“Cancer patients deserve fair, timely, and transparent access to care. Now that I’ve experienced the power of protons firsthand, I plan to advocate for greater access.”
My story began with a sore throat – one that lasted over three years! The problem went undiagnosed until I began coughing blood one night. An EMT found a mass protruding from my tongue. At 42 years old, I was diagnosed with tongue cancer.
My diagnosis came right before Christmas in 2017. It was no gift. The next few weeks were confusing as I tried to understand my diagnosis and treatment options. I started reading online sources and quickly became overwhelmed by all the information about different treatment options. Thankfully, the father of a friend who battled cancer introduced me to proton therapy. From visits with several specialists, I learned that traditional photon radiation could leave me with life-altering side effects, ranging from impaired vision to the possibility of facial deformities and the inability to eat solid food or even speak.
Proton therapy had the ability to precisely target my tumor while sparing the surrounding healthy tissues, meaning minimal side effects. The choice was easy.
Three days before my first proton treatment at Mayo Clinic in Rochester, my insurer denied me access to my doctor-recommended proton treatment and insisted I receive photon radiation instead.
At Mayo Clinic, the costs for proton and photon radiation were the same, but a lifetime of side effects from photon radiation would likely cost my insurer more over the long run. There was no excuse for their denial. My doctors and I appealed the decision immediately. I was concerned about the consequences of delaying treatment, but my oncologist remained upbeat. She assured me she wouldn’t stop fighting.
She wasn’t kidding. My doctor spent over 50 hours fighting to overturn the denial. I didn’t fully appreciate how broken the appeals process was until my doctor told me about a peer review she had with a doctor from my insurance company who told her, “It’s my job to deny this regardless of what you say.” That’s when it became clear that I had to take on this fight myself.
I reached out to state and federal representatives and the governor of Illinois for help. My Illinois State Representative Mike Unes got back to me within hours. I heard from Representative Unes and his staff daily. They were engaged in my fight every step of the way. Other politicians, including my U.S. Representative Darin LaHood, kept in touch frequently.
I had an army of support behind me that helped elevate my fight to the Illinois Department of Insurance. But at this point, my doctors wouldn’t allow me to wait any longer to begin treatment. So, I would have to start treatment with the uncertainty of how to pay for it.
At 5 o’clock on the morning of my first proton treatment, an insurance representative at Mayo got a phone call from the Illinois insurance commissioner, saying my access to proton therapy was approved.
I feel strongly that the tenacity of Representative Unes and others fighting for me influenced the company to act. It shouldn’t take the intervention of elected officials to force an insurer to do the right thing.
Insurance is a business. It is an investment that people make for their futures; it’s gambling on life. The “house” is always favored, yet, the responsibility the insurer has to its clients should not dictate the type of treatment they receive.
Cancer patients deserve fair, timely, and transparent access to care. Now that I’ve experienced the power of protons firsthand, I plan to advocate for greater access. I’ve gotten to know my elected officials and plan to call on them to pass legislation that’ll hold insurers accountable.
It has now been a full year since my last proton radiation treatment. My one-year PET scan in early March showed that I remain cancer free. I have no appreciable side effects from the proton radiation treatments. I’m still waiting on a “thank-you” card from my insurer for saving them so much money.