I posted a comment on the Autism Speaks slogan thread that what would bring Autism Speaks to it's knees would be if the big funding agencies (including congress and whatever) figured out that the AS had been lying to them.
Without big donations based on fear of a horrifying autism epidemic, neither AS or ASA would be much. They run on big money, they love big money. Congress is starting to question all the hype.
Keep in mind that the big money that was promised to go into "autism research" was basically being robbed from other research, since their is a limited amount of money coming from the Feds for medical research period.
Sure research into the cause of autism is interesting and important, but is it as important as finding a cause for liver cancer or a cure for AIDS or Cancer or ??? If you or your child has liver cancer and autism, I'd guess that you'd rather have a cure for your cancer found first. I'd put asthma way ahead of autism personally, because I have asthma (reactive airways).
Quote:
CQ WEEKLY – IN FOCUS
Dec. 17, 2007 – Page 3697
Spending Surge on Autism Outpaces Understanding
By Alex Wayne, CQ Staff
Members of Congress, as a rule, say they don't like to tell scientists how to focus their research, let alone decide whether one disease or affliction merits more money than other. But over the past year, the House and Senate have steadily issued directives and earmarks promoting research into autism — a little-understood neurological disorder with no known cure that until recently was overshadowed by depression, attention deficit disorder and other developmental disabilities.
The reason lies in an increasingly effective lobbying campaign by patient advocates and parents, who amplify alarming government statistics with agonizing stories of how their children descend into patterns of repetitive behavior and rigid routines that impair their ability to communicate and relate to others.
"It's as if one in 150 children was being kidnapped," Bradley Whitford, a star of "The West Wing," told the Senate Appropriations Subcommittee on Labor, Health and Human Services and Education at a hearing earlier this year. "What would this Congress do if that was the case?"
The appeals had their intended effect on the year-end crush of fiscal 2008 spending requests, as research advocates press for $37 million for autism monitoring and studies, another $16.5 million for autism screening and more than a dozen earmarks for research projects at local universities, the fate of which will be decided in the year-end omnibus spending package.
Autism advocates have in recent years largely consolidated their advocacy efforts under one umbrella organization called Autism Speaks and increased their spending on lobbying. The chief lobbyist for Autism Speaks, Craig Snyder, a former chief of staff to Pennsylvania Republican Sen. Arlen Specter, says that more members of Congress are personally connected to people with autism.
"When I started working on autism 10 years ago, there were very few members who knew anything about it and very few members who had any personal connection to it," Snyder said in an interview. "We've reached the point where there's almost no American family that's not touched by autism."
But the question for some public health experts is whether the incidence of autism is proportional with congressional interest.
Much of the advocates' message revolves around a single statistic from the Centers for Disease Control and Prevention: autism, once thought to be exceedingly rare, is now diagnosed in as many as one in 150 children, making it five times more prevalent than Down syndrome, the most common known cause of mental retardation. The CDC projects that some 560,000 children under age 21 could be diagnosed with the condition.
By depicting the condition as a mainstream public health threat, Snyder and other autism advocates scored a coup last December, when they persuaded Joe L. Barton of Texas, then the GOP chairman of the House Energy and Commerce Committee, to support legislation setting new benchmarks for autism research and screening. Barton has long been wary of such efforts, saying they amount to micromanaging biomedical research.
Snyder also has targeted appeals at other influential chairmen, pointing to the condition's human toll on patients and their families, and the expense to society. His arguments are reinforced by a 2006 Harvard School of Public Health study that estimated that autism costs the country $35 billion per year in treatment and lost productivity.
Sen. Tom Harkin, the Iowa Democrat who chairs the Labor-HHS Appropriations Subcommittee that oversees biomedical research spending, cites the evidence as justification for a strong response, calling the condition a "growing menace."
"It's almost like an epidemic right now," Harkin said in an interview.
A Premature Reaction?
But some public health experts question whether Congress is reacting prematurely — or even overreacting — noting that federal researchers do not know with certainty how many Americans have the condition and cannot verify claims that autism is on the rise. As a result, it is not clear whether autism is actually becoming more commonplace, or if it is simply diagnosed more frequently as researchers fine-tune screening and broaden their definition of the condition.
The CDC has periodically measured the prevalence of autism in groups of 8-year-olds, but has not tracked the number of new cases reported over a period of time. Such a measurement of disease incidence could conclusively establish whether autism has become an epidemic.
