Hanna Gremp, a 6-year-old from Modesto, Calif., is a gorgeous child. Big brown eyes. Long blond hair. Button nose.
But she was born with incomplete outer ears. She could hear with a hearing aid, but her ears looked deformed. She was an obvious candidate, it would seem, for reconstructive surgery.
The Gremps’ insurer paid for surgery to begin reconstructing her ears when Hanna was five. But it can take several operations to reconstruct deformed body parts, and after the first, the insurer left the state.
Last year, the night before Hanna was to have a second operation, the Gremps found out their new insurer had denied coverage, arguing the surgery was cosmetic. Only after their attorney fired off a letter to the insurer, Hanna’s mother Luann says, did the company agree to pay for the next surgery – but not until next month.
The family had wanted it done “by the time she started first grade,” her mom says. “She’ll miss a lot of first grade now.”
Michael Hatfield, a charming 19-year-old from Houston, now a sophomore at Emory University, tells an equally harrowing tale of having to fight for surgery that was once routinely covered.
Born with eyes too far apart and insufficient bone structure in his face, he had three operations to move his eyes closer and provide more support for his nose, with a bone from his rib. But last year, his insurer balked at the final planned surgery, claiming that constructing eye sockets and cheekbones was “not necessary to correct a functional disorder.”
The insurer caved in only after the Hatfields went public with their fight. The fact Mike could function with a deformed face was not the issue, his mother says: “Every single person deserves cheekbones and the eye sockets everybody else has.”
Though the battle for coverage for children’s reconstructive surgery has not yet hit Boston with a vengeance, it is gathering steam on the West Coast and moving East fast.
In fact, in Washington, D.C. last week, the American Society of Plastic and Reconstructive Surgeons kicked off a campaign to highlight what the surgeons say is an alarming tendency for health insurers to deny claims for reconstructive surgery, including for kids with birth defects like cleft lip and cleft palate, problems they have historically paid for.
Two to 3 percent of all kids are born with structural defects, says Dr. Edward Lammer, director of the craniofacial anomalies center at Children’s Hospital in Oakland. And one in every 700 is born with a cleft lip and palate, in which the upper lip and roof of the mouth fail to fuse.
Hard data on the number of denied claims for reconstructive surgery don’t exist, but 13 states have become concerned enough to pass laws addressing the issue. (In Massachusetts, a bill to mandate coverage for such children is languishing in committee.)
When the surgeons’ group recently surveyed its members, more than half the respondents said that in the last two years, they’d had pediatric patients who’d either been denied coverage or had encountered long delays in getting surgery coverage approved for craniofacial or other congenital anomalies.
And they’re not talking cosmetic surgery here, which the American Medical Association defines as surgery to reshape normal body structures to improve appearance and self-esteem. They’re talking reconstruction – surgery performed on abnormal body structures caused by congenital defects, developmental abnormalities, trauma, infection, tumors or disease.
“It’s a total disgrace for the insurance industry. How can they in good faith and conscience sleep at night – to say a child born without an ear doesn’t need an ear?” fumes Dr. Henry Kawamoto, a plastic surgeon in Santa Monica, Calif. Denial of claims is “an epidemic,” he says. “It was not a problem in California until about five years ago.”
Not surprisingly, health insurers take a different view.
“We’ve heard this before, this charge. But we’ve not seen any substantiation,” says Don White, spokesman for the American Association of Health Plans, the trade group for HMOs.
Richard Coorsh, spokesman for the Health Insurance Association of America, the trade association for many other insurers, says, “We don’t collect information on this.”
But surgeons say the problem is real, and, like other trends in health care economics, it’s working its way east from California.
It’s become “really rampant in the last year,” says Dr. John Persing, chief of plastic surgery at Yale University School of Medicine. “Prior to that, it was never really disputed that a child with a cleft lip and nasal deformity was benefitted by steps to try to bring a child to a more normal appearance. . .The kids wind up getting really stressed out.”
So far, the denial of claims in Boston does not appear to be widespread, say Dr. Michael Lewis, chief of plastic surgery at New England Medical Center, and Dr. John Mulliken, director of the craniofacial center at Children’s Hospital in Boston.
