Don’t Take “No” for an Answer

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I can be as stubborn as the day is long, and as one of my sisters reminds me, it has served me pretty well in life. Having said that, the one thing that has been strongly reinforced as a relatively new below-knee amputee is: Do not simply take “no” for an answer if it’s something you believe in.

Prior to my amputation in March 2018, my surgeon and his staff were diligent in providing me with resources needed so that I could make informed decisions about my care. One area that needed careful evaluation was researching and meeting potential prosthetists. One prosthetist and organization quickly came to the forefront, consistently highly recommended by other amputees, physical therapists, and physicians. My initial meeting was positive, considering the unsettling situation that resulted in my visit. A strong connection on many levels was made but at the meeting it was determined my health insurance provider considered this organization “out-of-network.” Those three little words translated into being financially catastrophic to engage in a long-term relationship.

I pursued working with the area’s in-network provider. I kept an open mind, but my gut feeling told me something was amiss. The other important thing I have learned in life: Trust your instincts. After receiving my first prosthesis, my physical therapy goals included learning to walk with the intent of running and returning to my high-level of activity. Based upon my fitness, strength and personal motivation, my physical therapists were convinced I would quickly be successful in reaching my goals. Unfortunately, after many months of working with this provider I was nowhere close to obtaining a proper fit with my prosthesis. I endured each hour of therapy but was unable to extend my wear time. There was little education and my questions remained mostly unanswered. I did not know what to expect nor how to identify or manage changes in my residual limb or prosthesis.

After five months of frustration, two ill-fitting devices and no progress towards my goals, I questioned the quality of care I was receiving from the prosthetist. My surgeon, his nurse and my physical therapists agreed that I would benefit from a change in prosthetists. My surgeon also agreed that I needed to work with the out-of-network prosthetist; they had much more experience with complicated cases such as mine. He was willing to do whatever it took on the insurance appeal to change the provider’s out-of-network status to in-network.

Here begins our nearly six-month battle with the insurance provider. Our fight was wrought with frustration as we tried to right their wrong and we spent hours on the phone with wrong people who consistently gave wrong information. It took every ounce of energy I had to keep arguing my case. I shed many tears in anger because of people’s inability to do the right thing. Many days it might have been easier to give up the fight, but I knew from the get-go that being able to walk on two feet again was far too important. The brick wall of a high-powered insurance company was not going to stand in my way. “No” was not, nor was it ever going to be, an acceptable answer.

My surgeon submitted a compelling request to my insurance provider. Shortly thereafter, I was provided a case manager. She read my surgeon’s letter and it was clear to her that he had my best interests at hand. She shared with me that a decision would be made “soon;” I was encouraged. Days turned into weeks and into months. She always had little information to share. After six weeks I let her know I needed to know what was causing the delay, what needed to be done and by whom, in order to get the request granted. My surgeon’s office was informed they needed to do a peer-to-peer (incorrect), had to work directly with the insurance company to add a provider (incorrect), had to request a gap exception (partially correct). The insurance representative later clarified that the gap exception needed to be requested by the new prosthetist’s organization (actually correct) but then came back and said I needed to request it (really incorrect). I called my insurance provider and spoke with multiple people. Not one of them had heard of “gap exception” and that option did not exist. I felt as if I was in the Twilight Zone. The case manager did some research to determine why there was so much misinformation. She was able to confirm the prosthetist’s organization was the right party to make the request. The necessary paperwork was submitted. The case manager confirmed a complete packet was received and let us all know the case was marked as expedited. A decision – “hopefully, a favorable one” – would come “soon,” probably within a couple of weeks.

Two weeks elapsed and I called for an update. I was informed that the decision date would be in an additional two weeks. The day came, and when my phone rang, my heart raced. I knew the minute she began speaking it was not going to be good news. There was much hesitation in her voice because she had to share that “they” (I was never told who “they” were, and it was unclear whether she knew) denied my request to work with the prosthetist who would provide the higher standard of care I deserved and needed. As I disintegrated into tears, my husband took over the call. He let them know their response was unacceptable, we deserved better, demanded to know who made the decision and how they reached their decision. Earlier, the case manager did say the call was on a recorded line, and actually told him that she didn’t believe anyone even read the appeal. He demanded a return call from someone who was able to give us details on the decision. Multiple return phone calls from various supervisors followed, finally saying that the case would be immediately re-reviewed.

A week later, I received a call from the case manager, who informed me that our request to work with the out-of-network provider had been approved as in-network. I would receive confirmation by letter – which, incidentally, never came. I also received a phone call from my soon-to-be new prosthetist’s office manager, and she said that they, too, received a call from the case manager saying that our request was considered in-network. Success!

We began working on a new prosthesis. I knew I was in the right place. It truly felt like I was working with a family. Everyone there supported my appeal but, more importantly, each of them supported me, and with so much passion. I felt very lucky and was excited to take those first “first steps” again.

About a month later, the bottom fell out. I received an “Explanation of Benefits” from my insurance provider and the claim was processed out-of-network, leaving me with substantial financial exposure. I made a prompt call to the claims department, figuring it was an oversight or processing error. The result: The provider was never approved as in-network. When later questioned, my case manager danced around her prior statement of the provider being approved as in-network. She then informed me that my only option was to do a formal appeal. I questioned, “Didn’t we just spend the last five months on an appeal?!” It was her understanding that the issue was with benefits and not the authorization itself; the information submitted in the prior months was processed incorrectly, and there was no way to rectify it. I was stunned and devastated.

Collectively, we continued to work through the appeal. I received assurance by the case manager that this “new” appeal was a high priority and marked expedited. The following day, I learned that the expedited option was not possible and it would be processed in the order it was received and it should take at least a month to review. I shared with them that the appeal was submitted five months ago, which they completely mishandled, and that we all deserved better. The prosthetist’s organization pushed back harder, citing the provider’s every misstep, and because the insurance provider prefaced all calls were on recorded lines, the verbal approval of the in-network status existed, and would be requested, if necessary. The insurance provider was more than obligated to honor our request.

We – me, my surgeon, his nurse, my physical therapists, my new prosthetist and all of the “behind the scenes” people at the organization –  all fought, and fought hard, through seemingly endless red tape. We climbed what I felt was Mount Everest. Thanks to my well-served stubborn streak, coupled with the unbelievable support from my entire team, I am happy to say we successfully reached the summit. My new prosthetist was IN-NETWORK!

-Susan Fumagalli Mahoney