How I Fought My Health Insurance Provider for a (Prosthetic) Leg to Stand On
Life-changing events can occur suddenly and without warning. That’s certainly what happened in my story. I am telling you this not to scare, alarm or outrage you. Instead, I hope my story can enlighten you to the fleeting nature of life, the triumphs and tribulations of modern medicine and the impact of our politics.
On the night of Aug. 10, 2005, my car careened off the road while I was trying to avoid a deer. After I collided with a telephone pole, rescue workers in my suburban town struggled to use the Jaws of Life to free me from my car. I was hospitalized for the next nine months while my mangled extremities were reconstructed. The accident resulted in the amputation of my left leg, damage to my right shin and the loss of the flexors in my once-dominant right hand. All four of my extremities sustained neuromuscular injuries, leaving me with temporary mobility comparable to a quadriplegic. My life was changed instantly.
It was difficult to suddenly lose the ability to be independent after spending my teenage years struggling to find my own self-image. I had been an active member of the community and involved in team sports, including an eight-man rowing crew. After the accident, I was forced to devise a new life plan.
This involved an intense recovery that exposed me to almost every aspect of medicine and healthcare. On one hand, a team of doctors saved my life, with integral coordination, communication and an amazing sense of collective empathy. On the other, insensitive encounters with physicians still resonate and influence me a decade later. The partner of one of my orthopedic surgeons came to visit me in the hospital. He took one look at my chart, one look at me, and said just one phrase before walking out: “One year.” Unfortunately, he was correct, as the last of my near 50 surgeries was almost one year following the incident. But that insensitive encounter still sticks with me to this day and became the main motivating factor in my rehabilitation.
The most essential part of my recovery would be mastering the use of a prosthetic leg. At the time, American soldiers who were losing limbs in Iraq were shown on television running with their new computerized knees, called the C-Leg. This technology was far better than the older hydraulic knees of the post-Vietnam war era. I told my insurance carrier that I also deserved one due to its superior medical benefit.
My carrier responded by saying the prosthetic was “experimental…not a covered item.” I argued my case that it was not experimental, which is the reason it was approved for all veterans of war. It was clearly a better knee, although a more expensive product. I appealed to my insurance twice, with each appeal requiring extensive documentation demonstrating the clear medical benefit of the technology. I used the help of experts in the field such as Hugh Herr of MIT (a consultant for the Olympic Committee that ultimately allowed Oscar Pistorius to compete). Each appeal was denied.
I sought guidance from the New York State attorney general's office, and was advised that legal action was doomed to fail and the cost would likely exceed $100,000. As a last resort, the office suggested I appeal to the New York State Insurance Commission. After months of deliberation, they agreed that all individuals with private insurance are entitled to this prosthetic technology with proven medical benefit. Without the use of my prosthesis, I would be confined to a wheelchair. I was happy to be able to regain my independence and finally begin my life away from home.
I thrived as an undergraduate at a prestigious university for several years without problem. But unbeknownst to me, my troubles were starting again. While I was attending graduate school in public health, only four years after receiving my prosthetic, the technology started to wear out. The hydraulic fluid filled with pockets of air, making an audible noise whenever they were activated. This severely reduced the hydraulic resistance and limited the functionality of the product. My prosthesis was no longer under warranty by the German manufacturer, Otto Bock. The cost to replace the hydraulic fluid would have exceeded $10,000 and would not extend the lifetime of the microprocessor in the knee. To put this into context, hydraulic brakes in cars cost approximately $500 to replace. Because only one company was allowed to repair its prosthesis, it could justify the ludicrous charge. No other manufacturer would help me.
Since I could not repair the leg, and feared my prosthetic would no longer be functional, I appealed for a new prosthetic leg through my insurance carrier. That was when all of my quandaries began again.
My healthcare insurance policy contained a clause mandating just “one prosthesis per lifetime.” The verbiage in the contract was written in such a way that I could not appeal on the grounds of medical necessity. This is a clear policy injustice, as prosthetic devices are prone to breakage. As far as the insurance company was concerned, it had fulfilled the intent and design of the contract.
It’s still unclear when this clause was entered into my health insurance policy. It’s unlikely it was included in the policy before my accident, when I was a healthy 17-year-old. No parent would have chosen a policy with this included in the plan. This limitation was never discussed before the computerized prosthetic was awarded. So it seems likely that the clause was added after I was in my motor vehicle accident, or introduced as a cost-saving mechanism after I won the appeal for a computerized prosthetic.
I was appalled that they could change the contract to save money, and likely out of annoyance that I had won my appeal. I consulted numerous resources, including the attorney general, who suggested the State Review Board. I then became familiar with the concept of an “adhesion contract,” defined as follows: “A contract between two parties, where the terms and conditions of the contract are set by one of the parties, and the other party has little or no ability to negotiate more favorable terms and is thus placed in a 'take it or leave it' position.”
There was no legal action that could be taken. It was perfectly legal for my insurance company to change the policy without notification. There was no way to appeal the decision. I was involved in a contract with an insurance company that considered itself providing “Uberrima fides,” a Latin phrase translating to “utmost good faith,” and the legal doctrine that governs insurance contracts.
I walked on my failing prosthetic for another two years. I was fearful my prosthesis would stop working at any time. The hydraulics were obviously malfunctioning; there were times where I would be walking down the stairs and the hydraulics would unexpectedly offer little resistance from collapsing. Imagine walking down the stairs fearing your knee might suddenly give way at any second. It was one of the most anxiety-producing situations of my life. Nevertheless, I was determined not to revert to using a wheelchair.
During this time, I chose to attend medical school. I was dedicated to imparting my perspective and helping my peers become more empathetic physicians. I was both naÃ¯ve and misguided. It became increasingly difficult to juggle medical school curriculum when I had a significant part of my body declining. I switched health insurance plans to the school insurance policy, which would only cover a small fraction of the costs needed to get a replacement prosthetic. After no resolution or assistance from my university, I made the difficult decision to leave medical school. Simply put, I was unable to keep up with the fast-paced curriculum while also dealing with the struggles in my personal life. I was in my mid-20s and six figures in debt. Insolvent, and fearful of being uninsured, I applied for state Medicaid.
This turned out to be the best decision of my life. Medicaid paid for the entirety of my prosthetic care, including a new microprocessor knee, a new energy storing foot, a carbon fiber custom-made socket, and silicone liners with accessories. It covered the cost of everything at no out-of-pocket expense, and enabled me to live my life. Medicaid truly saved my life when so many other “helping” resources continued to let me use failing technology.
I find it appalling that the only way I was able to become a complete human being was by becoming destitute. I am a human being who has desires far beyond being a needy member of society. I would like to have a fulfilling career and a family. I do not want to remain on medical assistance. Yet, a Department of Veterans Affairs study showed the average lifetime cost for prosthetics and medical care for loss of a single leg for a veteran of the Iraq or Afghanistan wars is more than $1.4 million. With private insurance unwilling to cover these costs, it’s highly unlikely I will be able to support myself, much less my future family.
In another six years, when this technology inevitably starts to fail, will I have to revert to destitution to receive comprehensive care? Will I be financially secure enough to pay tens of thousands of dollars for my prosthesis? Or, will I have to fight all over again for a leg to stand on?