October 28, 2006

Activists Putting Heat on Barton

Activists putting heat on Barton
Autism, breast cancer bills on hold; he says agency needs overhaul
08:02 AM CDT on Saturday, October 28, 2006
By SUDEEP REDDY and RANDY LEE LOFTIS / The Dallas Morning News

Heading one of Congress' most powerful committees, Rep. Joe Barton has become the No. 1 enemy of groups pushing for more research into two of the nation's most prevalent diseases – autism and breast cancer.

The Ennis Republican is blocking two bills that have widespread support on Capitol Hill while he tries to overhaul the federal agency that directs most disease research.

The result has been a torrent of attacks from advocacy groups, families and others fighting for research dollars, including talk show host Don Imus. They're furious at the 11-term congressman, saying he is thwarting efforts to find cures. Others have raised questions about whether his opposition is tied to aspects of the research that would look into environmental issues.

"Why would he do this? Why would he throw his body in front of this train?" asked Elizabeth Emken, a board member of Cure Autism Now whose 14-year-old son has the mysterious neurobiological disorder. "Autism is a national emergency and needs immediate attention."

Mr. Barton, chairman of the far-reaching House Energy and Commerce Committee, says he wants to remove politics from decisions about which diseases get federal research funds.

"I'm opposed to continuing to do business the old-fashioned way, where whichever group can create the most pressure is the group that's taken care of," he said. "We have lots of health areas that need to be addressed in a comprehensive and fair way."

Each of the blocked bills would tag money for research into possible environmental causes of the disorders – $180 million over six years for breast cancer; $45 million over five years for autism, part of a $1 billion package for autism research and programs.

While Mr. Barton has frequently clashed with environmentalists over topics ranging from air pollution to global warming, he said his opposition has nothing to do with those environmental components. Such decisions should be left to scientists, he said.

But his Democratic opponent, David Harris, is raising the environmental issue in their congressional race. He suggested that Mr. Barton is blocking the bill because of the environmental component.

"It just doesn't sit well with me," Mr. Harris said, that "you don't want environmental considerations in the bill because people that support your campaign are major polluters of the environment."

Mr. Barton, he said, is "trying to push more coal power plants into the district, create more pollution and more mercury. It's just one big vicious circle."

The 6th District includes portions of southern Tarrant County and sprawls southward.

Both the autism and breast cancer bills have a majority of House members co-sponsoring them – a sign that they would pass overwhelmingly if released from Mr. Barton's committee.

Parents of autistic children are appealing to House Speaker Dennis Hastert to overrule Mr. Barton. They plan to demonstrate Monday in Richardson, where Mr. Hastert will be attending a fundraiser.

Proponents of the research bills say they find Mr. Barton's opposition incomprehensible.

"Here's a group that did everything right, had an overwhelming majority of support in the Senate and the House," said Fran Visco, president of the National Breast Cancer Coalition. "All the research and analysis gets shut out by Joe Barton. It's absolutely infuriating. What a horrible civics lesson to give to the public."

Mr. Barton said majority support doesn't guarantee that any bill even gets a hearing. But he's heard the concerns of parents and others and said he's willing to work toward a solution.

"This idea that I've somehow double-crossed people is just flat wrong," he said. "I am on the side of the parents and grandparents of autistic children. I want to find a way to treat their children, to prevent the disease or alleviate it."

Taking on autism

The autism fight has drawn the most national attention, amid worries over an explosion in the number of autistic children.

In the 1980s, doctors found one of the developmental problems known collectively as autism spectrum disorders in 4 to 5 of every 10,000 U.S. children. In the 1990s, the rate had jumped to 30 to 60 per 10,000.

The increase could be due to more awareness, better and earlier diagnosis and a broader definition of autism. However, the figures are sobering: The Centers for Disease Control and Prevention says as many as 1 in 166 American kids has an autistic disorder.

Mike Bernoski, an Arlington resident who lives in Mr. Barton's district, learned last summer that his then-2-year-old son, Nathan, has autism. The family had known something was wrong since Nathan was 15 months old.

"He spent over 50 percent of every waking moment in a fit, crying," Mr. Bernoski said. "He was apathetic. There was no connection. He didn't look at you."

Extensive behavioral treatment – at a cost of more than $60,000 a year – turned Nathan around. He's started showing a personality, talking, laughing and hugging people, said Mr. Bernoski, who is racking up debt to pay for the therapy.

"It is unbelievable. You would not recognize the two kids," Mr. Bernoski said. "That's not the case for everybody. They have to watch their kids bang their heads against the wall because they don't have enough money. Imagine having to make that choice.

"All any autistic family wants, all any doctor wants, all the millions of people who work with autistic kids want is to find out what causes it and how to stop it."

For Mr. Bernoski, the battle over research funding has become a political motivator. He says he voted for Mr. Barton in the last election as part of his straight-ticket ballot. Next month, he said, he'll vote for Mr. Harris.

Mr. Harris said his campaign has been flooded with supporters since the autism issue drew national attention. Checks are flowing in; one of the first was $2,100 from a New York man, he said.

"I believe if we can spend $8 billion a month in Iraq, we can certainly allocate $1 billion for autism research and support networks for families of autistic children," said Mr. Harris, an Iraq war veteran.

Even if Mr. Barton retains his seat but Democrats take over the House on Nov. 7, he would be out of the energy and commerce chairman's job.

Mercury seen as culprit

Much of the research into what causes autism has been devoted to finding genetic links and environmental agents – whether drugs, pollution or other factors. A prime suspect is mercury, a toxic metal that is a powerful nerve poison.

