When Insurance Limitations Are More Disabling Than Losing a Limb

Daily I confront the struggles of individuals trying to access prosthetic care. I have supported and counseled grandparents who made the difficult decision to remortgage their home so their grandson could walk. I have hugged young mothers who, because they cannot afford the co-payment for their prosthetic leg, are forced to live on the sidelines. I have met fathers who work two jobs to provide basic mobility for their children.

I am kept awake at night as I remember a charming 8-year-old boy who lives not far from Washington, DC. He is in desperate need of a lower limb prosthesis, but his family falls into the financial abyss faced by so many living with limb loss. They simply cannot afford the 50% co-pay required by their insurance company. Straddled with bills and struggling to keep a roof over their heads, the family must watch the energetic boy live his childhood using crutches. He has both the ability and the desire to walk and run with his friends. Unfortunately, his family cannot afford the device required to make his dream of walking a reality.

Two individuals with the same degree of limb loss can have profoundly different life paths simply because of their insurance and economic status. Having to use a wheelchair because of inadequate insurance is all too common, and this is a travesty. In this country, access to a quality prosthesis is a privilege afforded to the affluent and those with exceptional medical insurance. When individuals cannot afford a prosthesis, they are often forced to fundraise to acquire the medical device that has been prescribed. In essence, their mobility and future health is dependent upon little more than an Internet popularity contest.

When an individual does have prosthetic coverage, he often settles for antiquated technology due to expensive copayments or insurance denials. Many companies habitually deny technologically advanced devices as a cost cutting effort, hidden behind terms like “experimental” or “not medical necessity” and despite medical evidence that they are warranted. As a result, individuals with limb loss are forced to live limited lives with inappropriate prosthetic devices while they fight through a quagmire of insurance red tape.

Although the issue of lifetime caps was supposed to be resolved through the adoption of the Affordable Care Act (ACA), situations still arise where individuals are denied a prosthetic due to financial limitations. Prosthetic users living in New York were horrified to discover that the policies offered through the state insurance exchange provided only one prosthesis per lifetime. Considering that the average device is warrantied for three to five years, the notion of “one and done” offered by the collective insurance exchange jeopardizes the mobility and health of tens of thousands of amputees.

Although New York changed this rule in 2016 to require its benchmark plan to offer prosthetic repair and replacement, many other states are still further disabling their residents with inadequate prosthetic coverage. The insurance exchanges in many states limit prosthetic access to repairs of the existing device or one replacement when medically necessary. These policies reflect the one limb per lifetime protocols set forth in New York, leaving countless individuals with limb loss forced to ambulate on broken or antiquated devices. When a device is irretrievably broken, the replacement prosthetic covered reflects the same technology as the original. Thus, new prosthetic technology which has been proven to improve ambulation and overall health is only available to the affluent who have the luxury of premium insurance and/or the financial means to pay out of pocket.

Insurance Fairness legislation has been adopted in 20 states. In those states where it has not been enacted, we encourage the community to contact their state representatives to urge them to act on this issue. While state legislation is a commendable start, these laws affect less than half of those covered by private insurance, as many employer-sponsored policies are not subject to these laws. Federal Insurance Fairness legislation for prosthetics is therefore also required to fully protect the needs of individuals with limb loss.

Unfortunately, garnering support for federal legislation can be difficult, especially given the small size of our community. However, when confronted with challenges, we have also proven that we can make our voices heard, as happened in 2015 when more than 100,000 people signed a “We the People” petition in only 17 days, becoming the first disability-related We the People petition to satisfy the 100,000 signature barrier and obligating the White House to respond. And with five hundred amputations every single day in this country, limb loss and insurance fairness are issues that will impact almost everyone in some way, directly or indirectly.

Mobility after limb loss is obtained not only with hard work, perseverance and determination but also by policy writers and insurance adjusters. In this country, the opportunity to ambulate with a prosthesis is not afforded to every amputee. Many are disabled more by their insurance and financial situations than the loss of a limb.

In terms of technology, there is no better time to be living with limb loss. I have witnessed the great strides made in suspension systems, socket design and components during the decade since I became an amputee. From high tech bionic devices to specialized fins for swimming and blades for sprinting, the possibilities appear endless. Alas, the dirty little secret of accessibility to devices continues to limit the potential of amputees across this country.