Boy’s care tests policy’s limit [St. Louis Post-Dispatch]

Dec. 21--ST. LOUIS COUNTY -- Every three weeks, Brendan Staub gets another lifesaving treatment, and grows another $15,000 closer to running out of health insurance.

And he's only 14.

If the treatments continue at this pace, he will max out his health insurance policy in about two years.

Once that happens, his parents, Mark and Krista Staub of south St. Louis County, worry about affording the treatments, which have proven to be the only effective means of controlling their son's mysterious neurological disorder.

"When you're out of insurance at (a young age), what do you do for the rest of your life?" Krista Staub asked. "We make too much money to qualify for disability. That's the problem with the middle class. It'll take us under."

The Staubs could be the poster family for a recent study that found many in the middle class could be just one illness away from bankruptcy.

Health care expenses accounted for 62 percent of U.S. bankruptcies in 2007, according to a study published in the August edition of the American Journal of Medicine. The figure was 8 percent in 1981 and 46 percent in 2001.

Most of those families filing for bankruptcy in 2007, the study found, were well-educated, middle-class families. Three-fourths of them had health insurance, according to the researchers from Ohio University and Harvard University's Medical and Law schools.

Critics say the study is flawed, because it doesn't specify whether medical debt was the most important cause of bankruptcy among the families, whose debt may have piled up before they faced a medical crisis.

Dr. James Dalen, a cardiologist and dean emeritus for the College of Medicine at the University of Arizona, said the study illustrates the failures of the private health care system. But he acknowledges that no insurance program -- government-funded or not -- can support cases like Brendan's.

"The best insurance company in the world couldn't handle a case like this," said Dalen.

About 92 percent of those declaring medical bankruptcy in 2007 had medical debts of more than $5,000, according to the study. The rest had lost significant income because of illness, or had mortgaged a home to pay medical bills.

Each month, Brendan tallies $1,000 in medical costs not covered by insurance.

The Staubs credit a nonprofit foundation created by friends and family with saving them from having to find additional jobs, which would take them away from Brendan. He cannot be alone in case he has a seizure.

So far, the nonprofit, called Brendan's Buddies, has raised about $80,000. Most of that has gone for Brendan; about $3,000 has helped other children with neurological disorders.

"We're fortunate to have that foundation, but what about the people who don't have that?" Krista asked.

'AN AWKWARD FEELING'

From appearances, the Staubs don't seem to be a family facing an impending financial crisis.

Their four-bedroom house sits on a well-manicured cul-de-sac in the Mehlville School District.

Mark Staub is a machinist. Krista is a real estate agent. Both have bachelor's degrees.

Daughter Maddie, 13, travels for gymnastics competitions along with Krista, her coach.

There are gifts under the tree for their children.

That's what makes leaning on friends to plan fundraisers for the nonprofit foundation awkward.

Talk of whether they'll someday have to file for bankruptcy makes Krista Staub uneasy.

"I shy away from talking about it. It's an awkward feeling to be in this situation," she said.

Instead, she invests her energy in hope. Krista Staub believes doctors will diagnose her son before his insurance runs out.

She spends hours researching Brendan's symptoms on the Internet and corresponds with doctors worldwide, searching for a way to stop the seizures and strokes, as well as the hemorraging of her son's insurance plan.

That leaves little time to follow the health care reform debate in Washington.

But reform may bring relief for the Staubs, and families like them, said Robert Zirkelbach, spokesman for America's Health Insurance Plans, a national association representing nearly 1,300 health insurance providers.

The group supports eliminating lifetime limits on health insurance and capping out-of-pocket expenses -- both points are included in health reform bills before Congress, Zirkelbach said.

"Right now, many policies don't have any lifetime limits," Zirkelbach said. "These decisions are made by employers who choose how much coverage to purchase."

Brendan's plan had about a $1.5 million lifetime limit. About $400,000 remains. The Staubs expect to see that number drop by $60,000 this month after tests revealed more damage to Brendan's brain. Doctors at the Mayo Clinic amped up his $15,000 treatments to once a week for four weeks. And the visit to the Mayo Clinic in Minnesota is an out-of-network cost, which carries higher fees, Krista Staub said.

"Another issue that's not being addressed is why some health care services cost so much," Zirkelbach said. "Nobody is asking why it costs $15,000 for three weeks of treatment. The evidence is clear that increases in health insurance premiums are due to the rise in medical costs."

'A PUZZLE'

Brendan's neurological disorder began with his first seizure at age 8. Doctors pointed to calcifications on his brain as the cause.

Then, doctors found a brain tumor. Brendan had emergency surgery to remove it at age 9. But the seizures continued, sometimes as many as 50 a day.

Doctors tried to pinpoint the area of the brain that was triggering the seizures but found they came from all directions.

"He's a puzzle," said Dr. Jeff Leonard, a pediatric neurosurgeon at St. Louis Children's Hospital who performed Brendan's surgery.

Leonard also performed brain surgery on Brendan's sister, Maddie, in February 2008. Her tumor was a different type than her brother's, and she hasn't had any complications since. Leonard said operating on siblings for brain tumors is extremely rare.

"They're unusual and unlucky," he said of the Staubs.

In November 2006, Brendan suffered a stroke that sent him in and out of consciousness for three days. Since then, he has had four more episodes, which have affected his vision. The damage isn't permanent, but it comes and goes.

The Staubs had their family dog, a golden retriever named Buster, trained as a service dog. Buster sat at Brendan's feet in class and walked by his side during the schoolday when Brendan was in seventh grade. But Brendan would rather not use his dog and draw attention to his poor eyesight.

"He tries to hide it," Krista Staub said. "But I know when it's bad because he'll start to feel his way around the house."

The Staubs hope that once doctors find the cause of the illness, they also will find a less expensive treatment.

Intravenous immune globulin treatment, or IVIG, is typically used to treat patients with immune disorders. So far, it is the only thing that has helped control Brendan's seizures.

It takes eight to 24 hours to infuse the clear liquid containing antibodies, extracted from the plasma of more than 1,000 blood donors, into Brendan's body by IV lines -- one in each arm.

The lines flinch each time Brendan makes a move with a video game controller he plays to pass the time during the treatments at St. Louis Children's Hospital.

His mother remains at Brendan's side throughout the process. Once he had allergic reactions to the medication and nearly died in front of her.

Krista knows the impact of managing Brendan's disease will only grow worse for her son as he ages. She wonders how he will afford treatments in 10 years.

Doctors hope to eventually wean him from the infusions. But if the IVIG treatments continue to be necessary, Brendan's parents believe they have no choice but to continue them -- even if it brings financial ruin.

"If he passed on, I couldn't live without knowing I did everything possible to save his life," Krista said.

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