, for example, and that's really disappointing."
"When you think about the percentage of Americans who are affected by autism," added Ms. Bookheimer, "you see that disorders that affect a lot fewer people such as HIV and many cancers are getting a whole lot more research money."
At Pitt, Dr. Minshew said she wants to make sure the center's central work -- studying children at risk of getting autism, comparing the effectiveness of different treatments and funding brain imaging work by Carnegie Mellon University researchers Marcel Just and Marlene Behrmann -- continues.
"I think the challenge for us is to keep the car running uninterrupted while we reconstitute our funding," Dr. Minshew said. "NIH can make an abrupt left turn at any time, and that's what seems to have happened, and the first response can be 'this is horrible,' but all of us feel incredibly fortunate to have had 15 years of support."