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.
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.
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!
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
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!
aftermath of the bombings could have been an opportunity to create a
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.
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.
- 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.