Father takes his autism fight to Tallahassee

By Anna Scott

Dr. Gary is getting heated.

"Dirt bags!" he says, throwing up his arms in a conference room in his office. "It's a cover-up. They're killing kids."

Gary Kompothecras, who likes to be called Dr. Gary, is a chiropractor who acknowledges that, if you cross him, he can be a bulldog. He made himself a multi-millionaire building clinics to treat people hurt in car accidents and by creating the 1-800-ASK-GARY referral network. He is also one of the state's biggest political donors and a close friend of Gov. Charlie Crist.

Two of his children are autistic. Sarah Alice, 11, repeats back what other people say to her and still plays with a jack-in-the-box. Bronson, 12, is so severely delayed he spent years in therapy to learn the name of his favorite plaything, bottles.

Kompothecras (pronounced kom-PAHTH-uh-kras) believes their disorder was caused by an ingredient in vaccines, mercury-based thimerosal, that they received as infants.

"Dirt bags" is one of the nicer names he has for public health officials who disagree.

This legislative session Kompothecras wants lawmakers to pass a law preventing any vaccines with more than a tiny amount of thimerosal from being given in Florida, creating what would be the nation's strictest vaccine law.

Pediatricians say the legislation, which essentially amounts to a ban on the preservative, is rooted in bad science and will put children and the elderly at risk for deadly flu viruses. The one shot containing a substantial amount of thimerosal is the flu vaccine, and if the preservative is restricted there could be a shortage, medical experts warn.

But Kompothecras is relentless. He promises to leverage every political favor and every dollar he can to get the law passed.

"If I can do this, my son won't go down for nothing," Kompothecras said. "You know how many lives we're going to save? This is going to be bigger than tobacco."

Dr. Gary's BlackBerry buzzes with calls from people who can make it happen. First is Sen. Jeremy Ring, who is sponsoring a related bill that would force doctors to talk to parents about the dangers of vaccines. Next, is Rep. Kevin Ambler, a Tampa attorney who is chairman of one powerful health committee and vice chairman of another that will review the proposed vaccine law.

Last summer, Kompothecras donated $9,000 to Ambler's campaign. To the lawmaker carrying the thimerosal bill, Sen. Mike Bennett of Bradenton, Kompothecras donated $8,500. Even though he has only been active in politics for a few years, Kompothecras understands that money lays the track for influence.

"I'm driving the train on this," Kompothecras said. "I'm the rain-maker."

Working the system

Kompothecras, 48, believes he can do what autism advocates have been trying to accomplish for almost a decade. He will have to convince state legislators to pass a bill that the state's own medical experts unanimously oppose. But he is undaunted. In a lifetime of successes, failure feels like the most distant of possibilities.

When he was growing up on Long Island, Kompothecras' bed was an old couch at his grandparents house. He put himself through the University of South Florida, "dated all the women in the class," and became a stockbroker in Sarasota, with a BMW, by age 23.

He started his own shipping business and went bankrupt at 30. Five years later, he was a chiropractor with a single clinic, paying off a loan guaranteed by his father-in-law.

By 40, he had figured out how to build a lucrative chain of clinics, tapping into a controversial state law that requires car insurers to pay up to $10,000 for auto accident treatments that health insurers such as Medicaid will not cover, including massage and chiropractic work.

He quadrupled his client base by launching 1-800-ASK-GARY, a hot line that refers accident victims to one of his clinics and a lawyer. The cable advertising blitz for the call line was so aggressive that lawyers who participated were punished by the Florida Bar Association.

With his earnings, Kompothecras began attending political fundraisers.

He shot from political no-name to one of Gov. Crist's best supporters, helping throw a glitzy fundraiser for him at the Sarasota Ritz-Carlton, and renting out his private jet for Crist's campaign. He made himself the largest individual donor to the governor's property tax cut plan, Amendment 1. He donated $114,000 to get it passed, putting him second only to Florida Power and Light and the Florida Association of Mortgage Brokers.

Crist appointed Kompothecras to his Autism Task Force, which was formed last year when lawmakers passed legislation requiring insurers to pay for therapy for autistic children. While Kompothecras was not the point person behind that legislation, he was one of the parents lobbying for it and stood with Crist the day the law was signed.

Crist credits Kompothecras with deepening his understanding of the problems for families with autistic children. "We talk on the phone often," Crist said.

"Dr. Gary, his level of focus, passion and tenacity is remarkable and it was absolutely indispensable in bringing the level of concern and awareness to me."

Controversial theory

At 18 months of age, Kompothecras' middle child, Bronson, became listless and stopped making eye contact. "The lights were out," Kompothecras recalled. "He lost his mind. He wasn't there."

His younger daughter, Sarah Alice, would soon begin showing developmental problems and doctors would diagnose her with autism, too.

Kompothecras and his wife traveled the country to doctors who offered unproven but promising-sounding treatments. Their children tried diets without wheat or milk and treatments to remove heavy metals from their bodies. Other parents of autistic children have tried treating their children by putting them in high-pressure oxygen chambers or dosing them with vitamins.

One of the most difficult things about autism is that doctors do not know what causes it or how to treat it, although they do suspect there is a strong genetic component. The disorder was first diagnosed in the 1940s in children who could not communicate and seemed to be in a private world. Now it includes a spectrum of different developmental and behavioral problems. An estimated one in 150 children is autistic.

