Not sure how it all happened. Honestly, I think it was a fluke.
We went through so much to approve the original denial for IVIG to treat my son’s PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep).
At the beginning of the year, his specialist said, “It’s a new year and let’s just start over.” I was all for that! The specialist submitted a new order with a dosage change and it was suddenly approved. No fuss or muss!
At the end of last year, I spent so much time obsessing about the appeal. I spent two months crafting an appeal that literally turned into a Ph.D. dissertation-level paper.
Writing it was so much more involved than I had originally imagined. Lots of research on PubMed, PANS, PANDAS, and encephalitis websites. Combing YouTube and Facebook groups on how to actually write an insurance appeal that would give us a fighting chance. Plus, I didn’t want to make any mistakes. It had to be perfect if we wanted to move forward.
The appeal had two versions. One for my employer. And one for the external appeal. Basically, the same paper but they have slight differences due to the different audiences.
I sent the one to my employer. If your insurance is self-funded, it means that the insurance company just handles the administration. It’s the employer who pays the bills. And because of that, the employer can make exceptions to the rule. It was returned stating that it needed to be denied from the external appeal before the committee with our human recourses department would review it.
Okay, I get it. But I only knew that I could also ask my employer by word of mouth. It is not written anywhere that this is an available option. It also took some digging to find the contact info.
So I was about to send it to the external appeal and then his doctor wanted to start over. I was completely okay with that because the new dosage was exactly the same as the papers I was using as evidence to appeal. And if it got approved but was not the optimal dosage, well, then, we could be wasting even more time.
What was the difference between the previous denial and this easier approval? I felt I needed to know.
I asked for more information from both the infusion company and the doctor’s office. It turned out the infusion company sent in the order for pre-approval to my health insurance only. The insurance company returned a denial but did not say, “Hey, you sent it to the wrong place. This is a medicine and it needs to go through the pharmacy benefit insurance plan.” The infusion company was not aware that there was a different place to send it to. I find this a little strange, as the only thing they do is infuse high-dollar meds. Hmmm…
The doctor’s office sent the new order only to the pharmacy benefits. They didn’t send anything else to defend the reason for the order. And boom! It was approved.
So here is the lesson I learned. Know the process. Know who is doing what. Get their names and contact info and ask for regular updates on what is happening. I hate micro-managing people and most don’t like being micro-managed. But if their updates are not going to jive with what I know is the process, then I will have to do what I have to do.
Next up… IVIG 🙂
