“We need to stand up and hold insurers accountable for ignoring qualified physicians’ advice and blocking patient access to cancer care. This isn’t over for me. ”
I would say that I have lived a privileged life – I was raised by a caring family, I was fortunate enough to have been given all the tools I needed to thrive and flourish into the person I am today, and I have grown up with near perfect health.
Unfortunately, one unlucky abnormality in my body has thrown all of these favorable fortunes into disarray. Late last year, I was diagnosed with a grade 3 Oligodendroglioma, a type of malignant brain tumor.
Thanks to my excellent team of doctors, I quickly underwent surgery to have the majority of the tumor removed. However, due to the infiltrating nature of these types of tumors, radiation and chemotherapy are a necessary follow-up protocol.
My doctors recommended that I receive proton beam radiation therapy because it would target the bad tumor cells and decrease the amount of excess radiation affecting the rest of my good brain cells – reducing my risks of developing future complications and ensuring a higher quality of life. It would also significantly decrease the chances of my cancer recurring.
But my insurer, Premera Blue Cross, had other ideas. They denied my treatment on the grounds that it wasn’t ‘medically necessary.’ That is, it didn’t meet their internal policy criteria despite the fact that a team of oncologists – some of the best in the world – all agreed that proton therapy would the best type of treatment for me.
Despite this devastating set back, I was not ready to give up. My wife and I are planning to start a family and I am not prepared to accept a lesser treatment that doesn’t give me the best chance for a long, healthy life.
With the help of my doctors, to whom I am incredibly grateful, I appealed the denial multiple times. Apparently, the expert opinions of my oncologists, who know my case better than anyone else, matter less than my insurer’s vague and arbitrary coverage guidelines and ‘independent experts’.
Fortunately, after my story aired on our local news station, Premera finally approved my proton therapy treatment! I am grateful I got approved, but it should not take me going public with my story to get to this point.
This experience has opened my eyes to the challenges patients needing proton therapy face on a daily basis. There must be a fair and timely process for determining coverage that is based on personalized clinical expertise rather than arbitrary guidelines. We need to stand up and hold insurers accountable for ignoring qualified physicians’ advice and blocking patient access to cancer care.