"It's just appalling," said Jim Moody, counsel to SafeMinds, a group that backs research into a possible link between autism and a mercury preservative called thimerosal that was used in childhood vaccines. He said a number of scientists -- including researchers at Columbia University, the University of Washington and the University of Arkansas -- have been turned down for federal grants to follow up on such studies.
"They're doing cutting-edge work that is being published in nationally significant journals on important issues of national health policy," Moody said, suggesting the projects are being denied for reasons other than merit.
Moody and others said the shutdown stems largely from a recommendation last year by the Institute of Medicine, part of the National Academy of Sciences. The study found no link between vaccines and autism and suggested that money should go to more "promising" areas of autism research.
"It's not surprising it's happened," Moody said of the difficulty finding grant money. "They (the IOM) said it should happen."
Last month on NBC's "Meet the Press," moderator Tim Russert asked IOM President Harvey Fineberg, "You're absolutely convinced there's no connection between thimerosal and autism?"
To which Fineberg responded: "I'm convinced that the best evidence all points to the lack of an association. These studies can never prove to the point of absolute certainty an absence of an association, but I would say this: Other avenues of research looking at other possible causes today are much more promising ways to spend our precious resources."
A number of other studies and funding sources are being explored by advocates who say the vaccines-mercury issue deserves more scrutiny. Among them:
-- Environmental attorney Robert F. Kennedy Jr., who last week discussed launching an independent study of vaccination records at the Centers for Disease Control and Prevention in Atlanta.
Kennedy volunteered his clout as a fundraiser and said he could make lawyers available to go after the federal government if it denied access to the database.
Kennedy also discussed using a never-vaccinated group, probably the Amish, as a "control" to assess relative autism rates. United Press International reported earlier this year that autism seems significantly less prevalent in that community, based on anecdotal information and the assessment of doctors who treat the Amish.
-- Sen. Joseph Lieberman, D-Conn., who said last week he plans to ask Congress to fund an independent review of the thimerosal issue and of the statistical analyses performed by the CDC.
Lieberman has become a vocal advocate of continued investigation of a possible link between thimerosal and autism. Some critics argue the CDC has an inherent conflict of interest in examining the issue, because the CDC recommends the childhood immunization schedule that is adopted by the states.
-- Rep. Dave Weldon, R-Fla., who told Age of Autism he wants to fund a study of autism rates among the Amish compared with surrounding communities. Weldon, a medical doctor, is a member of the powerful House Appropriations Committee.
--William Raub, a top official of the Department of Health and Human Services who told parents this summer that a study of the Amish or similar group was an interesting idea and could be done via the National Institutes of Health.
Last month a group of scientists and advocates met with officials of the National Institute of Environmental Health Sciences -- a unit of the NIH -- to outline research into possible environmental causes of autism. Raub attended part of the meeting.
Called Environmental Factors in Neurodevelopmental Disorders, the two-day seminar tackled a wide range of possible research topics, including mercury toxicity. Participants are now formulating a research roadmap to present to the NIH and Congress.
The seminar was held in Bethesda, Md., and was sponsored by the National Autism Association and SafeMinds with a grant from NIEHS.
Such developments persuade SafeMinds counsel Moody the funding dearth is "a temporary glitch. I'm fairly sure we'll get this fixed," but Moody said the lack of interest in such research -- in fact, the interest in discouraging it -- is suspicious.
"If I wasn't convinced of the connection between mercury and developmental disorders," he told Age of Autism, "what would convince me is the inaction."
This ongoing series on the roots and rise of autism welcomes reader comment. E-mail: firstname.lastname@example.org
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