Abbott is one of the 16 survivors, nine of them women, who lost a limb in the April attack. At 38, she wants not just a mechanical prosthesis, but a natural-looking silicone “skin” covering for it. “It’s very expensive if you’re someone who wants that covering, and most insurance companies won’t cover it because it’s considered cosmetic. I want to be able to have a leg that’s as similar to my real leg as possible,” says Abbott, who works in human resources. “But most of the female amputees I have met don’t have these cosmetic covers because of the cost,” which starts at about $15,000.
My son and I happened to be at the Red Sox game the afternoon Abbott threw out the first pitch, right after being discharged from Spaulding Rehabilitation Hospital. She was surrounded by people in “Heather Strong” t-shirts that day, and all of Fenway would have hugged her if they could.
Insurance companies have promised that all survivors of the bombings will have all the care they need, period. But is she wrong to worry about what happens when the shock of the bombings wears off, and the story isn’t in the headlines any more?
Her friend Roseann Sdoia, who lost a leg above the knee when she ran straight into the bag with the bomb in it, spells out the concern: “I have Blue Cross and Blue Shield and I haven’t received a bill.” On the contrary, she says, “they’re calling me once a week asking me how I’m doing. But what about in five years, when I’m not a Boston Marathon victim” featured in People magazine, or interviewed by Brian Williams on NBC?
Sdoia thought she was going to die when she saw how much blood she was losing after the explosion ripped into her leg, and closed her eyes “to protect myself.” Knowing when to squeeze your eyes shut and when to keep them open is something every seriously ill or injured person is constantly readjusting as necessary.
“It’s a temporary situation,” Sdoia tells me at one point, “because I’ll be back to what I do normally; it’s a three-month situation.” But at other moments, she’s completely hard-eyed, and when I euphemistically refer to her “situation,” says, “You mean, that I’m an amputee?”
Calling around to various insurance experts is certainly eye-opening for me: One tells me that not only does he not know the standard coverage for prosthetics, but that “no one does,” because there is no such thing, for mechanical limbs and much else.
Right now, what’s covered varies enormously by state and whether it’s an individual or group plan. Even for large employers, what’s covered essentially depends on how much the company wants to spend. And since insurers can sell anything as long as they put it in writing, it’s the Wild West out there.
The Affordable Care Act is supposed to establish a floor on national standards, and requires that coverage not discriminate, either; it can’t be based on age, expected length or quality of life. But the core package of “essential health benefits” is tied to each state’s benchmark, so there will still be some differences, and maybe some wiggle room.
Meanwhile, Tim Sullivan, a spokesman for Spaulding Rehabilitation Hospital, where all but one of the amputees was treated, says insurers have been clear: “For this particular group of patients, what they told us is, ‘Do what’s necessary for these folks, and figure out the mechanics later.’ Patients who lose a limb in, say, a car accident, however, are another matter: “It’s usual to have some push and pull over what’s cosmetic.”
And for prosthetics, which have to be replaced every few years, “a lot of insurance companies only cover around $4,000 a year — about the cost of a foot,” says Rep. Tammy Duckworth,(D-Ill.) who lost both legs while serving in the military in 2004. If that, since some prosthetics can run as much as $85,000. “I was the first female double amputee back at Walter Reed” from Iraq, “and when I said I had a size 8 foot, I got a men’s size 8″ prosthetic, and initially “was clod-hopping around. A lot of amputees,” — though not, of course, veterans — “have to pay for limbs out of their own pockets.”
That’s especially hard on women, Sdoia argues: For some “guys, it’s almost a badge of honor to be seen with a mechanical leg, but for a woman, it’s really the femininity of it. It comes down to, not even your sexuality, but for a female, your identity.”
This Monday, the 45-year-old real estate manager took her first steps on her first new leg in front of the reporters and photographers who showed up to document the milestone — not unlike a bunch of proud parents filming their son or daughter’s first steps, really. We also got to see an example of the kind of silicone skin covering she’ll be getting — complete with veins, freckles, and a French pedicure, if she wants that. It’s being matched to her skin tone by the same artist who worked on Heather Mills’s leg when she was on Dancing with the Stars.
“I’m not settling,” Sdoia told me. And she shouldn’t have to.