Karen and Larry Seibert

By proton-admin | December 7, 2018

“I promised my husband that I’d continue his fight and I’d never stop until insurers are held accountable.”


Until my husband Larry was first diagnosed with esophageal cancer in 2013, he had never been sick a day in his life. He was a concert bassoonist and music was his life’s passion. I’d joke that if that instrument was a woman, I would have been jealous.

For three years following his first diagnosis, Larry was the picture of health. He was cancer-free following six weeks of radiation and chemotherapy. But in 2016, a routine check-up found that his cancer had returned in his esophagus, a lymph node, and left lung. We were in disbelief.

Larry and I were dismayed by the thought of being back on an emotional roller coaster of fear and dread. Larry’s doctor was adamant that he should have an esophagectomy and surgery to remove the lower left lobe of his lung. We had fought the surgery during the first go-round because it would end his ability to play the bassoon but now, we found ourselves face to face with our worst fears.

Larry introducing the bassoon to his grandson Ryan’s class.

 

The esophagectomy would have resulted in the removal of Larry’s entire esophagus and the upper part of his stomach. That would mean an extensive recovery. Not to mention that the very operation the doctor claimed could save his life would virtually eliminate the music for which his heart beat.

The weekend after the diagnosis, a friend mentioned that his father had a Barrett’s esophagus and visited a doctor in Knoxville, Tennessee who made all the difference. We both thought this might make a difference for Larry, too, and decided to make the trip.

We found out during our visit to Provision Healthcare Proton Therapy Center that Larry was a candidate for proton therapy. The treatment would precisely target the bulk of its cancer-fighting proton energy on the cancerous cells while sparing Larry’s breathing capacity and avoiding the need for surgery. We were sold the minute his doctors said Larry would be back playing the bassoon in no time.

The Provision staff warned us that insurance companies often deny the treatment, but we were assured that fighting insurers for a patient’s access to proton therapy was nothing new. Plus, it was a no-brainer: proton therapy was both cheaper than an esophagectomy and was in Larry’s best interest. Unfortunately, that didn’t matter to our insurer Cigna.

Thus began a fight that would last six months and would take an unimaginable toll on Larry’s life. The denials from Cigna just kept coming. Our doctors did everything they could but our insurer had other plans. The Cigna representatives who reviewed the appeal didn’t specialize in Larry’s cancer and were not knowledgeable about proton therapy. In fact, the second person from Cigna to review – and again deny – Larry’s appeal was a gynecologist.

Larry and his grandson Micah, who shares his grandfather’s love of music.

During one of our visits to Provision, they suggested that we call our state department of insurance and file a complaint against the insurance company as well as call or write our members of Congress and anyone else we could think of that might be able to help our cause. I made it my mission to contact everyone I could. I filed a complaint with the Department of Insurance, as suggested, and crafted a letter to every senator and member of Congress in Ohio as well as the vice president of the United States.

I did not think anyone would read my letter, let alone do anything to help, but I had to try. Three days after sending the letters, I received a phone call from Senator Sherrod Brown’s office.

The staff in his office asked that we follow up after the Department of Insurance reviewed the claim. So we waited. Finally, the department decided that Cigna had done nothing wrong but told us that they understood our plight. That’s when Senator Brown’s office said they would continue to fight for us and wouldn’t let Cigna off the hook.

Following three more denials and many frustrating conversations, we were down to the second and final external appeal. Finally, on August 10, 2016, we won our fight against Cigna; Larry was approved to receive proton therapy.

Winning this fight was bittersweet. It took so long to get the approval that, in the interim, Larry’s cancer had metastasized to his bones. It was a hard pill to swallow, especially when Larry’s oncologist said that his cancer may not have spread had his treatment not been delayed. Larry was a fighter and we began proton therapy as soon as we could, but it was too late. Larry lost his fight when the cancer spread to his brain. He died on January 28, 2017.

I promised my husband that I’d continue his fight and I’d never stop until insurers are held accountable. When you love someone as I loved my Larry, you are willing to fight to the ends of the earth, and that’s what I’m prepared to do.