High-tech prosthetics not available to all amputees

CEDAR RAPIDS — Falling was a regular part of Jaymie Noffke's childhood as she navigated the world with basic hinge prosthetic legs.

That all changed when she was 19 and got her first pair of C Legs, above-knee prosthetic limbs that use microprocessors to sense body position to help amputees walk, climb or sit.

'I would fall three times a week on my old legs,' said Noffke, now 31, of Marion. 'Now I can't remember the last time I fell.'

Amputees, doctors and prosthetic makers say high-tech prosthetic limbs — though expensive — can save the health care system money by reducing injuries and chronic illnesses due to inactivity. A mobile adult also has a greater likelihood of being able to work rather than relying on government support, advocates said.

This is why amputees were shocked when Medicare earlier this year proposed limiting access to high-tech prostheses after a 2011 report showed Medicare paid out $43 million for lower-limb prostheses that didn't meet coverage requirements. Most payments were made to suppliers who incorrectly billed for the devices, the Wall Street Journal reported.

The rules would limit prosthetic choices for people who can't walk with 'the appearance of a natural gait' and recommend against vacuum suspension systems many amputees use to keep their prostheses attached, advocates said.

'The new policy recommendations want to go back to wood legs and wool socks,' said Rod Cheney, executive vice president of American Prosthetics & Orthotics, a rehabilitation center based in Clive.

Amputees worry about the Medicare rules because private insurers often fall in step. An online petition to rescind the draft policy has more than 110,000 signatures, and hundreds of amputees showed up at a public forum in Baltimore in August. Federal officials have indicated willingness to change the proposal based on the outcry.

Causes of amputations

Nearly 2 million people in the United States are living with limb loss, according to the Amputee Coalition, and there are about 185,000 amputations each year.

The need for more than half of the amputations are caused by vascular disease, including diabetes, and another 45 percent are from trauma, such as car wrecks or war. A smaller group of amputees have congenital anomalies.

Noffke falls into this camp. Born without tibias, the larger of the two lower leg bones, Noffke's legs were amputated above the knee when she was two years old. She first walked with straight, wooden prosthetic legs at age 3.

Growing up in Hopkinton, a town of about 600 people in Delaware County, Noffke was known in the community and no one asked questions about her awkward gait or frequent falls. She played softball, went swimming and baby-sat her nephews.

'I don't remember there being much I didn't do, I couldn't do,' Noffke said.

But when she went to Kaplan University in Cedar Rapids in 2003, Noffke was overwhelmed by questions about her legs. Her grandmother saw an article about a Waterloo patient being fitted with a C Leg and opened Jaymie's eyes to the possibilities of a new prosthetic.

'The most dramatic difference was safety,' Noffke said.

Not only could she avoid regular falls, but, with the C Leg, her gait was smoother. 'People didn't look at me funny as often.'

The advanced prosthetic made it easier for Noffke to pursue a career as a pediatric nurse and, now, a clinic manager.

Costly New technology

Prosthetics have developed from peg legs and hook hands of the Dark Ages to titanium-and-carbon fiber devices that use microprocessors and robotics to allow amputees more functionality. Modern silicone covers create a more natural appearance, but an increasing number of amputees skip the cosmetic shell to display their prosthetic.

Media images of prostheses often show the high-performance variety, such as the X3, a durable, waterproof above-knee prosthetic developed by Otto Bock with the U.S. military, or carbon-fiber blades used by athletes such as sprinter Oscar Pistorius.

'All the images you see in the media of all those prosthetics — it can be difficult and expensive to get those,' Noffke said. 'It's kind of frustrating.'

Ken Earnest, 71, of Waterloo, also has a C Leg after losing his right leg to an infection in 2008. He runs an Amputee Coalition support group in Waterloo that includes a veteran who lost a limb in Vietnam, a farmer whose foot was amputated after a farm accident and people with diabetes.

'I'm the only one with an above-knee (amputation) that actually has a prosthetic. My leg was $60,000 to $65,000. No way in heck a person could pay that out of their pocket,' said Earnest, who had coverage.

High-tech often out of reach

The Genium, a bionic above-knee prosthetic leg that promises to make it easier for amputees to climb stairs, change directions and avoid obstacles, came out in 2011, but still is just a fantasy for most amputees because of the $90,000-plus price tag.

'There's no identified reimbursement codes' for insurance, said Travis Carlson, a prosthetist-orthotist for Clark & Associates Prosthetics and Orthotics in Cedar Rapids.

If patients want a Genium, they need to work with their doctors to make a case they need the device to continue a high level of mobility, said Karen Lundquist, spokeswoman for Otto Bock, which makes the Genium. Amputees with active jobs, such as firefighters, or athletes are the most likely to get coverage for the new device.

But getting prosthetic coverage in Iowa is easier than in some other states.

Iowa is one of nine states with laws saying the insurance coverage for prostheses must be at least as good as Medicare, which requires 80 percent of the cost of a prosthetic be covered, sets a five-year useful lifetime limit and has no exemptions on microprocessor devices, according to Doyle Law, a California-based firm that specializes in amputee law.

Eleven other states require prosthetic coverage be equal to other health services.

'The insurance companies do a pretty good job with reimbursement,' said Cheney, of American Prosthetics. But 'patients have got to be their own advocates.'

Improved function

Jaymie Noffke recently received an upgrade to a C Leg 4 after her left prosthetic broke down earlier this year. Because the updated knees have a different operating system and new features, Noffke's insurance paid for two new prostheses, at a cost of $99,000.

Noffke paid several thousand dollars out of pocket.

But she said the improved functionality is exciting.

The C Leg 4 responds to tiny cues from her body position to know when Noffke wants to take a step. She previously had to focus on loading weight on the prosthetic toes to trigger the leg swing, explained Carlson, who fitted Noffke with the new device earlier this month.

The new knees lock if Noffke pauses in one position to make it easier to sit and the shins sink naturally to the ground without Noffke pushing them down with her hands. The C Leg 4 is also water resistant, which means Noffke can go to the splash pad with her children, ages 3 and 6, without worrying about a short circuit.