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.