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Still, Lee agreed to go back to White's office. The Lees saw White the next day, and he suggested that they get a consultation from Blackman at their own expense. Then, if they still wanted the surgery, Lee says, the doctor agreed to refer them.
"He kept saying, 'Well, if it was my daughter, I'd do this and this and this,'" Lee says. "And then he said, 'if you do all that, and you still want to go this way, I won't stand in your way.' He said he'd give me the referral."
David Lee thought the problem had been solved. On January 3, he even wrote a grateful letter to PacifiCare thanking them for finally listening to him. In that letter, he says the doctor and the administrators both promised to cover the surgery. PacifiCare never responded to the contentions in the letter one way or the other.
On January 29, David and Shawndra flew to Oakland, where Blackman pronounced her an excellent candidate for the surgery.
But the Lees still couldn't get a referral, even though Lee thought he'd done just what White had told him.
White confirms the conversation with Lee. He says he believes the more conventional posterior approach would be better for Shawndra, and he says he warned the Lees that Blackman's surgery is new and largely untested.
"I know what he does, and he has had good results, but as I told the father, he hasn't had anything published in a peer-reviewed article," says White. "With her case, I believe most people in Phoenix, and most people in Arizona, would say posterior is the way to go."
Still, White believes, in a major operation like this, the decision should be up to the family.
"I said if they want to pursue that, after reviewing all the information, and they still want to see this guy, they should go ahead," White says. "I think that, given the magnitude of the surgery, it has to be the family's choice, and they have to be confident in the physician and in all the treatment options. If, after all their data-gathering, if that's what they want to do, they're savvy enough people, and they want to make an intelligent decision . . . they should go ahead."
White adds that he spoke to a medical director at PacifiCare --he thinks it was Elk-- and told him the family should see Blackman and get an opinion. "Whether PacifiCare ever paid for it or not, I don't know," he says.
White also confirms that he never said anything about Shawndra's condition being urgent because he didn't think it was. He told Lee that they should do the surgery in the summer because of the long recovery period.
In January, when Diane Lee came to White's office to pick up Shawndra's x-rays after the trip to Oakland, she learned the doctor didn't go so far as to recommend Blackman's surgery. The Lees felt betrayed again.
The Lees didn't know, however, that it wasn't up to White. It was still up to PacifiCare.
On February 3, David and Shawndra appeared at a formal hearing at PacifiCare's offices. Before a roomful of PacifiCare executives and Dr. Ace Hodgin, a PacifiCare vice president, Shawndra timidly showed the curve of her spine. Then David detailed Blackman's procedure, down to the type of screws used in the surgery.
Only one person present asked Lee a question about how many surgeries Blackman has done. Hodgin--the only doctor in the room--said nothing the entire time. The appeals panel said it would be in touch.
Meanwhile, unknown to Lee, PacifiCare consulted with a doctor at the University of Arizona medical school, who called Blackman's procedure "risky" and "experimental."
But that doctor never spoke to Blackman or reviewed Shawndra Lee's case. In fact, the HMO's administrators say they never sent any medical records to that specialist. And PacifiCare never told the Lees about seeking outside advice.
Six days after the hearing, the HMO denied the appeal, repeating: "[T]he medically appropriate procedure for your daughter's condition is available in network with contracted providers."
PacifiCare then sent the case on to the Center for Health Dispute Resolution, an independent review agency in New York. Under state law, this is the final step in the appeals process.
But Lee had had enough. He requested that the appeal be stopped while he considered his options, but it was too late. Within days of receiving the case, CHDR issued a ruling in favor of PacifiCare; the appeals process was over. For once in the glacial process, a decision had been made quickly.
Only then did the Lees learn that PacifiCare considered Blackman's procedure "experimental," and under the terms of the Lees' insurance policy, the HMO was not obligated to cover experimental procedures.
It was an important designation. Under Arizona law, CHDR is required to decide cases on the basis of "medical necessity." Although neither the Lees nor Blackman had an opportunity to present their views, CHDR agreed with PacifiCare that Blackman's surgery was "experimental," and the HMO was offering the "gold standard for Shawndra's condition."
New Times called other experts on scoliosis, including Dr. William Shaughnessy of the Mayo Clinic in Rochester, Minnesota, and Dr. Peter Newton of San Diego, who pioneered removal of vertebrae through the chest while treating scoliosis (which is a part of Blackman's method).