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Fighting My Insurance Company from My Wheelchair: An Unnecessary, Mismatched Battle

In 2022, I suffered a traumatic spinal cord injury. Rendered a tetraplegic (paralyzed from the chest down), I was in rehab for months after spending three weeks in the ICU. The administration on many occasions dumped their responsibilities on me, forcing me to figure out everything from insurance coverage, to primary care, home care, outpatient therapy and the numerous specialists I would need for the foreseeable future. They promised to assist with applications for grants to secure necessary durable medical equipment, but actively dodged and deflected my attempts to push the paperwork through. Consequently, instead of focusing entirely on my health and recovery, I was placed in a position of having to deal with additional, yet avoidable stress.

Despite an incredible amount of assistance from family, it still took months of working as my own care manager and trying to navigate the intricacies of our healthcare system before making any progress with insurance, doctors and other care. It was devastating when I found out I couldn’t start outpatient therapy for five weeks following my discharge from inpatient because they had not given me the correct type of referral. In that time, I saw much of the physical progress for which I had worked so hard, actually regress, taking away what little independence I had gained.

In the times when I called my insurance company, with questions concerning coverage, the representatives couldn’t give me a clear answer of whether or not I was covered, nor guidance on how to acquire that information. Once accepted by the doctors I needed, appointments were scarce to say the least. For months, insurance assigned me to primary care providers who weren’t taking new patients. During that time, I was forced to ration my medications as it was difficult to get them refilled; this was very stressful and probably quite dangerous. At the start of the new year, one of the specialty medications I needed cost me $3,600 out of pocket before insurance would cover any cost. Insurance also neglected to cover necessary at-home nursing, and at $70/hr I’m struggling to afford the care I need while my family and friends work. Furthermore, I was told I would need a neurologist, physiatrist, cardiologist, hematologist and urologist. To this day, I only have appointments scheduled with three of the five necessary physicians. Of those three appointments, two of them are still months away, placing my health in a tenuous position.

Would someone please explain to me how it is that in the United States, considered to be one of the strongest and most affluent nations in the world, we cannot seem to get our own health care system functioning in a way that is truly helpful, free from unnecessary entanglements and puts patients’ needs first? My injury has turned my life, and the lives of those around me, upside down and my experience with our health care “providers” has only added to the stress and adversity I have to deal with. The country would be better off with universal healthcare.

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