I feel like I am forging a path through the jungle. I have my machete, my bug spray, and a treasure map with a big “X” on it. But that’s it. No GPS. No voice telling me to turn left. No gas stations to ask questions. UGH!!!
Is there coffee?
So, let me update where we are now.
My son turned 20 years old recently. sigh… I don’t think I was really ready for THAT!
Well, anyway. We are currently trying to get IVIG approved to treat PANS. (If you haven’t read our PANS story then click here.) After being told for several years that this is really our best chance at recovery, it has been denied by the insurance company.
I knew that this was going to happen. The doctor even told us that it would get denied. But he said that there were steps to take to get it approved. “How long will it take?” He said that it could be quick and easy or it could take years.
Big sigh…
So the short version is that the order for IVIG was denied by insurance. Then the appeal was denied. Now I am trying to figure out the next steps.
Then long version? Well, the infusion company sent in the order for IVIG. It was denied on the basis of “not medically necessary.” Surprise, surprise.
Then I was told by the infusion company that the appeal was denied. Okay. I asked about the peer-to-peer. They said that my doctor didn’t want to do it. Ummm, no. We talked about it at the last appointment. The lady at the infusion company didn’t have any idea. I asked who said that he didn’t want to do it? She couldn’t tell me how she came to that conclusion. So it’s like we threw away one of our chances.
She said that our next step was for me and the doctor to do the external appeal. That they are done with their part. What about the second appeal? Don’t we get a second one? Nope. Per the letter, it was the final appeal.
I’m so confused. Where is the manual that says how to do all this!!!!
Okay, so I get the appeal denial letter in the mail. It cited two articles describing why IVIG is not an evidence-based treatment. Well, both are old articles. One is from 2016 and just mentions PANDAS as one of the 79 conditions listed in the article. There are over 600 citations for this article. The main citation for the one paragraph on PANDAS is from 1999!!! I think I can do better than that!
The other article is a very small study with only one outcome measure (measuring OCD, which is not something that my son has a significant issue with). It states that there needs to be more studies to conclude that there would be a benefit. Well, there are plenty of studies!!!
So here I am now.
I have a couple of options at this point.
One. Talk to the insurance company. I made an appointment with an insurance case manager. I just requested one and said that we have a couple of doctors treating different parts of the same problem and I want to coordinate care. We are waiting for that appointment to happen soon.
Two. I can present our case to the human resources department of my employer. I work for a very large healthcare company and our medical insurance policy is self-funded. I didn’t even know what that meant. So I had to ask around. Turns out that the insurance company is the administrator only. They process claims and provide the network. But my employer pays the bills directly. I always wondered why I got a check from my employer when I was reimbursed for medical that I prepaid. Now I know! They could potentially override what the insurance company decides. Hmmm…
Three. Do the external appeal. Federal law states that you have four months from the date of the appeal denial to request an external review with a private company that is contracted to provide another look. The deal is that their decision is final and all parties comply with that decision. We are now three weeks in.
So, that’s where we stand now. I have questions. I am confused by this process.
But first… Where’s the coffee? LOL!!!
