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I am a below knee amputee. More importantly, I am also Mommy to two boys, a very active 10 year old (Robby) and an mischievous toddler (Timmy). I have learned that being a parent with a disability can create some unusual and sometimes humorous situations. This blogger is available for hire! Let's talk and learn how a blog can expand your business.

Friday, April 26, 2013

The Dirty Little Secret-- EXPOSED

Last Monday I was horrified by the events that transpired in Boston. Watching the news as the details unfolded, I felt a mixture of outrage, terror and grief. The reports of numerous amputations on the scene made the story personal.

It has been heartwarming watching the world embrace the newest members of the amputee community. Within hours these individuals were flooded with well-wishes, monetary funds were established to provide for their after care, and the peer visitor program was mobilized through the Amputee Coalition. I slept better knowing that these victims were receiving the best services possible and that they would not be traveling the journey alone.

As days passed, my feelings have become conflicted. While I don't begrudge these amputees any of the services or assistance that they are given, their experiences are not representative of the average amputee. According to the Amputee Coalition there are 500 amputations every single day in this country, yet the world seems ready to embrace and support fourteen.

The manner in which the limbs were lost in Boston is horrific and dramatic, but the loss experienced is no more profound nor tragic than the other 486 people inducted into the limb loss community last Monday. Since the bombings, the intense news coverage has exploited every aspect of limb loss with one exception. It is ironic, yet not surprising, that the one issue that has been artfully avoided is the very thing that is disabling the community more than the loss of the limb!

Two individuals with the same degree of limb loss can have profoundly different life paths simply because of their insurance and economic status. Remaining confined to a wheelchair because of inadequate insurance is becoming commonplace, and this is a travesty. In this country, access to quality prosthetics is a privilege afforded to the affluent and those with exceptional medical insurance.

I confront the struggles of individuals trying to access prosthetic care on a daily basis. I have supported and counseled grandparents who made the difficult decision to remortgage their home because seeing their grandson confined to a wheelchair, due to the family's inability to purchase a new prosthesis, was too much to bear. Unrealistic insurance caps established to keep profits high despite further disabling amputees are often exceeded within the first few years after limb loss. A growing child may require a new prosthesis annually, forcing the parents to work longer hours and straining the family unit simply to keep the child mobile.

Under the direction of the American Orthotic and Prosthetic Association (AOPA), the leading trade group for the prosthetic industry, the major manufacturers and practitioners have promised to provide quality devices to all amputees affected by the Boston bombings.  A press release pledged to provide "access to care for uninsured/underinsured amputee victims of the Boston Marathon Bombing to assure that all victims “will walk and run again." While I think it is wonderful that these individuals will never face the lifetime of denials, appeals, mountains of paperwork and the financial strains of the hefty co-pays, this is not the reality for the other 1.7 million people living with limb loss in this country.

The average amputee in this country would never be able to run the marathon in 12 short months, not because they wouldn't be physically recovered, but because they would lack the specialized prosthesis to participate. Sport and specialized prosthesis are considered "luxury items" by the vast majority of insurance companies.   The other 486 amputees will be forced to apply and scrounge for grants and private donations in order to return to their active lifestyle. Inevitably their grant requests will be denied and many will have to wait for years before finally receiving a specialized prosthesis, if they are among the lucky to receive one at all!

The aftermath of the bombings could have been an opportunity to create a meaningful dialog about the unequal access to prosthetic care in this country and the dire need for insurance parity. Instead, the industry has chosen to sweep the "dirty little secret" under the rug, hiding the unsightly struggles from the public. Now instead of witnessing the real life issues of life after a traumatic amputation, the public will be treated to a Utopia version of amputation life where an individual's potential is not limited by their insurance company.

Prosthetic parity is the most pressing issue plaguing the amputee community. Mobility is obtained not only with hard work, perseverance and determination but also by policy writers and insurance adjustors. In this country, the opportunity to ambulate with a prosthesis is not afforded to every amputee. Amputees are being handicapped not by the loss of a limb but by their inability to pay for an adequate prosthesis.

Lifetime insurance caps (many times as low as $10,000) are insultingly unrealistic considering that, according to the Amputee Coalition, prosthetic costs for a person with a single lower limb amputation over five years is $230,000. Many policies have riders excluding bionic and specialized devices, forcing the individual to settle for a device that is inadequate to meet their needs. We need to raise awareness about parity issues, mobilize our resources and in a collective voice scream, "This is wrong. Arms and legs should not be reserved for the wealthy."

