In August of 2015, Nathan Kucera, only 27 years old, had another MS (Multiple Sclerosis) relapse. It was his third major relapse in just over one year, and his second one in just over three months. These relapses occurred while being on a disease-modifying medication meant to slow the progression of the disease and prevent flare-ups. This was a strong indicator that the standard treatment was ineffective for Nathan. The number of relapses and new lesions discovered on his brain and spinal cord showed a more aggressive disease than originally thought.
But this did not mean giving up. Nathan discussed his options with his doctors and learned of a promising medical treatment. He contacted the program administrators, submitted to multiple tests and examinations and was accepted into the Hematopoietic Stem Cell Transplant (HSCT) Treatment trials run by Dr. Richard Burt, M.D., at Northwestern University in Chicago. This treatment is an advanced procedure that, while still experimental, has shown in Phase II trials to cure the disease 80% of the time, and the other 20% have drastically reduced disease activity. HSCT is the most aggressive action that exists for stopping the progression of Multiple Sclerosis. Because Nathan's disease was progressing so quickly, he desperately needed this transplant. Without it, his health would have continued to decline and his quality of life to decrease dramatically, progressing ultimately to an early death.
However, Blue Cross Blue Shield of Illinois (BCBS) would not and will not pay for the treatment. All attempts and appeals have been denied. The fight to have the insurance companies approve this procedure began as soon as Nathan was accepted for treatment, and continues until today. They are refusing this $125,000 treatment as they claim that it is "experimental" and "unproven." They claim this even as hundreds of people with MS have been helped so far, even as there have been many times in the past where insurance has approved the identical procedure.
As the fight with BCBS raged on, Nathan was feeling like he was out of options. Fighting insurance can take months or years and meanwhile the MS continued to do its slow, cruel damage. The only option was to get the procedure done immediately, which meant paying out of pocket.
In September of 2015, Nathan began the process for stem cell transplant. This was made possible by an extremely generous friend. It remains our hope that BCBS will cover this treatment so Nathan will be able to pay for the treatment in full, but we are also fundraising because the insurance is not likely to come through.
We hope to continue the fight against MS and other autoimmune diseases beyond paying for Nathan's medical bills. We want to take the fight to the insurance companies and to our legislators. We want to raise awareness about the fact that life and death decisions are balanced against a bottom line. And most importantly, we also would like to assist others with autoimmune diseases who need HSCT and cannot afford this life-saving treatment.
Please contact Nathan or myself if you have any questions or would like to discuss aspects of our mission in more detail.
Bill Kucera is a resident of Oak Park.
Answer Book 2018
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