Susan Bailey was a happy 23-year-old wife and mother of two energetic young boys until about 18 months ago.
In July 2007, Bailey became infected with E. coli bacteria. Doctors said she might have picked it up from something she ate. She became so sick she spent two weeks in a coma. During that time, the infection spread to her legs.
With her life at stake, her husband gave doctors permission to amputate Bailey's legs above the knee. When Bailey emerged from her coma, she didn't realize at first that her legs were gone.
"My husband had to tell me several times that I didn't have any feet or ankles or knees," she said. "And that was very hard for him to tell me, and it was hard for me to hear:"
Bailey survived and slowly began the difficult road to recovery. But, along the way, she ran into an unexpected roadblock with her health insurance company, Anthem Blue Cross and Blue Shield.
Anthem agreed to pay for Bailey to get a set of prosthetic legs. But because of the unusual nature of her condition, amputation above the knees, the devices they gave her made walking difficult and painful.
"Those stubby prosthetic legs don't bend," she said. "They're straight. So I don't have a knee to bend to help me physically walk up the stairs. So physically right now ... it takes my breath away to walk."
Bailey said the prosthetic legs, called stubbies, caused her to fall down frequently. Basic tasks, such as making lunch for her kids or taking them to the school bus, became a big struggle.
Then she learned about Hanger Prosthetics and Orthotics Inc., a Bethesda, Md., company that makes legs specifically for people like Bailey, whose legs have been amputated above the knee. They are called C-Legs, because they have a built in computer chip that automatically makes adjustments to make walking easier.
Brooks Rainey, who creates prosthetics for Hanger and wears a C-Leg, said that when he met Bailey a year ago he thought she was a perfect candidate for a C-Leg.
"This is what is going to allow her to do the things that she needs to do in her everyday life, and there was really no other option in my mind," Rainey said.
Insurers Refuse to Pay
But Anthem Blue Cross and Blue Shield refused to pay for the more expensive C-Legs, because they were experimental and not medically necessary. More than 25,000 C-Legs have been used by amputees.
"Sometimes a treatment will be thought of as mainstream for a particular patient population, but it will be thought of as experimental for a different population," said Susan Pisano, a spokeswoman for the insurance lobbying group America's Health Insurance Plans in Washington, D.C.
Bailey said she fought with Anthem for 10 months, filing two appeals, which the company denied.
"It was tearing me up inside that I had just been told no for something that I really, really need," she said. "To live my happy life in the same way that I was living it in June 2007."
There are nearly 2 million amputees in the United States, and most health insurance policies do a poor job of covering prosthetics for them, said Patty Rosbach of the Knoxville, Tenn.-based Amputee Coalition of America, an advocacy group that works on behalf of people who've lost limbs.
"I think that everyone assumes that if they are going to have a leg amputated or an arm amputated that it would be automatically covered by their insurance for them to get a replacement prosthesis, and I think they are absolutely astounded to find in a significant number of cases -- getting more every day -- that this is not, in fact, true," Rosbach said.
Poor Prosthetics Coverage
Rosbach said that because people don't expect to need a prosthetic limb, they don't notice the fine print on their polices limiting their coverage
"I think that you have to look at the very, very small print, and I don't think the majority of people, when they look at their policies, actually look at it word for word," Rosbach said.
Pisano of America's Health Insurance Plans said, "There are instances where employers are not purchasing the benefit to the degree that they might like."
Insurance lobbyists also argue that paying for claims like Bailey's will raise rates for everyone. At $100,000 a pair, the C-Legs are expensive.
The Amputee Coalition of America claims that insurance companies not only balk at paying for the more expensive C-Legs but also for basic prosthetic legs, which can cost as little as $12,000.
Meanwhile, Anthem Blue Cross Blue Shield refused do an on-camera interview but issued a statement saying its "medical policies are intended to reflect the current scientific data and critical thinking."
Bailey Gets Her C-Legs
The Virginia Bureau of Insurance, which regulates insurers in Bailey's home state, reviewed her case after receiving a call from "Good Morning America." Within a few weeks, the state overruled Anthem and ordered them to pay for her new legs.
Bailey is now spending her time learning how to use her C-legs. She's confident that she will soon be keeping up with her boys again.