Girl's Leukemia Drains Insurance Coverage

By John Kelly
Wednesday, December 17, 2008

Robyn and Tim Major always thought they had pretty good health insurance. Then their youngest daughter, Madison, 3, got sick, and they realized how quickly you can go from pretty good insurance to no insurance at all.

As is the case with many insurance companies, Robyn's Blue Cross Blue Shield policy has a lifetime cap of $2 million. In the past six months -- starting on the July day when they noticed the tiniest of bruises near Maddie's hip -- they have accrued $1.6 million in medical bills.

"I think we've seen doctors in every department in this hospital," Robyn said recently at Children's National Medical Center, Maddie sitting on her father's knee.

That's a distinction the La Plata family would prefer not to have, of course. That tiny bruise was a sign of leukemia, and shortly after entering Children's to start chemotherapy, Maddie was beset by a maddening and dangerous set of side effects. At times, her setbacks seemed like an episode of "House."

There was something called tumor lysis syndrome, a complication of cancer therapy. There was disseminated intravascular coagulation, or DIC, when blood clots form where you don't want them to. There was a blood infection.

"She had all three of these things and the leukemia," said her mother. "Any one of them could have killed her."

That they didn't is a testament to the doctors and nurses at Children's. (A severe allergic reaction to an antibiotic was responsible for much of the problem.) Maddie was in the hospital for 80 days, two months of that in the pediatric intensive care unit. When she came out, her legs were so weak she could no longer walk. She was no longer potty trained, either. But she didn't suck her thumb anymore.

"So now here she is, walking and talking and eating and just as happy and healthy as you can be having gone through what she had gone through," said Robyn, who manages the accounting department at Passport Nissan and BMW. The insurance from that job has covered most of the bills.

Tim left his job when Maddie got sick so he could spend every minute at the hospital with her. She's finally at the point where he can look for work. His profession? He gave a grim chuckle. He's a GM-certified mechanic.

"Fortunately, we live in Maryland, and Maryland has an insurance policy we can buy after hers runs out," Robyn said. It's called MHIP, and though there will be a 30- to 45-day period between policies, when the Majors will have to pay all expenses out of pocket, when it kicks in, they'll pay $399 a month for Maddie. The policy will start ticking toward its own lifetime cap of $2 million.

Robyn said: "We kind of fall into that group of people where we make too much money for public assistance but not enough to cover the bills that she's going to have." They wonder whether they'll have to file for bankruptcy protection once this is all over.

As for Maddie, her cancer is in remission. She'll continue regular chemotherapy for the next two years. It's hard to say whether she comprehends the last six months. Not long ago, Maddie was at her grandmother's and spied a photo on the refrigerator of a little girl with lush brown hair down to her waist. Maddie compared that little girl with the one she had become, the one with just a few wispy strips of baby-fine hair.

"She kind of looked down, and she got really quiet," Robyn said. "How do you explain it to a child when you can't really understand it yourself?"

"They grow up overnight," said Maddie's oncologist, Anne Angiolillo, director of the leukemia and lymphoma program at Children's. "No adult could go through what these children go through."

Where the Money Goes

The gift you make to Children's goes to the hospital's uncompensated care fund. This money goes to make up the shortfall between what treatment costs and what Medicaid will pay. It also pays the bills of sick children who may not qualify for Medicaid.

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