Under Covered?

You’d think a baby born with only one ear would be entitled to surgery that fixes the problem.

Forget about it.

In the confusing world of what some doctors call “mangled care,” the outer ear is often considered irrelevant.

Listen to Barbara Scarlett, office manager for Berkeley plastic surgeon Michael Cedars:

“I tell the insurer that this little guy was born minus an ear and we’re going to fix it. The insurer says he can hear without the ear, so why bother? I say he needs to look like the other kids. The insurer says if it’s about looks then it’s cosmetic surgery, and we don’t cover that,” Scarlett says.

That troubles her, and she is not alone.

“In my 14 years of practice, no one has ever denied payment for a child born without an external ear--until recently,” says Dr. John Reinisch, plastic and reconstructive surgeon at Childrens Hospital in Los Angeles. “It’s not just HMOs. It’s all kinds of health-care providers who may now deny it.”

Dr. Henry Kawamoto, a cranio-facial plastic and reconstructive surgeon at UCLA, explains: “It used to be that if you were born with something deforming, or were in an accident and had bad scars, the surgery performed to fix the problem was considered reconstructive surgery. Now, insurers of many kinds are calling it cosmetic surgery and refusing to pay for it.”

Kawamoto and other doctors say some companies totally avoid the controversy over whether a surgery is cosmetic or reconstructive: They have a clause that simply excludes all surgery not medically necessary to make the body function.

Insurers say there’s good reason for drawing a line between procedures that save lives and those that merely make lives more livable. There simply isn’t enough money to pay for everything, they say. And surgeries that enable a person to function are more important than those that will simply improve appearance.

Ridiculous, counter parents and doctors, who say children are disabled by having to live with deformities that embarrass and isolate them.

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From the most economical managed care plans to the priciest indemnity plans, resistance or refusal to pay is increasing all across the spectrum of California health providers, the experts say.

And it adds up to a virtual wipeout of coverage to repair the appearance of children whose looks are affected by illness, congenital abnormalities or trauma.

Of course, these rules apply to adults as well as children. But it is the little ones who may suffer most, many medical experts say.

Every year, babies are born with physical abnormalities that cause them to look, in the words of their doctors, “weird,” “deformed,” “lopsided,” even “hideous” and “monstrous.”

Skull deformities, benign tumors or vascular lesions that disfigure faces, mystery syndromes that cause children to look like miniature “elephant men,” development of breasts in young boys, missing pectoral muscles that cause chest deformities, cleft lips and palates are among the challenges facing a small group of plastic and reconstructive surgeons who specialize in helping children.

These doctors are able to open a baby’s misshapen skull and re-sculpt it; to work with tiny shards of bone so that facial features ruined in an accident look relatively normal. They are able to minimize facial scarring, and maximize stunted noses after cleft-palate surgery.

For years, such surgeries were routinely covered by insurers. It was understood that children suffer enormously when they look even slightly different than their peers, let alone grossly abnormal.

Not anymore. If a kid can hear without an external ear, or breathe through a deformed nose, or function despite a tumor that obliterates much of his or her face, then there is “no medical reason” to correct the problem, many insurers say.

Plenty of people apparently have complained. A California Managed Care Improvement Task Force, formed by Gov. Pete Wilson, has begun holding public hearings. Philip Romero, the director, says the group was created because 60% of insured Californians are covered by managed care plans, and a “simmering discontent” has become evident on the part of the public against those plans.

“Many people have accused the plans of making it unnecessarily difficult to get reimbursed for care to which they believe they are entitled,” he says.

People have also complained that “plans limit payment to an amount that allows them less treatment than their physicians believe is medically necessary,” he says. The panel will investigate and write a report by year’s end.

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In response to such complaints, Dr. Steve Raffin, a medical director of Foundation Health Care, says the “patients and doctors who are up in arms about all this have not read their policies. They are not living up to their covenant with the insurer, which states that they must know, understand and abide by the program. Some things may be medically necessary but outside of the program’s benefit structure,” he says. “If they read the policy, they will understand that.”

Raffin’s company would cover absence of an outer ear, he says, “because that has a major effect on appearance. Coverage for anything that has a major effect on appearance was put into the plan in June 1996,” he says.

Peter Lee, of the Center for Health Care Rights, a consumer advocacy organization, says the problem of cosmetic versus reconstructive surgery is an issue all sorts of insurers and health plans are wrestling with, because of everyone’s desire to keep costs down.

“Of course, from the insured person’s perspective, the dividing line can be meaningless if you don’t want your child to be taunted in the schoolyard because of his or her deformity.”

Lee says the picture has become so complicated that many doctors and patients don’t even realize they have been taken out of the loop when it comes to decision-making.

“Now there are often multiple groups who define what care is appropriate for specific situations,” he says. “Among those groups are the health plans, the doctors who form groups to give health care, and the employers who purchase the plans.”

In other words, if a patient wants treatment by a specialist, it could be the doctors in the medical group who deny the outside visit because they do not want money drained from their group. Or it could be that the employer has purchased a plan that does not include the desired treatment. Or it could be the plan itself is calling the shots on a case-by-case basis.

Often, Lee says, “the finger gets pointed at the health plan, which is really just providing a package of benefits negotiated with the purchaser, often the employer. It’s important to remember that health care through employment is not a gift. It is a part of compensation.”

Unfortunately, Lee adds, most parents in need of a job are in no position to turn one down simply because the health-are plan doesn’t seem to provide good enough care for their children.

