Twisted System

A Phoenix family stumbles through the tangled bureaucracy of modern medical care

Blackman, reached at Children's Hospital in Oakland, admits his procedure is new, and only a few other doctors in the country are doing it to correct spinal curves. The biggest risk involved in his procedure is that the surgeon has to work around one lung to get at the spine.

But Blackman argues that's better than leaving a "gruesome scar on a 13- or 14-year-old," and that the surgery is much less taxing for the patient. In the posterior approach, the patient will lose about a liter of blood. Using Blackman's method,the patient may lose less than a third of that, he says.

"We have not had to do [blood] transfusions" in any of the 50 cases so far, Blackman says. "There's much less loss of blood; the patients are usually off narcotics in five to seven days. Many even get out of bed voluntarily the next day."

Blackman says his procedure costs about the same as the posterior approach--about $20,000. (Recovery time in the hospital can up the bill by as much as another $30,000.) Since the recovery time for Blackman's procedure is shorter, he believes his method might even be cheaper for the insurance companies. At least two HMOs, Kaiser and Blue Cross/Blue Shield, have already covered operations.

Blackman, who has examined Shawndra and reviewed her medical history, says she is a "perfect candidate" for the surgery.

Shawndra was excited about the idea, her father recalls. "Her first response was, 'When can we do this?'" he says.

Shawndra says it was a weight off her mind: "I was sort of relieved. I wasn't as scared anymore."

The Lees went back to McLean in December 1997, about three months after Shawndra first saw him. David was home for the holidays, and wanted to discuss what he'd learned about Blackman's procedure and see if McLean would okay it.

McLean refused to refer Shawndra outside the PacifiCare network. According to his medical notes, McLean didn't think the new procedure "was really indicated, and it could all be done from posterior due to the flexibility of the curve."

Without a referral, the Lees couldn't go outside the network to see Blackman, at least not and have it paid for by their insurance. But they still wanted to look into the new surgery option. They say they asked McLean what to do.

David Lee says the doctor never spoke up about the curve increasing in size. "He never told me it was getting worse," Lee insists. "In fact, I thought it had stabilized."

And, Lee says, McLean made it seem like an open question. McLean wouldn't give the referral, but he didn't say the other operation was out of the question, either. He said they should think about their options and get back with him.

McLean's notes conclude, "He [Lee] will think about his options at this point and whether they would like to proceed on with surgery or the type of procedure they would like to have done." He suggested a follow-up appointment in three months.

So Lee began an e-mail correspondence with Blackman in June 1998, six months after meeting with McLean. About the same time, he began trying to find out if PacifiCare would cover Blackman's new method.

The Lees thought they had plenty of time. They didn't realize Shawndra's spine was getting more crooked as she grew. And they also thought there was a chance they could see Dr. Blackman and have it covered by PacifiCare because McLean had told them it was okay to explore their options. They didn't realize that McLean was their only option under the terms of their PacifiCare contract.

They didn't know they were already a long way down the wrong path.

In July 1998, Lee wrote his first letter to PacifiCare. It wasn't really a formal appeal. Even though McLean wouldn't give him a referral to Blackman, Lee had not been officially denied the preferred treatment by PacifiCare.

Lee asked PacifiCare how his daughter could see Blackman.
"I don't believe I put it in pointing-fingers terms," he says, "but I wanted to know how to do this. I wanted to ask for a referral."

He got back a packet in the mail that didn't answer his questions, but outlined the appeals process.

Meanwhile, Diane Lee says she called her primary care physician repeatedly. Only after badgering Willcox for a referral, the Lees say, did they get sent back to see McLean.

Willcox, through her hospital's public-relations department, declined to talk to New Times.

PacifiCare says it doesn't have any record of contact from the Lees until August--eight months after the initial appointment with McLean--and cannot comment on what Willcox might have done.

And when Shawndra saw McLean again in August 1998, his answer was the same: no referral to Blackman.

But again, he didn't voice any objections to the surgery. He wrote in his medical notes, "With curves this size, this [surgery from the front] is certainly an option for them. In any event, they need to have surgical correction for this curve."

David Lee says McLean still didn't tell him the need for surgery was urgent. And, more to the point, he wanted to get the treatment he and his family preferred.

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