I think a good way to start this endeavor is to explain our current situation, and how we came to need the help of a fundraiser. Both my wife and I are employed full time and pay monthly premiums for our employer's insurance. Liza works for the State of Texas Department of Family Protective Services, and I work for the University of Texas Division of Housing & Food. We get what we considered to be very good insurance through our employers (Blue Cross Blue Shield of Texas); and while (like any insurance company) we've had to wrestle with them on nearly every bill, they have been keeping us out of the poorhouse when it comes to medical expenses.
I also qualify for Medicare due to the nature of my disease (it falls under the category of 'End Stage Renal Disease' or ESRD). Now normally we wouldn't have thought that Medicare would be necessary, since we were doubly insured through out work - but neither my insurance, my wife's insurance, nor my Dad's insurance are legally allowed to pay for the living donor (my Dad) part of the transplant surgery and care. Transplant patients are required to enroll in Medicare who then covers the donor's surgery costs - an excess of $100,000.
So since May of 2008 I've been covered by my employer's insurance, my wife's employer insurance, and Medicare. We were under the impression that Medicare was only necessary as a means to pay for the donor's part of the transplant care. After about a year we allowed Medicare part B to drop by no longer paying their premiums. Part B is the division of Medicare that pays for outpatient procedures, doctors visits, and prescription medication - all things that were covered under my employer's insurance. We felt there was no reason to burden the Federal system unnecessarily, so we let part B lapse.
Apparently that isn't something we should have done. You see, after a period of 30 months after the transplant, Medicare automatically takes primary responsibility of a patient's insurance claims. This is due to a coordination of benefits deal Medicare has with employer insurances to help spread out the costs. This is something I'm sure we were told along with an entire encyclopedia's worth of other medical, insurance, and general health related information during my initial hospital stay back in 2008, but had since forgot.
So now it was November of 2010 and Medicare was suddenly our primary insurer, with our employer insurance taking over the secondary and tertiary duties. That would be all well and good if it weren't for the fact that we had let part B expire. Now we were eligible for part B, but were not enrolled. This led to a situation where our employer insurance would refuse to pay for outpatient procedures, doctors visits, and medications because those things should be paid for by Medicare part B. We thought 'oh well, we'll just re-enroll in Medicare part B!' Well not so fast. You can only enroll in Medicare part B between January and March, and part B would not go into effect until July even if we did enroll during that period.
This meant that I would be essentially uninsured for outpatient procedures, medications, and doctors visits until July. I don't know how familiar you may be with the costs of health care, but that would be astronomical. One of the anti-rejection medications I need to take in order to keep my kidney from dying costs more than $3,000 for a one month's supply. Doctors bills and outpatient procedures range from about $500 to $10,000 depending on the work done. Even with our insurances working as they should, we have approximately $300 out of pocket medical expenses every month. Without the benefit of insurance we would have to be millionaires in order to survive, and even then we wouldn't be millionaires for very long.
This would all be a lot to worry about if all was well, but my Dad's gift of a kidney from 2008 was failing and going into acute rejection. I've been getting progressively sicker since about July of this year, and that was all coming to a head at the same time these problems with insurance were surfacing. In the first week of November the doctor told us that all the treatments they attempted to halt the rejection had failed and it was time for a new transplant. When the transplant workup started and our insurance was reviewed, we were told that we essentially had no insurance, and it was becoming clear that I was going to need a new kidney very soon. In the beginning of December, with my health steadily failing, the doctor ordered that I be put on emergency dialysis.
The transplant clinic staff told us that they thought dialysis would be covered by the Texas Kidney Health Care program, a program under the Department of State Health Services. When patients with no insurance start dialysis they apply for Medicare which then kicks in after 3 months and does not pay retroactively. The Kidney Health program then picks up the first three months of costs. We scheduled a surgery for dialysis 'port placement', but when we started asking them who would be covering the costs, they didn't know and we had to cancel the surgery and postpone the emergency dialysis. The dialysis was, and remains, on hold until we can figure out who will pay for it.
My transplant nurses had to call a supervisor at the Social Security office to explain that waiting until January to re-enroll in part B would not be an option for me, as I would not live until July to get treated. Fortunately we may have struck a deal with Medicare that will allow us to pay back premiums and get us reinstated in part B retroactively starting December 1st. I have my loving Mother and Father to thank for loaning us the money to pay Medicare what essentially comes down to a ransom for my life, an amount approaching $3,000. My parents exhausted their savings in order to pay this amount, my wife and I are barely making ends meet, and we just went through nearly an entire month of medical procedures and appointments that may not be covered by any insurance, which means we'll carry financial responsibility for all of it.
We're still waiting to see if Medicare part B will really actually be reinstated and pay for dialysis before I can get the treatment I need. Until then we're hoping my health doesn't deteriorate to the point that I need to be hospitalized, because we honestly have no idea how we'd pay for it. We're doing everything we can to keep our heads above water and avoid filing for bankruptcy. As a last resort, the hospital financial coordinators suggested we start a community fundraiser with the National Transplant Assistance Fund. We never thought we'd be asking for charity from our family and friends, but sometimes you have to realize when you can't do things alone and there's no shame in asking for help.