The Age of Autism: HHS eyes Amish study

By DAN OLMSTED  |  June 27, 2005 at 4:26 PM
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WASHINGTON, June 27 (UPI) -- A top U.S. health official is considering whether to launch studies of the Amish -- and perhaps other unvaccinated groups -- in response to United Press International's articles about a low prevalence of autism in that community, according to several people who spoke with him last week.

William F. Raub of the Department of Health and Human Services suggested this possibility at a private meeting at HHS headquarters in Washington, participants said. His comment adds to recent signs that some federal officials monitoring autism research and funding have not ruled out a possible vaccine link.

Raub is principal deputy secretary for the Office of Public Health Emergency Preparedness. He has held a number of key government posts, including acting counselor for science policy to HHS Secretary Mike Leavitt and deputy director of the National Institutes of Health.

His comments came after the group, mostly parents of autistic children, brought up UPI's series on the apparent low prevalence of autism among the U.S. Amish population. Most Amish parents do not vaccinate their children.

A full-scale epidemiological study of one or more unvaccinated populations could help determine whether there is a link between childhood vaccinations and autism. The parents who met with Raub think there is, while the medical establishment firmly rejects that theory.

The parents said Raub described UPI's findings as "interesting" and discussed several ways to launch a study. One alternative he described was for the National Institutes of Health to initiate a request for applications, known as an RFA, from researchers interested in the topic.

The parents emphasized that Raub made no commitment to such a study but said his attitude seemed open-minded and attentive during the two-hour meeting.

An HHS spokesman did not respond to UPI's request for an interview with Raub or confirm the parents' description of the meeting.

If such a study were done, it would apparently be the first to look at a specific group of unvaccinated individuals to determine the prevalence of autism. The Centers for Disease Control and Prevention in Atlanta has reported the rate of autism spectrum disorders is now one in every 166 children born in the United States.

UPI's reporting turned up only a handful of autism cases among the Amish, and two doctors who treat thousands of Amish children said they were aware of only one case between them. That child had been vaccinated, as had three others identified by UPI. A minority of Amish parents have begun allowing their children to receive routine immunizations.

A doctor in Virginia said he was treating six Amish children with autism, none of them vaccinated. He attributed the disorder in four of the cases to environmental mercury pollution.

Even the idea of doing more research into a possible vaccine-autism connection has become controversial. Last year a panel of the prestigious Institute of Medicine -- part of the National Academy of Sciences -- said there is no link and recommended that future research go to more "promising" areas.

Yet there are signs some high government officials are withholding final judgment on the autism-vaccine argument, which centers on a mercury preservative called thimerosal that was used in an increasing number of childhood vaccines beginning in the early 1990s.

Dr. Julie Gerberding, the CDC's director, told Congress last year she is keeping an "open mind" about a possible link. She repeated that sentiment in an interview with NBC television this past spring, a year after the IOM called the case closed. The CDC recommends the childhood-immunization schedule, which states then adopt.

Meanwhile, participants in recent meetings have described some congressional committee staffers, state government officials and White House aides as remaining concerned about the issue.

"All over Capitol Hill, we encountered thoughtful, intelligent, compassionate people -- Republicans and Democrats -- who seem truly committed to getting the difficult answers that the American people deserve," author David Kirby wrote over the weekend on huffingtonpost.com. Kirby is the author of the new book "Evidence of Harm" about the vaccine-autism controversy.

"Call me naïve," he added, "but I have great confidence in their integrity and resolve."

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UPI welcomes comments on this column. E-mail: dolmsted@upi.com

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