For those considering Proton Therapy/Insurance denials

skidog

I've had a number of folks contact me via instant message regarding my experience with Proton Beam rads. Shortly after my treatment,  I was asked to provide my story to The Alliance for Proton Beam Therapy Access Association. Sadly, only about 5% of folks wanting/needing radiation that helps protect vital organs in and around the head and neck with limited long term side affects, are able to get Proton beam radiation. I'm two years post treatment. Only lingering side affects are a slight dry mouth at night when I sleep. Granted, my SCC HPV Tonsil cancer was caught early..stage 1. but many others share similar stories of the benefit of Proton Beam rads. Please see below. I realize treatment optios are varied and one size does not fit all. many on this board have had great success using IMRT/Chemo/Surgery.  My purpose in sharing this is to let folks know that even if your insurance provider says they wont cover (out of network) proton Beam ..... like mine initially did...we were able to overcome their objections and get them to pay in full (minus deduction). see below..

 

Cancer: Squamous Cell Carcinoma Head and Neck
State: Wisconsin
Age 53

“If you find yourself in the same position I did, just remember: Keep fighting, and don’t accept no for an answer.”

 

Keep fighting, and don’t accept no for an answer. That’s what I want to tell anyone fighting for access to doctor-recommended proton therapy. I learned this firsthand through my own battle with my insurance company. My fight began in January 2018, when I found a lump on my right lymph node. It seemed odd, so I went to get it checked out. That’s when the doctors confirmed I had a type of throat cancer, Squamous Cell Carcinoma, with the primary tumor in my right tonsil.

I immediately took matters into my own hands and began researching this cancer and different options for treatment. I found out about proton therapy through my search. Of my options, surgery seemed excessive and chemotherapy wasn’t the right fit. What I read about proton therapy convinced me that it was a great choice. Given the location of my tumor in my right tonsil and right side lymph node, the possibility of proton therapy to precisely target my tumor while avoiding healthy tissues in my head and neck really stood out. My mind was made up.

I went to the Mayo Clinic in Rochester, Minnesota, and was relieved when my doctor confirmed my thinking. During this visit, I learned much more about the benefits of proton therapy over traditional radiation for head and neck cancers of the type I had.

I traveled to Rochester because none of the hospitals near me offered proton radiation treatment. That meant my treatment was out of network, and worse, my insurance company, Quartz, denied my initial request for proton therapy. They claimed my doctor-recommended treatment was experimental. My doctor disagreed and sent a letter to the provider, explaining that their position was outdated and that proton therapy is now standard treatment for head and neck cancers. The letter wasn’t enough.

Quartz required us to meet with a nine-member appeals board. My doctor and I would only have twenty minutes to present our case and convince this board to reverse the insurer’s initial denial. My doctor explained that the insurance company was using outdated information from 2014 that had since been updated.  We stressed to the board members that proton therapy is FDA-cleared and covered by Medicare as an effective cancer treatment.

I’m so glad we put up this fight because ultimately, the insurance company relented. Three days later, Quartz informed us it was reversing its denial. My treatment would be covered in full. I was elated! This whole ordeal took about three weeks, delaying my treatment and giving me additional anxiety about my situation. My doctor at Mayo said only about five percent of patients receiving radiation get proton therapy. This is tragic – especially if it’s the result of an insurance company’s improper denial, as was my case.

Now that my insurance battle is won, I can finally begin my proton treatments. I couldn’t be more pleased with our efforts and the insurance company’s change of heart. If you find yourself in the same position I did, just remember: Keep fighting, and don’t accept no for an answer.

wbcgaruss

Congratulations skidog

Glad you persevered and were successful and thanks for sharing your story. Also, this may be a step making it easier for folks in the future to get approved by your insurance company. I am surprised these insurance companies seem behind the times a little. Proton is to up and coming thing for many cancers. Especially tumors near organs that need to avoid damage. I think it should be the first considered treatment for anything around the H & N area unless another treatment is deemed OK as far as damage in that situation. Simply because as many of us know firsthand there is a lot going on in that area such as swallowing, taste buds, saliva production, dental health, and many other functions thus I think proton will almost always give the least damage. I can understand they still have to use the regular radiation treatment on a more advanced cancer which is large or advanced and it needs a large coverage or what they might call the blanket approach. Take Care-God Bless

Logan51

skidog

Great post/thread start. I'm the one with Nasopharyngeal who for some reason got 68 Gys to the base of my throat and have been Feeding Tube dependent, starting around 10 years after tx. I was unknown Primary, so not sure I would have qualified, but photon strikes me as a great option if One has need for a 2nd round of Rads/the C comes back, also.

 

Thank you