"When I was diagnosed with ESRD in 1996 and had begun dialysis treatments, I had the opposite challenge that I do today. Back then, I was over-insured at times! I qualified for Medicare after a period of being on dialysis but as a minor, I was covered under my mother’s Blue Cross/Blue Shield policy in addition to qualifying for state Medicaid. Oh, how I miss the days of having 3 insurance companies fight over who was going to be my primary payer! When I moved from Michigan to Florida in 2010, having known I would need another kidney to replace my rejecting transplanted kidney, I began the process of getting listed with a transplant hospital in the area. Since I still had family in Michigan, I thought I would try to maintain a dual listing in both states to increase my chances of getting another organ since I have exceptionally high antibodies which makes my chances of finding a match close to the odds of hitting a large lottery jackpot.
The University of Michigan Hospital where I was listed at the time of my move informed me that my relocation would affect my ability to be listed with them due to my only having a Medicare policy with no secondary. Initially, I attempted to obtain Medicaid as a secondary in Florida however I made $15 too much monthly to qualify so I was put on a “share of cost” plan. A share of cost plan means that Medicaid coverage would only become active once I met the out-of-pocket monthly expense, which is my share of cost. At the time, I was assigned a share of cost of $1,314 per month. Unfortunately, this coverage did me no good because it is a state insurance program and is only valid in the state of residency.
The transplant social worker then scheduled a couple of conference calls with some insurance providers in Florida (Humana, Blue Cross and Blue Shield, and Aetna) in an effort to obtain a secondary insurance policy so that I could retain my listing status in Michigan. During the conference calls, I was informed by every single one of the agents we spoke with that due to having an active insurance policy in place (Medicare) that legally they could deny me coverage based on my pre-existing conditions. Even at their highest policy rate, which was over $900 a month, they would not provide me secondary coverage.
Discouraged, I decided that I would have to withdraw myself from the U of M transplant program and be limited to the hospitals in Florida. Then to my surprise, during my pre-transplant evaluation at Tampa General Hospital, I was informed by the financial coordinator that because I did not have a secondary, and due to my high share of cost, I would be required to have $12,584 in savings. This figure reflected the $4,700 “doughnut hole” in my part D prescription coverage plus 6 months of the $1314 share of cost required before Medicaid would begin covering additional medical expenses. As you can imagine, this news left me feeling deflated. I had no clue how I would raise that kind of money when I couldn’t even qualify for a secondary insurance plan! However, I was not ready to throw in the towel and I began raising money using a non-profit that specializes in fundraising for patients in need of organ transplants and those who’ve suffered from catastrophic illnesses or injuries.
6 years later, life would be easier with a secondary. I still have quite a bit of monthly medical expenses and my dialysis treatments are only covered at 80% leaving me on the hook for the rest. A secondary plan would greatly reduce my monthly responsibility and afford me the luxury of being listed in multiple states which would greatly increase my chances of getting a new kidney."
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