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Triple amputee craves new hand, but insurance balking

His new-and-improved prosthetic legs are working well, but triple amputee Kent Carson says he'd give up both for a new left arm with a hand.

"Legs aren't as important as a hand," says Carson, 56, who was a suburban bank manager from Round Lake Beach last August when a mysterious bacterial infection causing Legionnaires' disease almost killed him. In September of 2012, doctors amputated Carson's legs below his knees and his left arm below his elbow. Through rehabilitation, he's learned to walk again and can go up stairs. But his prosthetic arm frustrates him.

"Lately, I haven't even put it on sometimes," Carson says. His fake arm is held on by bothersome straps that loop around his shoulders. By extending his arm, Carson can manipulate cables that control the hook at the end of his arm. Stretch out his arm and the hook opens. Relax, and it closes.

"Think of it as a large tweezers," says Carson, who adds that the hook limits him to simple tasks such as holding a newspaper. "I can't zip my jacket. I can't pick up a ketchup bottle with it."

At the world-renown Rehabilitation Institute of Chicago, Carson learned about a new prosthetic hand - the "i-limb ultra revolution" made by Touch Bionics. It uses neural signals from a patient's muscles to control movements in a robotic hand.

"That hand has five fingers that move independently," says Carson, who could control them by flexing the remaining muscles in his arm. "I can actually still feel when I open my hand or make a fist even though my hand isn't there."

The hand, which offers 24 grip patterns and a rotating thumb, even has a "my i-limb mobile app," available through the Apple app store, which allows wearers to program custom movements. What it doesn't have in Carson's case is the insurance approval needed to pay for it. As an employee of U.S. Bank, which is headquartered in Minneapolis, Carson is covered by Blue Cross Blue Shield of Minnesota, which he says has rejected the i-limb as not medically necessary even though the i-limb has been covered by Blue Cross Blue Shield in Illinois and other states.

"As much money as they spent saving my life, I'm sure they don't want to spend any more," Carson says.

Insurance coverage and benefits vary from company to company and even within companies from state to state or plan to plan.

"Our current medical policy states that when medically necessary, prosthetics should be able to restore natural appearance and function while providing comfort and ease of use for the individual," says Jim McManus, principal public relations consultant for Blue Cross Blue Shield of Minnesota. "A prosthesis with individually powered digits, including but not limited to a partial hand prosthesis, is considered investigative due to a lack of clinical evidence demonstrating its impact on improved health outcomes ... Should future studies indicate that emerging technologies in prosthetics meet the same efficacy standards as those currently covered, our policy may be revised to reflect such findings."

While insurance reimbursements for the i-limb vary, "we have a very high reimbursement rate among several insurance payers across the U.S.," emails Karen Hakenson, the North American spokeswoman for Touch Bionics.

The i-limb hand, which needs to be fitted on a prosthetic arm, generally costs between $80,000 and $120,000, which includes custom fitting and extensive training, Hakenson adds. The "vast majority" of the more than 4,000 i-limb hands in use around the world have been covered by insurance, she says.

Touch Bionics and the Rehabilitation Institute of Chicago are helping with his appeal, Carson says. In addition to making better limbs, researchers need to prove their value to insurance companies.

"The Rehabilitation Institute of Chicago's work in the science of bionics is focused on enhancing the ability of amputees," says Levi Hargrove, lead scientist for research at the RIC's Center for Bionic Medicine that led to last week's unveiling of the world's first thought-controlled bionic leg. "Our future work will focus on quantifying these benefits so that the device will be reimbursed by insurance companies for those who need it."

Carson, who is working on getting his driver's license and is in the process of moving to a ranch house in Aurora with his fiancee Cheryl Johnstone, says he'd be happy to take a job as a bionic spokesman telling people about the advances made in prosthetics.

"I would like to drive and be able to go back to work. It's boring sitting at home," he says. As he waits to see if the appeal process will find a way to pay for an i-limb, Carson imagines how much better his life could be with a working hand.

"That hook kind of freaks people out. The hand," Carson says, speaking figuratively and literally, "opens up a whole new door of opportunity."

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Images: Triple amputee Kent Carson

With 24 grip patterns and a rotating thumb, the “i-limb ultra revolution” bionic hand allows for a wide variety of movements. Courtesy of Touch Bionics
The “i-limb ultra revolution” made by Touch Bionics looks “futuristic,” but triple amputee Kent Carson says it would allow him to do many of the things he did before his amputations. Getting insurance to pay for it is his goal now. Courtesy of Touch Bionics
  Working with physical therapy assistant Kathleen Dub during rehab at the Advocate Christ Medical Center in Oak Lawn, Kent Carson learned how to use the hook at the end of his left arm to grab objects. Now Carson hopes to persuade his insurance company to pay for a bionic hand with movable fingers. Daniel White/dwhite@dailyherald.com
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