120 Pages of Documentation Suddenly Appeared



In August of 2022, our doctor submitted documentation to support his off-label request for ME’s treatment. The denial letters did not line up with what is expected for an off-label approval process . We knew for a fact our doctor submitted exactly what was needed for the off-label review process. 
Where was this documentation he sent in? And why was it not being put through the full review process? 

Over and over again, as I would call daily to see if these documents were put through the process, Cigna, Express Scripts, and Accredo employees confirmed that they were never submitted. 


Instead, for our supposed “second appeal” (I’ll share how we found out the first appeal never happened another day.) the  HR team told us to send MORE documentation. 


Since I absolutely knew the initial documentation had never gone through the full review process, and our doctor confirmed multiple times that he sent it, I asked instead that they submit what was sent by our doctor in August. 


Documentation, that no one in the process ever saw once. 


Documentation, that was needed to properly review ME’s case. 


Documentation, that the Accredo pharmacist said “never got there”, so, as she said, “a blanket denial was done” instead. 


For FOUR months, this documentation sat on someone’s desk. 


From August through to November, we waited, desperately waited, as ME’s oxygen continued to drop, to hear if ME’s much needed treatment was approved. 


Thankfully, the State of Tennessee, thanks to the Tennessee Justice Center, recognized what was happening, and overturned IP’s decision. On November 2, 2022, ME received her first life saving treatment. 


It would take IP until December 20, 2022, to finally submit the documentation that ME’s doctor submitted all those months ago, in August of 2022. 

It would later be documented that this all fell squarely on IP’s shoulders. No one else’s. 


We wait to hear that someone is held accountable. 


We thank ME’s Katie Beckett team of Respitory therapists, nurses, and home health professionals for getting us through this nightmare, and  quite frankly, saving ME’s life. 

And a HUGE thank you to Dr. Hoy and his team for all they did above and beyond the call of duty!!! 

They are all our heroes!!! 



This entry was posted on Wednesday, April 26, 2023. You can follow any responses to this entry through the RSS 2.0. You can leave a response.

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