BOSTON One of Boston Marathon bombing survivor Heather Abbott's biggest concerns is whether her insurance will cover everything she needs to feel whole - not just now, but for the rest of her life.
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, 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 Boston 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 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?
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 she 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," she 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 what the standard coverage for prosthetics is, 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 by whether it's an individual or employer-based plan. Even for large employers, what's covered essentially depends on how much the company wants to spend.
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 variation, and maybe some wiggle room.
Meanwhile, Tim Sullivan, a spokesman for Spaulding Rehabilitation Hospital, says insurance companies 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, "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. "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, and was clod-hopping around" initially. "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."
Last week, she took her first steps on her initial new leg in front of reporters and photographers.
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.
"I'm not settling," Sdoia told me.
And she shouldn't have to.