u/Apprehensive-Map2025

I don't even know if anyone can help me here, but I'm hoping someone can even give me even a bit of information that could help.

In the fall of 2024, my 8 year old had been through multiple treatments for IBS and FAP (Functional Abdominal Pain). She was losing weight rapidly and missing school. In a last-ditch effort, her pediatric gastro recommended a medical device. We called BCBS, got approval numbers and a verbal "this is 100% covered". The doctor's office has multiple dates/times when they reached out to them, along with paperwork with approval numbers and codes. A few months after the procedure, we learned that the procedure would not be covered and fell under "experimental" treatment even though:

1. We were told it was covered and have reference numbers documenting that along with dates, times, and who we spoke to.

2. The doctor's office was told it was covered, and also has numbers documenting it along with dates, times, and who they spoke to.

3. It fell within her diagnosis and age range and had FDA approval.

We had two internal appeals with BCBS plus a final hearing. They upheld the denial. The hospital has repeatedly said it's unfortunate, but health insurance companies have the right to change their minds post-procedure. The hospital is still expecting payment.

We've filed a complaint with the NJ Department of Banking and Insurance and an external appeal.

If anyone has any idea of what we would do next, we would appreciate it.

My original post is below. Last week, we had the final hearing via telephone with BCBS. I sent all documents including FDA approval, doctor's letter of medical necessity, and all of the communication we had with BCBS. This included approval numbers, statements from the doctor's office that it was 100% covered, etc. Layer upon layer of proof. It was still denied.

The hospital is willing to reduce the bill by 40%, but it's still an unaffordable amount for us. And considering it was "100% covered" it's just on principle that we shouldn't be paying.

What are my next options? We filed an external appeal with the New Jersey Department of Banking and Insurance. Is there anything else besides the external appeal?

In January of 2025, we were at a low point with my 8 year old daughter, who had severe gastrointestinal issues. She had gone through multiple medications, nothing was working. She was missing school, sports, and life as the pain was so bad. Her gastro suggested a device called an IB STIM. We went through the process with insurance and was told it was pre-approved by the doctor's office. She had the device and it worked wonders.

A few months later, we received a bill for $3300 because the insurance denied it due to the treatment being "experimental" or "investigational". The doctor's office said verbally it was pre-approved and didn't understand why we were being charged as the device is FDA approved and has scientific research published through peer-reviewed medical journals abuot the efficacy of the device.

We filed a first level appeal and got denied, then second level appeal and denied. With both appeals, the doctor sent over her health records, a letter of medical necessity, and the history of things we tried. Finally, I called the state board of insurance and now we have a hearing with a board made up of individuals who have not been part of the process prior.

What do I expect at the hearing? I have a choice to go in person or by telephone. I just want to make sure that I know what to say/do/present as we can't afford this $3300 bill and would've never done the treatment had we known.