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. 

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!!! 

1. Get a copy of the plan from your HR. The real plan. If your company is fully funded it won’t be branded by a third party health care logo. 

5. If they aren’t following their actual plan, call EBSA (ERISA  1-866-487-2365) do what the EBSA investigator says. 

6. Things to watch out for:

~Watch out for a self funded health care plan giving a  denial because your prescription is not FDA approved. Up to 40-60% of drugs are administered through the off-label process. Your doctor will know if your medicine falls under off-label. Your doctor also knows the off label process, and should be prepared to do it. 

~If you have more than one insurance plan, some companies will deny and run you through a series of appeals, and then your secondary  picks up the claim. This is an indicator that something is wrong. This is a red flag, and you should contact EBSA and your secondary insurance to report this. 

-For those of you who like speaking to managers when something seems wrong, speaking to your third party administrator’s top manager is not effective, unless it’s a simple paperwork problem. In our case, the SVP of Human Resources is the actual plan administrator. That position has the final say. The person who has this role  is listed in the actual plan, and that person is required to follow the plan in good faith. 

If you are concerned about any or all of the above or it has happened to you, you can still report, and likely still appeal. Simply call EBSA (ERISA 1-866-487-2365).