Twisted System

Sitting on the couch, Shawndra Lee stretches, bored, as her mom talks about their HMO coverage. Her back cracks with a sound like a rifle shot. The loud snap is one of the only indications that her spine is bent 65 degrees out of shape. To get some idea of how severe that is, think of this: A 90-degree curve would have her torso almost parallel with the floor.

She doesn't whine or complain or regard herself as sick. Like a lot of 14-year-old girls, Shawndra plays basketball, practices her piano lessons, talks on the phone with her friends and plasters her wall with posters of the shaved-chested teen icons the Backstreet Boys. ("But I'm not really into them anymore," she insists.) About the only thing that separates her from most teenagers is the hump under her right shoulder, caused by scoliosis, a progressive disease of the spine that causes her back to grow in an s-shaped curve.

Shawndra and her parents, David and Diane Lee, have recently reached the end of a long journey through the twists and turns of the HMO system--a journey that's ended in defeat and frustration. They have exhausted their appeals against their health insurer, PacifiCare, in an effort to get a new treatment for Shawndra's condition, a surgery that they believe is less intrusive than the operation offered by PacifiCare.

The Lees say the $10 billion-a-year health-care giant has put them off, changed its story, stalled and even lied to them over the last seven months. They thought the operation they wanted might be covered by their HMO, only to find the HMO was busy covering itself. Even though PacifiCare's own doctors agreed the new surgery could work for the Lees, PacifiCare wouldn't buy it.

Now, the Lees have found that, under federal law, even if they took PacifiCare to court, all they might get is money for the operation, without attorneys' fees or punitive damages. As David Lee says, the cost of the lawsuit would be more than the surgery.

PacifiCare says it has always been willing to pay for the most appropriate treatment for Shawndra. It's the Lee family that has wasted time, PacifiCare says.

The Lees' struggle comes at a time when the Arizona Legislature and Congress are trying to hold insurers like PacifiCare accountable when they deny care. David Lee has also brought a complaint with the state medical board against PacifiCare's medical director for his actions in this case, the first citizen to do so.

The Lees now say they will pay as much as $50,000 themselves for Shawndra's surgery. It's something they could have done all along, and many parents may have made that decision long before the Lees did, once it was clear the insurance company was balking. Even though it means tens of thousands of dollars of their own cash, it's the only way they'll get the surgery they want.

But the Lees, like many other families, were newcomers to the complicated and confusing world of modern medicine. They'd never faced a major medical problem before. They weren't helped by the fact that PacifiCare and its doctors were giving them conflicting and incomplete information about Shawndra's condition. No one told them they needed to act soon or their daughter would get worse. And when they needed clear language and answers from PacifiCare, they got form letters and voice mail.

They thought by following the rules that they could convince PacifiCare to change its mind.

They were wrong.

Shawndra was first diagnosed with scoliosis at a school screening in May 1997, when she was 12. Many teens get the condition as they enter puberty; it's estimated to affect 2 percent of all adolescent females, and 1 percent of all males. Many schools, like Shawndra's, offer the free screenings to catch the disease early. While relatively painless for teens, as scoliosis progresses, the pain gets worse. The condition can also cause lung problems if allowed to continue.

Scoliosis causes the spine to twist into an s- or c-shaped curve. No one really knows why--some doctors believe hormones are the most likely cause, but a genetic explanation hasn't been ruled out.

To a teenage girl like Shawndra, however, the cause is less important than how the problem is going to be fixed.

In milder cases, scoliosis can be treated with a back brace, or corrected through surgery when the curve is more severe.

Shawndra's spine was about 45 degrees out of alignment when her school nurse caught it. At that already sharp angle, bracing wouldn't do much good. Shawndra would have to have surgery.

Complicating matters, Shawndra's father, David, doesn't live in Arizona. The family moved here about six years ago so that David could take a job with Honeywell. But he was laid off in 1996, and moved to Portland to work, commuting to see his wife and child. Although he works as an engineer for a flight-systems manufacturer now, he's an independent contractor and isn't covered under the company's health plan.

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Chris Farnsworth