Saturday, July 26, 2008

Why I'm here

Since losing my leg above the knee in October 2007, it seems the world is filled with heroic and inspirational examples of amputees that defy all odds. Fitted with modern, high tech components, they are no end of inspiration. Oscar Pistorius can compete in the Olympics, Sarah Reinertsen is the first woman amputee to compete in the Ironman and commercials show her stepping out of a luxury car for a run in the park. An amputee walked down 70 flights of stairs to escape the World Trade Center thanks to his microprocessor knee. Ronan Tynan, a bilateral amputee, is an equestrian and world class tenor. Molly the Pony survived hurricane Katrina only to be attacked by pitbulls and lost part of a front leg but now gets around on an equine prosthesis and is an inspiration to others. Iraq war veterans are undoubtedly the most visible example of limb loss and are probably doing more to draw attention to the current state of the prosthetic industry. The industry has had to meet the demand of these young men and women who want, and deserve, to be restored to their former active lifestyles. When faced with making a choice to amputate my badly damaged and irreparable knee, I studied all of these examples of extraordinary amputees getting on with their lives, running, jumping, riding, swimming, cycling, even singing! Their ability gave me courage and confidence that I would be fine.

How did I get to this place in life? I had a birth defect as a child that resulted in a non-union fracture of the tibia – the big bone below the knee. At age 11, there were no options and my parents discussed amputation with me. I saw it as a ticket out of jail and I was right. As a below knee amputee, the world was mine for the picking. I knew no limitations. I was warned by my doctors that, “when you get older that knee will give you trouble.” They were right. I got older and my knee blew up after a particularly bad fall.

After the surgery, I awoke to a very different world. I was no darling of the media, just an average, 54 year old scientist who needed a prosthesis, working for the State of Kansas. I wasn’t planning on running a marathon, I just needed the components that could return me to where I was functionally before the accident. My insurance covers a temporary and a permanent prosthesis. The temporary prosthesis is just that – a temporary, bare bones prosthesis that gets you up and walking again. There are essentially 3 parts to an above knee prosthesis: 1) the socket that fits over the residual limb (the part that’s left) which must fit like a glove or you have no control over 2) the knee, which can range from a simple hydraulic knee to a microprocessor knee depending on your functional demands, and 3) the foot, which can range from a simple, low-heeled walking foot, to a foot that adjust to different heel heights, to a running blade. The residual limb will shrink after amputation, a normal process, that requires several new replacement sockets to maintain fit. I was fitted with my temporary prosthesis in December 2007.

For most of January and February I adjusted to learning to walk again. There was pain from the amputation, I was not confident that the hydraulic knee would work and I was shrinking out of the socket at light speed. By March, a new socket was required. Gaining the control with the new socket made a difference and I was finally able to get rid of the crutches and wheelchair. Inspired that I could now walk in a straight line with no support, we began the process of planning for the permanent prosthesis.

First I underwent an activity assessment. While I’m no high-profile athlete, I’m no slough-off either. I used to walk about 2 miles a day across campus. I lift weights, kayak, ride horses, cross-country ski, hike, hunt and fish – if I can’t be outdoors with my horses and dogs I see no point in living. Physical fitness is a priority and losing a leg is a small obstacle as far as I’m concerned. After all, if Sarah Reinertsen can do the Ironman, I can do what I want to do, right? Sorry, but that’s wrong. Who determines the limits on my physical ability? Not me, not my physicians, not my prosthetist, but my insurance company.

The administrators of my insurance contract considers the components necessary to build my permanent prosthesis and meet my activity level to be “Deluxe” and therefore, not covered. Wrap your head around that word. I see luxury items as yachts, maybe a Mercedes, a Rolex watch. A “deluxe” prosthesis? Is it gold-plated, fur-lined and diamond encrusted? Hardly! I don’t need a “deluxe” prosthesis, I just need to walk and do the things I do.

As a matter of fact, the prosthetics industry has no basic, standard or deluxe legs on the shelf. Each prosthesis is matched to the wearer’s activity level. A knee designed for high activity and sports will not be suitable for an 85-year old grandmother and Grandmother’s knee won’t help the athlete ski down the mountain. When did limbs cross the boundary of being an essential part of our body to luxury options?

The dirty secret is that there is no prosthetic parity. While the Veteran’s Administration, Medicare and Medicaid cover microprocessor components, many private insurance companies do not. It’s up to the individual insurance companies or plan administrators to determine coverage, and thus your quality of life. Some put a cap on the price, usually a ridiculous amount that wouldn’t pay for a big toe. Others give you “one limb per life” which leaves me asking, “How many lives do I get?” Others consider a prosthetic limb to be “cosmetic.” If that were the case, I should be able to get a face-lift, breast implants and a leg from my local plastic surgeon! Ten states have now passed prosthetic parity laws which require insurance companies to cover prosthetics the in the same manner as they cover other medical procedures and devices. Missouri is in the process and Kansas currently has no existing legislation. A Federal Prosthetic Parity bill was introduced on March 13, 2008 (House Resolution 5615).

I find it incredibly ironic that I work for the State of Kansas at the premiere medical and research facility, yet I am not afforded the same prosthetic coverage as a patient with Kansas Medicaid or a Kansas veteran. So, I decided to fight. After 4 months of appeals and documentation that the prosthesis is medically necessary and that my functional level meets and exceeds those needed to operate the prosthesis, I’ve been told that I’ve exhausted my appeals and that “We’re sorry there wasn’t a more favorable outcome for you.” Well, I’m sorry too. I’m probably sorrier than they are. As much as I hate the public eye, I’ve been complacent too long.

This is the beginning of my quest for prosthetic parity.