Some researchers believe they've found mercury's fingerprints on autistic children. In one study, they tested the urine of children given drugs to force toxins out of their bodies. Autistic children excreted three times as much mercury as children without autism.

Many parents suspect thimerosal, a mercury-containing preservative once widely used in vaccines, as an autism trigger. But the research remains in dispute.

Coal-burning power plants also emit mercury. Researchers found in 2004 that school districts in Texas counties with higher industrial mercury emissions, mostly from coal power plants, had a higher percentage of children in special-education classes, especially for autism. Studies elsewhere also have linked mercury in the local environment with local autism rates. Until more detailed studies are done, however, scientists can't confirm the link.

Texas ranked first nationwide in air emissions of mercury reported to the Environmental Protection Agency – 15,147 pounds in 2004, the latest year available. New coal-burning plants proposed in Texas would increase that by nearly one-third, companies' permit requests show.

Political action committees and individuals associated with Dallas-based TXU, which proposes 11 of the 16 new coal-burning units, are Mr. Barton's third-biggest campaign donors this year, providing $24,000, according to the Center for Responsive Politics.

Mr. Barton said he's "never had a policy discussion with anybody" about the environmental focus in the two research bills. His objective, he said, is to leave decisions about disease research programs for scientists to make in an "open, transparent, merit-based, comprehensive system."

Targeting agency

In the three years he's been chairman of the Energy and Commerce Committee, Mr. Barton has been working to overhaul the National Institutes of Health, a massive agency that directs most federal disease research.

Currently, some funding decisions are made by agency officials, while others are required through legislation. And Congress has mandated dozens of projects over a half-century, often without linking them to existing work. As a result, Mr. Barton said, agency scientists don't talk to one another enough and sometimes unknowingly duplicate another's work.

"I'm really committed to transforming the way we do health research in the United States," Mr. Barton said.

His reform act passed the House last month by a 414-2 vote but needs Senate action. It would give the director, who is appointed by the president, more authority in allocating money for research. And it would establish a common fund for research to cure numerous diseases.

Congress could still consider legislation for disease-specific research programs, but Mr. Barton cautions that letting groups fight one another for funding just won't work.

"If you take that approach you end up not being able to do anything, because there's just not enough money. I don't think it's possible to do just a disease-specific bill for anybody – not just for autism but for anybody."

Critics take issue with the hands-off approach, saying lawmakers should step in when public health is at stake.

"Of course we should be telling NIH what to do," said Ms. Visco of the breast cancer group. "Congress' role is oversight. ... That is the kind of thing that should come from the taxpayers and that should come from the public."

Not holding back

Many autism groups support Mr. Barton's reform legislation, saying the structure of the National Institutes of Health should be improved. But they say a separate autism bill is vital as well.

Parents of autistic children are flooding Mr. Barton's office with calls. And the lobbying involves numerous public figures. Mr. Barton is under a constant assault from Mr. Imus, whose wife advocates for autism research. He has used his morning radio program to label Mr. Barton a "Republican dirt bag," "lying skunk," "awful human being" and numerous other terms in a bid to pressure the congressman.

Mr. Barton said the star-power protests are wearing thin. "I'm a little tired of big-time celebrities and big-time PR firms being paid lots of money and calling me names," he said.

But facing continued pressure, Mr. Barton said he wants to work with the Senate next month to find a compromise. He's offered a proposal that would incorporate many provisions of the autism legislation – including increased funding – and also overhaul the National Institutes of Health.

Critics say his proposal leaves out key pieces, including the environmental research program. They plan to continue their push to move the research bills through Congress.


UPDATE: From Shelly Reynolds at Unlocking Autism

The following letter was submitted to the Editor of the Dallas Morning News. We encourage you to visit their website and post your opinion after reading the article at www.dallasnews.com http://www.dallasnews.com/cgi-bin/lettertoed.cgi?nl

Happy Writing!
Unlocking Autism

Thank for publishing such a well written article regarding Congressman Joe Barton and the Combating Autism Act.

With autism striking nearly one percent of the Nation's children and affecting one out of every sixty eight families today, it is unfathomable to me that Congressman Barton could possibly allow the burden of the reform of the National Institutes of Health to rest squarely on the shoulders of these children.

While I wholeheartedly agree with him that the NIH could use an overhaul, I vehemently disagree that all progress should come to a screeching halt in the meantime until that day arrives - whether those research dollars are spent on my own child with autism, breast cancer research or any other disease. After all, ask any American citizen today and they will most likely express that there are a variety of things that should be "overhauled" with regard the Congress of the United States - and yet, as citizens, we continue to elect Congressmen, pay their six figure salaries with our taxes and send them up to Washington to work for an average of 100 days a year.

We don't just arrest the "progress" of Congress because of existing procedures that need improvement.

Children with autism have long been swept under the "research funding" rug, regardless of the exponential growth in the number of children diagnosed each year. Our community will not allow that to continue. Our community is painfully aware that a Category 5 autism hurricane is gathering strength and bearing down on the shores of our country. If our leaders cannot muster the intestinal fortitude to stand in the gap and do what is right for these children, then it is our duty as parents, and American citizens, to lead them.

We are their constituents. In our community alone, there are 10 Million of us nationwide that can affect elections, and will. We have the memories of elephants. Our grass roots are growing and we are politically active.

Our leaders work for us. They can be fired. How often they forget that.

With kindest regards,
Shelley Hendrix Reynolds
Unlocking Autism

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