Guest Post: Scott Estrin on #DiabetesAccessMatters

We will be sharing stories about access and the issues patients have encountered in getting the diabetes supplies, medications, and services they need. Scott, advocate blogger at Rolling in the D, gives his thoughts and comments about access by sharing his story.

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Last year, I tried (unsuccessfully) to upgrade to a new insulin pump/CGM combination. My insurer was known for denying such requests as they were deemed “experimental”, but I believed to have sufficient justification so I pursued trying to obtain the device.

Pump Denial

My first battle was with the manufacturer itself, who knew that this claim would be denied and didn’t want to participate in the battle – I was encouraged not to fight it and to simply buy the pump outright, in all cash. I refused, and instructed the representative to submit the authorization-request to my insurance. A month goes by, and I found out that the representative ignored my wishes and did NOT submit it, because she knew it would be denied; it seemed she couldn’t be bothered with the hassle.After finally getting the authorization-request submitted, I got a denial in the mail, as expected. The denial letter instructed me how I could appeal, and separately how I could obtain information used in which to reach the conclusion of a denial. The appeal would have been rather useless without knowing the basis of the denial, so I made that request. After months went by without a response, I attempted, numerous times, to call my insurance company. I was transferred to fast-busies and disconnections, and referred to call incorrect phone numbers.Eventually, I had to choose the automated options to identify myself as a healthcare provider, and then to plead with the representative not to transfer me back to the black hole I had been in previously. Eventually, after re-sending my request, I got the information in the mail.The basis for the denial was rather weak. My endocrinologist chose not to participate in the appeal-process. His role is to practice medicine, not to process insurance appeals. I could accept his reasoning, and knew that I could formulate a strong appeal on my own. I rebutted it, point-by-point, in a nine page letter with documentation to back up each one of my assertions.

Appeal with Published Data

My appeal was based on quantifiable fact and written, published data -- not on pleas or emotion. I was denied again, for the same indefensible reason. But by this time, I’d had enough. The process was so time-consuming and mentally draining, that I chose not to continue with the appeal process.I felt defeated, knowing that “the system” won; however the relief I felt at finally closing the book on my appeal-process counterbalanced that feeling of defeat. Fortunately, during this time I had found an alternate product that made me equally, if not more, happy. Next time, I may not have that alternative. That is why I am telling this story.Doctors are trained to prescribe medical treatments. Insurers aren’t. When insurers contradict the professional, trained opinions of the professionals who provide care, they threaten the health and well-being of their clients. That is not acceptable and the practice has to be stopped.Scott has been living with Type 1 diabetes for 35 years. Described by his friends as “always thinking”, he constantly seeks to understand why things are the way they are and how they can be made better. Though diabetes is a part of his life, he does not let himself become consumed by it; that honor goes to his wife, his two sons, and his love for ice hockey, of which he is a youth-team coach. Scott and his family live in New Jersey.

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If you would like to share your story about access and why #diabetesaccessmatters to you and your family, please do so here. Our voices and our stories are powerful. Share yours.