But it happens. One of Lewis’ patients, a 6-year-old Medford girl whose ears are very large and whose neck is “webbed” (meaning abnormal tissue grows from the ears to the shoulders) was recently denied coverage for plastic surgery because her insurer decided the operation was cosmetic. Her mother vows to keep fighting.
“This is a pretty obvious visual deformity that sets her aside from the average child,” says Lewis. “I have not had trouble in the past getting this approved.”
And while cynics might wonder whether the surgeons’ concern is sparked by worry about their own incomes, they say it’s not.
“We’re not fighting for these kids because we’re making large fees. We’d be financially much better off doing cosmetic surgery,” says Mulliken of Children’s.
On average, he says, repairing a cleft lip takes four hours, and the surgeon’s fee is $ 900. Cosmetic surgery on the upper and lower eyelids takes two hours, and the surgeon gets $ 4,000, paid by the patient. A 3-hour facelift gets the surgeon $ 6,000.
Dentistry and orthodontics, traditionally excluded from health care plans anyway, are a particular problem for kids with facial defects, adds Dr. Stephen Shusterman, dentist-in-chief at Children’s.
Reconstructing the bite or the teeth of a child with a cleft palate is “obviously very necessary,” he says. But insurers “usually reject it on the grounds that it’s dentistry,” leaving parents with dental bills of $ 10,000 to $ 15,000.
So what should you do if you’re told that surgery to correct a serious deformity in your child is not medically necessary?
“Don’t give up,” says Lammer of Oakland. “The squeaky wheel is necessary to make the system work properly. . .it’s all about money.”
Mike Hatfield agrees, adding that while he was confident and happy before his final surgery a year ago, his life now is “completely changed. Now I have the exact same opportunity that other kids going off to college have. It’s all about first impressions in this country.”
Women also often denied coverage
It’s not just kids with facial deformities who face hurdles in getting insurance coverage for reconstructive surgery. It’s women seeking breast reconstruction or reduction surgery, too.
While many women who have lost a breast to cancer seek reconstruction of that breast and reduction of the opposite breast to achieve a symmetrical appearance, some women without cancer also request reduction surgery because of the neck, shoulder, and back pain that can result from heavy breasts.
In a recent survey, 84 percent of members of the American Society of Plastic and Reconstructive Surgeons said that in a one-year as many as 10 of their patients had been denied coverage for breast reconstructive surgery. The surgeons’ group is still collecting data on reduction surgery.
Currently, 26 states have passed laws to ensure access to reconstructive surgery, including secondary surgeries if, as often happens, the first one doesn’t yield the desired result.
When surgeons are reconstructing a breast after mastectomy or reducing the opposite breast, the result “cannot always be perfect the first time,” says Dr. Sumner Slavin, a plastic surgeon at Beth Israel Deaconess Medical Center and immediate past president of the New England Society of Plastic Surgeons.
“The biggest problem is in obtaining coverage for breast reduction. Traditionally, this has been considered a ‘medically necesssary’ procedure. Now, insurers are insisting that a woman be no more than a certain percent above ideal body weight and that surgeons remove a lot of tissue – often 500 grams (almost a pound) from each breast to be reduced,” he says.
Removing 500 grams may be appropriate in a large woman, he says, but not in a small woman.
In late December, for instance, Tufts Health Plan sent letter to doctors clarifying what it said had long been its policy: it would pay for breast reduction surgery only when “medically necessary.” Because of longstanding complaints from doctors, the plan did agree to fund surgeries to remove slightly less than 500 grams from each breast in smaller women, says Dr. Lisa Letourneau, a medical director at Tufts.
In Massachusetts, the Senate Ways and Means committee is considering a bill (by Democratic Sen. Lois Pines of Newton) calling for insurers to pay the full cost of all stages of reconstruction surgery for women who have had mastectomies, including reduction surgery if necessary. Maryland, Maine, and Connecticut have passed similar laws.
A similar bill by Sen. Mark Montigny (D-New Bedford) is still before the insurance committee, a preliminary stage.