“My insurer – who should be, above all else, interested in my health – would have left me for dead. In short, fighting cancer is hard enough, I shouldn’t have to also fight my health care provider.”
When I first started experiencing headaches and nosebleeds, it never occurred to me that anything serious could be wrong. At age 52, I had never smoked or drank, I had been a college athlete, and I had always lived a healthy lifestyle. But when I began passing out, I knew it was time to investigate.
After many rounds of testing, my doctors delivered a double whammy: I had both leukemia (a cancer of the blood), and a large tumor deep inside my head, growing into my parotid gland.
Because the type of tumor I had was exceedingly rare – affecting about 1 in every 5 million patients – my doctors sent me to see a specialist. There, I learned that I had no time to waste. I urgently needed chemotherapy to treat the leukemia, surgery to remove the large, aggressive tumor, and a follow-up form of radiation to kill any remaining cancer cells left behind.
Although surgeons were able to successfully remove a malignant carcinoma the size of three golf balls from my parotid gland along with 36 lymph nodes – the deep location and size of my tumor made it impossible for doctors to remove all of the affected surrounding tissue into which the cancer had spread. My doctors informed me that my only chance of surviving and maintaining any quality of life, was to quickly receive intensive proton beam radiation therapy. The doctors said that the alternative – traditional radiation– would “melt the side of my face,” likely causing me to lose speech, facial movement and my ability to swallow. It would leave me permanently disabled.
But even with two cancer diagnoses and a huge surgery behind me, it was about to get worse. My insurer – Anthem Healthkeepers (BCBS) – flatly refused to cover the costs of proton beam radiation therapy.
Despite my physicians’ urgent pleas, Anthem maintained that proton treatment is “experimental and investigational” and refused to cover it. During a peer-to-peer review session, an Anthem representative participated only to crassly read a denial paragraph from their policy brochure over and over again. My physicians were appalled by both his attitude and complete lack of appreciation for the urgency of my situation.
With no other option, I went ahead with the proton beam radiation therapy –paying $80,000 up front and out of pocket before treatment began and financing the remaining cost through the help of a payment plan. For nearly eight weeks, I received daily treatments of proton radiation and chemotherapy, which has attenuated the remaining cancer in my head and cured me of the leukemia. I have lost 85 percent of my hearing in one ear and my salivary gland, but thanks to proton therapy I do not have any paralysis. I am able to function and live normally, but had I received traditional therapy, I am confident my side effects would be much more severe resulting in permanently disability and loss of normal function.
The good news is that a neutral third party has reviewed my case and ruled that Anthem was wrong to deny coverage. They are now required to go back and cover the cost for my necessary lifesaving proton radiation. What is scary and unacceptable is that if I had not been able to pay upfront for my treatment and had waited until the appeal process was completed before starting treatment I would NOT have survived the cancer in my head. I would have died.
The grace and generosity of my caregivers during my battle still astounds me, yet, my insurer – who should be, above all else, interested in my health – would have left me for dead. In short, fighting cancer is hard enough, I shouldn’t have to also fight my health care provider.
My experience has emboldened me to stand up for others fighting cancer and hold insurers accountable for ignoring physicians and blocking patients’ access to the best, recommended, cancer care.