The lack of sufficient data worries experts, because federal funding for biomedical research has been flat in recent years, creating fierce competition among patient advocacy groups.
"The scientific community has yet to be convinced that there is some kind of autism epidemic," says Roy Richard Grinker, a professor of anthropology at George Washington University who studies autism epidemiology across cultures. "Scientists do not use the phrase 'autism epidemic.' Advocates use it; politicians use it; scientists do not."
Barton says he still has reservations about congressional research directives in spite of his change of heart on the autism center.
The way the National Institutes of Health "has been changed in the past is that some outside group creates a stakeholder group, and all of a sudden there's a new building at NIH," Barton said in an interview.
The debate over how to respond to autism is partly because of the complex, still little-understood nature of the condition — and the fact that individuals diagnosed with it display a wide range of symptoms, from compulsive and antisocial behavior to severe mental retardation. The condition has no single known cause and no cure.
"We know that there are very strong genetic contributions," says Dr. Eric Hollander, director of the Seaver and New York Autism Center of Excellence and chairman of psychiatry at Mt. Sinai School of Medicine. "It's clear that there's no single gene with a major effect, and there are multiple genes with minor effects."
Some patient advocates have also raised questions about environmental factors, contending that a mercury-based preservative called Thimerosal used in childhood vaccines contributes to autism's prevalence. An Institute of Medicine panel found no proof of the connection, but use of the preservative has been largely discontinued. One rider in the year-end omnibus would require manufacturers of children's flu vaccine to stop using the preservative by 2010.
Assessing Need
For decades after it was first identified as a childhood behavioral disorder in 1943, autism was diagnosed in four to five children per 10,000. But after examining data from new studies of the condition's prevalence in children, the CDC and the American Academy of Pediatricians in 2004 issued a warning that autism was much more prevalent than previously thought.
Snyder and Hollander believe debates over autism's incidence are moot, because increased awareness of the condition is creating a demand for screening and other autism-related services in schools and health systems.
"Any way you look at it, it's had a big impact in terms of health service utilization, and a greater amount of resources for general medical and psychiatric care is going to take care of people with it," Hollander said.
Snyder is echoing those arguments in meetings with House members and senators. The ex-Hill aide says he first learned about the condition while working for Specter, who chaired the Senate Labor-HHS Appropriations Subcommittee when Republicans were in control of Congress. He soon developed a personal friendship with John Shestack, one of the founders of the advocacy group Cure Autism Now and the parent of an autistic child.
After leaving Specter's office, Snyder helped autism advocacy groups get language inserted in a children's health bill that directed NIH and the CDC to increase their research on autism and better measure its prevalence. But advocates remained displeased with what they believed was the government's scattershot response to the condition.
Since 2005, Autism Speaks has merged with three other advocacy groups, in part to centralize fundraising. Snyder led the new group's effort to persuade Congress to embrace a more coordinated approach.
The efforts bore fruit last December with passage of a law directing the government to develop a strategic plan for combating the condition. "Various groups have tried to fund priorities they consider important just through the earmark process," Snyder said. "We recognized this was too big for that, too important for that. There really needed to be a policy statute."
The new law has, in turn, encouraged members to sprinkle autism-related initiatives throughout the fiscal 2008 Labor-HHS spending bill, including $6.5 million of earmarks for autism research at local universities and research facilities. Though President Bush vetoed the bill in November on unrelated grounds, some of the earmarks are expected to survive in the omnibus.
Grinker, whose 16-year-old daughter has autism, remains ambivalent about the surge of interest in the condition, believing it could both lead to long-awaited breakthroughs and siphon money away from other, better-defined afflictions.
"As a father, I am excited that there is increased funding for autism. There hasn't been enough research and we don't know enough," he said. "As a scientist, as a professor, I'm not so sure. It doesn't seem to me that it's necessarily a good precedent for a government to pick illnesses."
FOR FURTHER READING:
Omnibus fiscal 2008 appropriations package, p. 3718; Labor-HHS bill ( HR 3043), CQ Weekly, p. 3402.
Source: CQ Weekly
The definitive source for news about Congress.
emphasis added
17 Dec 2007, 5:07 pm
Just not well connected enough to have a subscription to congressional quarterly... 
