Parents Overcome the Odds — Twice
May 28, 2004
The odds of Chris and Rod Royer’s 12-year-old son getting the debilitating hip ailment known as Perthes disease were 1 in 5,000. But he did, and Chris knew things were bad in December 2001 when Ryan approached her as she sat in the stands watching him play basketball and said, “Mom, I can’t run.”
The Royers soon learned that the prognosis for Perthes, which causes deterioration of the thigh bone in the hip socket, was not good, especially for children in Ryan’s age group. Kids like Ryan typically had to hunker down, withstand the arthritic-like pain the disease brought, and wait for hip-replacement surgery as adults.
Then the Royers got lucky. Chris learned about a relatively unknown procedure known as “distraction” that was performed at Sinai Hospital of Baltimore by its originator, Dr. Paley, an outside-the-box orthopedic surgeon who reported 95% success rates.
The Royers, who live in Fullerton, asked their longtime health insurer Kaiser Permanente to pay for the surgery. The company refused, describing the procedure as “not medically necessary.” The Royers, seeing Ryan’s condition worsening to the point that pain sometimes left him in tears, signed up for it anyway. Last November, they took Ryan to Baltimore for the surgery, which cost about $50,000.
Once back in Orange County, Chris Royer took on Kaiser.
What were the chances of beating the company and its medical experts? I’d have put them roughly at 1 in 5,000.
“I felt we were deserted by Kaiser, and I just got this feeling that it was wrong,” she says. “I was raised Catholic; there’s right and wrong. This was wrong.”
Last week, the state Department of Managed Health Care, which acts as an arbitrator in such disputes, found that Kaiser should pay for the surgery. “I’m afraid to believe it,” Royer says of her victory. “I’m becoming such a skeptic.”
Kaiser spokesman Jim Anderson says the company accepts the decision. “The whole mechanism [of arbitration] is set up . just for this kind of case, where there’s a medical procedure that’s not well-known, well-documented and where there’s a dispute between doctors on whether it’s a good idea.”
Anderson says the “not medically necessary” language refers specifically to the distraction procedure, not to a belief that Ryan didn’t need some kind of treatment.
Paley says he has performed more than 50 “distraction” procedures in the last 15 years. In e-mail replies to my questions, Paley noted that conventional procedures for children older than 10 either have low success rates (33%) or can create deformities. “Therefore,” Paley wrote, “most people do no treatment in the older kids and most of these are then doomed to have a hip replacement at a young age.. With our treatment we can restore the [proper shape] of the hip and improve the motion to near-normal and restore the ball of the hip into the socket.”
That information was available to Kaiser officials.
Actually, it’s more eyebrow-raising than that.
“I have never had any other insurer turn us down for this procedure in 15 years,” Paley wrote. Kaiser affiliates in other states have covered the procedure, the first time in 1992, Paley noted.
Royer says she’s not in a “I Hate Kaiser” mode. “They were wrong, and this proves it,” she says of the arbitrator’s decision. “We tried to convince Kaiser this was the right thing to do, and they were not buying it one bit. They were saying it was not medically necessary.”
Ryan, now 15 and six months into post-operative therapy, is showing progress, Royer says. “If I tell you I know this is going to help him, 100%, I can’t honestly say that, because that’s the kind of disease it is,” she says. “But I also know that doing nothing would have left him crippled. He’s already better than he was.”
Dana Parsons can be reached at (714) 966-7821 or at dana. firstname.lastname@example.org.
Copyright 2004 Los Angeles Times