HEALTH CARE/Joan Retsinas

The Worth of a Nose

Do you really need a nose? Or an ear? What about a chin? Anatomists would say no. If you have appropriately-placed orifices, you can do fine without the structures themselves. And if you have the structures, bizarrely shaped ones -- like micro-ears or beak-like noses -- will do just as well as the conventional varieties. Bodily functions can co-exist with a variety of shapes, or no shapes at all.

Insurance executives agree. Each year thousands of children are born with facial deformities, or develop them from trauma, disease, or tumors. When their parents seek "reconstructive surgery" to create noses or ears or chins or lips, the insurers deny payment, explaining that because facial reconstruction will not strictly-speaking enhance bodily function, the surgery is "cosmetic," along with liposuction, tummy tucks, and face-lifts. And insurance plans rarely cover cosmetic surgery, even when "cosmetic" means creating a nose.

In a recent survey of 703 plastic surgeons, 54% said that their patients' parents had either been denied coverage, or had to hurdle "significant obstacles" in getting approval for reconstruction of facial deformities. The parents were not asking physicians to erase their children's wrinkles, but to repair their cleft palates, beaked noses, and shrunken ears -- anomalies that will not kill children, but will make their lives miserable.

The surprised parents have few choices. They can appeal the "no" to managed care reviewers. If the appeal fails, parents who can't afford the mega-fees either borrow to pay for the surgery, or resign their children to lives limned with scorn, embarrassment, and loneliness -- hardly the lives that insurers would want for their own children.

Generally parents struggle to arrange for the surgeries because the surgeries work. From bizarre configurations of distorted features, surgeons can construct ordinary faces. If surgeons start early, moreover, children have a chance to grow up with a normal appearance (and a chance at a normal childhood).

The problem is insurance. The "market" will not compel managed care plans to cover the repair of children's facial deformities. The number of children affected is not large, so the clamor from parents of children with cleft palates or Hajdu-Chevey Syndrome, for instance, is weak. And the surgery is costly. The clamor from businesses upset at rising premiums drowns out the clamor from anguished parents. Plus insurers fear a slippery slope: if they cover a "cosmetic" procedure that doesn't improve function, they may soon be covering face-lifts. Compassion doesn't compete with the bottom line.

Government, though, can propel the compassion that the market won't. Sen. John McCain, R-Ariz., has introduced the Treatment of Children's Deformities Act in the Senate; Rep. Sue Kelley, R-N.Y., has introduced it in the House. Briefly, this act would force insurers to pay for the reconstruction of deformed, or missing, noses, ears, chins, lips. The act covers only "abnormal" features, not the enhancement of "normal" features -- thus bypassing the slippery slope to face-lifts. At press briefings, parents presented their children. (In response, insurers did not present adults, born without the accoutrements of a standard face, to describe their happy childhoods.)

Fifteen states have passed similar mandates, with occasional loopholes. In some states a child's facial deformities can constitute a "pre-existing condition," thereby allowing an insurer to deny coverage. In other states, insurers must cover only the initial procedure, not the multi-stage follow-up surgeries. Or the legislation restricts coverage to children under age 5. Finally, state legislative mandates do not protect families in "self-insured" plans, which fall outside states' legislative reach.

Nevertheless, government -- often decried as slow, bureaucratic, out of touch with constituents, at odds with the workings of an efficient market -- has stepped in to champion the cause of these children, forcing insurers to look beyond the noses on their faces to see the very real children in front of them.

The act, first introduced in 1998, is now wending its way through lobbyists and committees. I wish it well.

Joan Retsinas is a sociologist who writes about health care in Providence, Rhode Island.

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