“My granular cell tumor was located behind my ear where the jaw, carotid artery, esophagus, brain stem, oral cavity—anything that’s important to me and to living a healthy life—are located. Proton beam radiation would target the tumor and not surrounding tissue, and to me was the clear choice. Unfortunately, my insurance company didn’t agree with me or my team of medical experts and denied coverage.”
At 56, I was living an active life as a freelance writer when I was diagnosed with cancer. My three children were in high school and college, and I was getting ready to celebrate the publication of my first book. The book release date, however, was overshadowed by a cancer diagnosis. A month or two earlier, I had noticed a small growth behind my left ear. It was suspected to be a harmless sebaceous cyst, so I didn’t think twice when it was removed. Weeks later, I was shocked when the pathology report indicated a malignant granular cell tumor, a very rare and intensely aggressive form of cancer.
In search of the best treatment available, I travelled from my home in Lafayette, Indiana to seek evaluation by experts at the MD Anderson Cancer Center in Houston, Texas. Due to my tumor’s location in the complicated head and neck region, and the potential side effects of conventional radiation treatment, my medical team suggested proton therapy, which would minimize damage to sensitive areas surrounding the tumor.
Proton beam therapy is very targeted and the right treatment for my head and neck cancer. My granular cell tumor was located behind my ear where the jaw, carotid artery, esophagus, brain stem, oral cavity—anything that’s important to me and to living a healthy life—are located. Proton beam radiation would target the tumor and not surrounding tissue, and to me was the clear choice. Unfortunately, my insurance company didn’t agree with me or my team of medical experts and denied coverage.
My insurer deemed proton therapy “investigational,” even though proton therapy is FDA-cleared, covered by Medicare, and recognized in the National Comprehensive Cancer Network guidelines for head and neck cancers. The insurer also declared proton therapy not medically necessary for my cancer.
Despite the insurance denial, I recognized the importance of treating my aggressive cancer quickly. To begin treatment when it needed to happen—and not wait the months it would take to get a final opinion from my insurer – my husband and I paid out-of-pocket for proton therapy while going through the appeals process with the insurer. I fought the insurance company on nearly a daily basis, the entire length of my treatment. The denial was ultimately overturned in external review the day before treatment ended. The external reviewer considered the medical details (which I’m convinced the insurer never did), deemed the treatment medically necessary, and the insurer was forced to cover my proton treatment.
While the denial did not really come as a surprise to me, because I had heard of poor insurance coverage for proton therapy, what did shock me was my insurer’s seemingly careless and evasive decision process, its complete disregard for federal regulation, and the numerous inexcusable factual errors made in communication during the appeals process. My insurer termed proton therapy a type of X-ray radiation (they are two completely different forms of radiation). The insurer completely misidentified the requested treatment (citing an MRI instead of proton beam radiation) and wrong part of my body (citing the spine instead of the head and neck). The denial letters were also riddled with grammatical errors that completely discredit the professionalism of the company.
The insurer also violated federal regulation, failing to comply with the mandated deadlines of an expedited review process. It delivered responses several weeks after the required 72-hour response window had passed. I was astounded to learn that there are no penalties for this conduct. Insurance companies have no reason to change their behavior, which is something legislators must address.
With proton treatment now behind me, I am grateful that I had the strength to fight for and win coverage of the necessary radiation, despite an insurer that argued otherwise. My own fight for coverage may be over, but I vow to continue to advocate for fair insurance treatment of other cancer patients, none of whom should be fighting anything other than their disease.