Gary Hughes, executive vice president of the HMO Maxicare Health Plans, says, “It’s real simple. For us, coverage of problems such as a missing ear is dependent on cause. If the problem is caused by an accident, or it is congenital, then it is covered by us.” That is a state mandate for HMOs, he says.

Susan Whyte Simon of the HMO PacifiCare says the significant phrase at her firm is “ ‘medically necessary.’ And we define ‘medically necessary’ as surgery to restore functionality. In the case of cleft lip and palate, for example, which generally requires more than one surgery, we would focus on the functional aspect. We’ll pay until the surgery enables the child to eat and swallow appropriately.”

Cedars, the Berkeley reconstructive surgeon, says such policies ignore the fact that surgeons who operate on babies born with incompletely formed lips or the roof of the mouth, for example, are working with a deficiency of tissue because the baby is so small. As the child grows, the nose and/or mouth may be significantly deformed.

“But after that first surgery, some insurers take the stance that the function has been restored and additional surgeries are cosmetic. They do not care that without additional surgeries, the child will grow up and live with significant deformity.”

At Blue Cross of California, Dr. Lee Hartman is director of medical policy and review. “Reconstructive surgery is a covered benefit,” he says. “It may involve appearance, function or both. We have no philosophical opposition to doing multistage surgeries such as ear reconstruction. The potential sticking point is toward the end, when we are not taking something extremely abnormal and making it look more normal. There often reaches a point when we ask, at the last stage, ‘Will this last surgery make an appreciable difference either to the observer or the patient?’ If it does, we will cover it.”

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Tell all of the above to the 16-year-old in Orange County, whose mother says she is “close to suicidal” because of a deformity.

“One side of my daughter’s upper torso is deformed. Her chest is caved in, her breast misshapen, her body looks lopsided. She has severe emotional problems as a result.”

An implant to fill the void where the missing pectoral muscles should be would bring the girl closer to normal, the mother says, “and maybe she could have a regular life.” But the mother cannot afford the surgery, and the mother’s insurance plan denies it as “not medically necessary.”

In one recent instance, nurses and other staff members at Kawamoto’s Santa Monica office were so enraged at the insensitivity of an insurance company to a child’s deformity that they made a poster of the boy’s disfigured face and head. Across the top was printed: “You call this cosmetic?”

They never sent it, says Toni Ellis, a registered nurse in that office for 12 years, but the exercise helped ease some frustration.

“We’ve had four of these denials in the past two months,” she says. “They seem to be increasing.”

The mother of a patient talked to The Times, on condition that her name not be used.

Since he was 2, bony growths “that look like horns” have been growing out of her son’s face and head. At 6, Kawamoto opened the child’s skull and found bone growing on the inside, too, pressing on his brain. “We think that’s what caused his retardation.”

Kawamoto shaved off what he could, and saw the boy every few years until he was 17, shaving bone that continued to grow, “to keep my son as normal-looking as possible.”

The undiagnosed illness has caused deafness in one ear, bulging eyes, roughened “elephant-like” skin and continuing “hideous growths” on his face and head, the mother says.

He has borne a terrible burden, the mother says. Yet he has managed to graduate from high school, join a church group and recently got a job through a social service agency. At that point, he went off of his mother’s insurance at Bank of America and onto his employer’s health plan.

Now he has a bone growing out of the side of his nose. Surgeons in his new plan “will not touch him,” his mother says. So he requested permission to go back to Kawamoto, at which point he was notified that the surgery is cosmetic and not covered.

Then there’s the tot in West L.A. who was attacked by a neighbor’s dog a year ago, at age 2.

“He gouged her face, nearly tearing one side of it off,” the child’s mother says. After an emergency physician stitched her face, the wounds became infected and split open. “We were told the scars would be prominent for her whole life. So we did what any parent would do. We took her to a specialist, Dr. Reinisch at Childrens Hospital, who also said the damage was permanent but he could try to minimize it.

“Our insurance company informed the doctor’s office that it would be covered, since it was caused by an accident. So we went ahead. After the surgery, they said it had been cosmetic, and they haven’t paid a single bill.”

Many parents and medical personnel tell disturbing stories about the bureaucracy.

In some instances, the insurance company’s denial is swift and clear. But in most instances, they say, it takes months or years of exchanged photos, paperwork and documentation for doctors to prove to the insurer that the child needs surgery to lead a normal life. Then, sometimes at the last minute, after approval has been granted and the doctor, nurses, operating room and anesthetist are all reserved and on standby, the insurance company changes its mind and says it will not cover the procedure.

Doctors say this leads to a needless waste of money and time on everyone’s part.

“The insurers say they want to save money, that medical costs are too high. I agree with all that,” Kawamoto says. “But thousands of dollars are wasted each time we prepare to do a surgery that is canceled at the last minute. Not to mention the psychological effect on the family and the patient.”

Dr. Robert M. Goldwyn, clinical professor of surgery at Harvard Medical School and editor of the Plastic and Reconstructive Surgery journal, says, “Deans of the great universities of this country have been remarkably and embarrassingly silent and timid about speaking out concerning the decreasing standard of medical care for adults as well as children.

“I wonder if they fear they will lose federal funding. But there is a point at which you have to say ‘this is not right.’ ”

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The Results of Surgery

Ross Greenwood, 7, was born with Crouzon’s syndrome, a failure of the mid-face to develop normally. Ross was operated on after he developed life-threatening sleep apnea, due to constricted nasal passages.