Because no tax payer money is involved, Prosthetic Parity pretends to receive overwhelming support from lawmakers. Unfortunately the issue is not a legislative priority due to the relatively small size of our community. We have been in desperate need of a rallying cry, an event that would bring the issue of prosthetic inequality to the forefront so that change can be effected.

The establishment of this coalition is nothing more than an attempt to receive good press and accolades from the American public. 1.7 million amputees will continue to struggle and fight simply because a few industry leaders lacked the gumption and courage to stand up and show the world what life is really like when one is dependent upon a prosthesis. We have traded an opportunity to raise awareness and affect change for a few pats on the back and fleeting accolades.


  1. Well said. It shouldn't have to be a healthcare reform. It should be an insurance reform or actually overhaul. With this so call healthcare reform making it a requirement to have health insurance just made the insurance company more profits for less coverage. Right now I am on cobra insurance and I am unemployed and I struggle with $665 payment a month. That could be almost my house payment. But you are right on the mark for what you are saying.

  2. What can I say other than "You hit the nail on the head". Thank you for speaking the words that I think.

  3. Peg, you are so right in your observations and knowledge of how the system works. Just this week I saw several people in a nursing/rehab home, who have been in wheel chairs for years without and advocate to help them. It was an eye opener for me. Keep up the good work!

  4. Peggy, You are so right! When I saw that all the Boston people involved in the terrorist attack, are getting the care they need I was happy and sad. There are so many people who do not get what they need to lead a productive and happy life. Instead they are a burden to the insurance companies who treat them with disdain. Society treat them like novelties, not to talk about the pervs who bother them. Equality = money.

  5. I am 100% behind you! I have decent insurance, but I still had to pay $2000 (40%) of the new foot I received. The new foot was a "must have" as I was no longer able to walk on the old. It wasn't like I was getting a "special" foot just for fun. Plus, for anyone reading this who doesn't understand prosthetics, that is just the foot component. I still have my original socket, liners, socks, etc. No one should have to remain in a wheelchair due to socioeconomic status. You are right in calling it a "dirty little secret." Most Americans have no idea this is happening. I certainly did not until I became part of the amputee community. Thank you for putting this out there for all to see!

  6. I'm glad I have people like my wife and you fighting for us. I wish the insurance industry, government offices and others were more aware or willing to help!

  7. Thanks Peg, for being a voice for those who have suffered limb loss and their families. Limb loss affects the entire family not just the person with the limb loss. I spent the better part of 15 years battling employer and insurance companies so that my wife could have had the best care possible JUST TO WALK. We were not looking for anything more than basic things to meet the goal. My wife was in the middle of getting a new leg made when she got pregnant and that had to be put on hold. Adjustments were made to her test socket and that is how she survived the 9 months. After my daughter was born the process had to be started over again. The insurance company balked. We worked things out but the struggle was tough. Eventually changed companies and then had to fight my employer because I had a better plan then my co-workers. No extra cost to my employer. Then employer paid the basic and I paid the riders for durable medical. Even then people tried to dictate what my money was buying. I fully understand the frustration that limb loss families go through. Sometimes it is the choice between food and the ability to walk or hold a child. NO ONE SHOULD EVER HAVE TO MAKE THAT CHOICE- EVER!!!

  8. We couldn't agree more. Every person should have access to adequate (not just basic) items needed to have as much mobility as possible.
    Legislators need to know that this is a legislative issue not just an insurance issue. May who are left without decent components leave the workforce and are forced into early social security disability or onto welfare, thereby removing potentially highly productive people from mainstream society and regulating many to dependence or even poverty. Lori Johnson- Bilateral Below Knee amputee

  9. I couldn't agree more. Nobody asks to be an amputee, my husband has battled cancer for 25+ years. He gets no help from anyone. He has been denied financial assistance (Social Security) twice.. they state that according to social security..he is not considered disabled and we get no help....seriously. Every day is a constant struggle. He has constant issues with prosthesis and the medical bills keep rising as we live on only my income. When will it ever end and as I feel for the people in Boston, there are millions of other amputees that need assistance now..what on Earth are they waiting for.. please .. help those amputees that need it.. they didn't ask for this either.. it was chosen for them for some reason or another.. THEY ALL MATTER.. NOT JUST THE ONES IN BOSTON..

  10. I couldn't agree more Peggy. Your article is spot on.

  11. Hello this is Doug Durham RN. I am the founder of Abled Amputees of America. This blog was obviously well thought out and well said. I have been running news article on my FB page about the "new amputees" but I feel that soon...enough will be enough.

    I bought a pin from you, thanks...i like it a lot. Do you think we could chat by phone or correspond by email sometime? I have a few questions, that i would like to get your input on.
    Thanks Doug email is doug@lifecoachdoug.com