Brent Niese

By proton-admin | May 24, 2017

“I strongly believe it should be the insurer’s duty to help facilitate optimal cancer treatment. The most troubling aspect of Brent’s insurance denial experience is that the additional cost of proton therapy treatment was not much more than the traditional radiotherapy the insurance company had approved. The additional cost would have been a drop in the bucket for a large insurance company. That seems like a worthwhile investment considering Brent is a 23-year-old man in the prime of his life.”


At just 23 years old and while enjoying his final year as a mechanical engineer major at The Ohio State University, battling brain cancer was the farthest thing from my brother’s mind. Neither of us could have imaged a cancer diagnosis and a fight with our insurance carrier for life-saving care.

However, on a seemingly normal day of coffee, classes and studying, Brent suffered a seizure in his house near campus. His roommates acted quickly to get him to the emergency room where a series of scans revealed the reason for his seizure – a brain tumor.

As a healthy, active college student, the diagnosis took Brent and our family by complete surprise. But shock quickly turned into action. Brent and his medical team immediately scheduled surgery to remove as much of the tumor as possible.

To say the surgery was a success would be an understatement. Brent had complete tumor resection and no neurological deficits. He was home after two days and back in class the next week. He never missed a beat.

But elation quickly turned to worry when we learned that instead of being a grade one or two tumor as previously predicted, his cancer was rated a grade three tumor, meaning further treatment would be necessary.

Our family immediately began to seek out second opinions and research treatment options, which led us to the Proton Therapy Center at MD Anderson Cancer Center. Upon his initial consultation with a radiation oncologist, Brent learned that he was an excellent candidate for proton therapy due to his age, previous complete resection and general prognosis.

However, a massive barrier presented itself – our health insurer did not agree with his physician’s expert medical opinion. The insurance company flat out refused to cover proton therapy, because they decided traditional radiation would suffice.

This was the insurer’s immediate and unwavering decision, even though a team of doctors agreed Brent would respond well to proton therapy and research demonstrates a lower rate of immediate and long-term side effects associated with proton therapy. This is an extremely important consideration given the anatomical location of Brent’s cancer, as well as his young age.

While we were fighting the insurance company, the small window of time Brent had to begin his next phase of treatment was closing. We had to quickly decide how to proceed based on the insurance denial.

Having appealed and petitioned the insurance denial to no avail, and with no time to waste, we decided proton therapy was the best course of care to ensure an optimal clinical outcome while also protecting Brent’s quality of life for years to come. Thankfully, as my parents were struggling to determine how they would pay for Brent’s proton therapy, the proton center offered an arranged payment plan so that he could immediately start treatment.

I strongly believe it should be the insurer’s duty to help facilitate optimal treatment. The most troubling aspect of Brent’s insurance denial experience is that the additional cost of proton therapy treatment is estimated at merely $10,000 more than the traditional radiotherapy the insurance company approved. While $10,000 is a lot of money to most, it is a very small investment for a large insurer to make in the treatment of a 23-year-old man in the prime of his life.

Brent, my family and I have no plans to give up. Brent has been handed a diagnosis no one his age should have to face. It is inspirational to watch the way he has carried himself as a resilient and determined young man. We will continue fighting the insurance company to cover the cost of proton therapy while Brent continues to fight cancer. This fight is not only for Brent, but for others who are faced with the same barriers, who ultimately may not be able to proceed with proton therapy – a superior form of radiation therapy.