Children with the disorder flap their arms, pull their ears, rock back and forth. Bronson Kompothecras clutches a plastic bottle in each hand and presses the two together. Because he used to ransack the house looking for them, his parents now keep a bin of empty shampoo and lotion bottles in the kitchen.

The theory that vaccines cause autism was put forward in 1998, by a British doctor who reported that children who were given the MMR vaccine to protect against measles, mumps and rubella became autistic and showed signs around the same time they received the shots. The study involved only 12 children and was never able to be repeated with the same results. Doctors denounced it.

The debate erupted again in 1999 in the United States, when it became known that health officials for the first time had totaled the cumulative amount of the preservative thimerosal in childhood vaccines.

As a precaution the American Academy of Pediatrics and the Centers for Disease Control asked drug manufactures to stop using the preservative. Parent groups asserted thimerosal caused autism and thousands applied to the National Vaccine Injury Compensation Program, a federal fund that pays for injuries from vaccines.

Studies in the past decade have proven that a link between thimerosal and autism is unlikely, according to all the major public health groups. The American Academy of Pediatrics, the National Institutes of Health, the Food and Drug Administration, the World Health Organization and the Centers for Disease Control say it is not the cause.

And, in its first major ruling, on Thursday a federal vaccine court decided against compensating families who claimed their children's autism was from vaccines.

But the debate has not died. Parents promised to appeal the decision. Kompothecras circulated a statement from Dr. Mark Geier, one of a few doctors who believe thimerosal causes autism, saying that asking a government court was like "asking the fox if he had seen any chickens."

"Mainstream science thought the world was flat at one time," Kompothecras said.

The evidence has also split autism advocacy groups. The executive director of the largest, Autism Speaks, recently stepped down in protest of the group's willingness to continue researching a link to vaccines.

Initially, Beth Kompothecras did not believe vaccines caused her children to become autistic. But gradually it became the only answer that made sense to her -- Bronson got nine shots in one day and began showing developmental problems shortly afterward.

Now she believes God has chosen their family to work to make vaccines safe.

"Sometimes I wonder why this happened to our kids but then I say maybe it had to, because they have a dad who knows how to speak up and do something," she said. "It helps me accept it a little more."

Jeff Brosco, a pediatrician at the University of Miami who sits on the Governor's Autism Task Force, along with Kompothecras, said he would be willing to ban thimerosal just to end the argument and move on if it did not put children at risk.

"If you have a family with autism and there was a link in time to when the child was given a vaccine, for that family, that's reality," Brosco said. "To hear that story is emotionally powerful. You hear eggheads like me say, 'But there's no epidemiological link,' and the story wins out.

"But if the only vaccine available in my office is one with thimerosal and I have a baby who could get the flu and it would be deadly, because the flu can be deadly to babies, and I have to say, 'Sorry, the state is telling me we can't use a medicine we all believe is safe,' we're putting that child at risk," Brosco said.

Since 2001 thimerosal has been removed from all childhood vaccines, except for trace amounts and except in multi-dose versions of the flu vaccine, where it is used as a preservative.

Manufacturers make single-dose syringes, without thimerosal, but they are more expensive and more cumbersome to store. Plus the vaccine has to be reformulated every year and ordered months in advance, so even now a shortage can occur simply because the flu season was worse than anticipated and more people want shots.

In seven other states where the ingredient has been restricted, an emergency provision has allowed thimerosal to be used if that was the only vaccine available. Kompothecras said he plans to vigorously oppose any attempts to tack a similar provision to the proposed Florida law.

Big donations, big ambitions

Working for a vaccine law is just the beginning for Kompothecras. He wants to commission a study using the state's Medicaid database looking at children who received thimerosal-containing vaccines and at how many became autistic. He also wants parents of autistic children to be exempt from height restrictions on yard fences, to keep children from running away. Kompothecras wired the backyard fence at his own house to sound an alarm when his son tried to cross it.

"The crux of the matter is, if you help politicians get elected, they will listen to you," he said.

To get around campaign finance laws that limit donations to $500 per person, he donates through at least 16 of his businesses. He estimates he has donated hundreds of thousands to politicians and their causes, and raised millions more.

Sen. Bennett said money is not the reason he is carrying the thimerosal bill, but acknowledged that it was Kompothecras's idea: "To be honest, I love Gary, love his wife and kids, and if it's going to make it better for them, I'm on board."

Kompothecras said his personal lawyer helped Bennett write the bill.

Representative Ambler, the chairman of the health care appropriations committee, said he has not yet decided whether to back Kompothecras' bill, although he has asked Kompothecras to help raise more money in Sarasota and Bradenton.

"I know the bill is very controversial," Ambler said. "But there is a historical precedent for these things, where the government tells you it's fine, there's not a problem, but the government turns out to be wrong. Just look at tobacco."

When Kompothecras picks up the phone in his office for the second time, it is Ambler. "Representative Ambler, I'm talking to a reporter right now about this mercury, this autism bill you're going to help me with," Kompothecras says into the phone. "Yes ... yes ... I'll help you. I don't know about finance chair. That's a big job ... You know I'm there ... I'm your man. OK, buddy."

Kompothecras hangs up and gestures with the BlackBerry, bluntly explaining the purpose of his donations.

"I've got these guys calling me, don't I?"

Source: http://www.heraldtribune.com/article...-1/NEWSSITEMAP

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