Need Help

[wornoutmom]

Got our official rejection letter from the insurance company today re: IVIG. We are planning to appeal, but don't know really what the best way to go about this is. Do I just let the drs. office handle this? Get a lawyer/insurance advocate involved? Just do it myself? I spoke with the folks at Baxter who recommended my doc ask for a peer review upon appeal, but that's as far as I got. If anyone has been through this and has tips on what to do or not to do, I sure would appreciate it!

[forjpj]

Got our official rejection letter from the insurance company today re: IVIG. We are planning to appeal, but don't know really what the best way to go about this is. Do I just let the drs. office handle this? Get a lawyer/insurance advocate involved? Just do it myself? I spoke with the folks at Baxter who recommended my doc ask for a peer review upon appeal, but that's as far as I got. If anyone has been through this and has tips on what to do or not to do, I sure would appreciate it!

 

 

We got denied for pex after peer review. For the peer review, I wrote a letter detailing all my ds10's daily activities of living, and how they were affected. Basically, that he couldn't do anything. I think we got some old, totally uninformed doc who either ignored the letter (which was pretty detailed and sad), or just heartless. This was all going on during the 2 blizzards on the East Coast, so I had ample time to leave numerous messages on many answering machines for people who were snowed in. I googled the doc's name, in order to find some way to contact him, because of course the insurance companies don't make it easy to contact anyone, and they won't give out emails. I found his name on some network site, and I think I sent him an email that way. Basically, I stalked him!! I even had an email ready to send his insurance company's media relations. Of course, I was still hoping to get somewhere playing the "good cop." Like I said, all during 2 blizzards with a "9 yr old infant"...pretty crazed! One week after the peer review denial, I finally got a proper number to leave a voice mail for the old doc. I left a message where I basically used the word life-threatening in every sentence, and ended the message with something like "it is life-threatening, and as long as you are willing to accept responsibility for that." Now within the hour I get a call from the insurance co. saying the pex has been approved. However, an hour after that, I get a call from someone in the "old doc's" office saying the pex had been denied from the week before. So I have no idea exactly what happened, and what worked! It was even funnier because I left the message on a number with 202 area code, got the approval call from a 301 area code, then got the old denial notification from a 703 area code. What I think probably happened, as much as I would like to take some credit for my "life-threatening message", was the nurse that helped us before the peer review. I have a feeling she actually read my letter, and when it got denied sent it to another doc who was a pediatrician, or at least who had some knowledge of pandas. She seemed to know about it and mentioned they were getting more and more requests.

 

I do think the letter detailing the daily activities of living helped, or helped me to break the situation down so I could express it better. The doctor's office did recommend using the phrase life-threatening which was totally appropriate at the time. They also recommended getting a case manager from the insurance company. This person is supposed to act on your behalf. We are set up with one now, the pex approval came through before she could help, but we are set for the future. Well this probably doesn't actually help much, and I wish I had some sure-fire advice! Good luck! I'll be thinking about you guys!!

[MomWithOCDSon]

WornOutMom and Forjpj --

 

Who are your insurance companies? Can you "name names?"

[bubbasmom]

You could maybe go on other insurance company's web sites and copy where they not only acknowledge PANDAS but also acknowledge that IVIG is a treatment of choice. I KNOW United Health Care has it on their site.

[Buster]

Hi,

 

Some things regarding working with Insurance.

 

1) Ask your doctor first whether they need your help. Sometimes they can work through the insurance claim items without getting the parents involved.

 

2) If the doctor has exhausted all options, call your insurance and ask to have a customer advovate assigned to your case. Get out of the claims space quickly

 

3) The next is subtle but important. If you work for a big company find out if the insurance is just the administrator of benefits or the provider of benefits. This matters. Many large companies are self-insured and therefore exempt from the equal protection for mental disorder -- but interestingly you can then work through your work to have the claim paid.

 

4) Once you get a client advocate, ask them if they are experienced in handling auto-immune disorders in children. Highlight that this is a child and with a distinct medical condition diagnosed by several doctors. If the person is not experienced in auto-immune, ask if they can help you navigate the insurance claim forms -- strangely enough asking for help is an incredibly effective technique.

 

5) If your child has recently been hospitalized, its often very helpful to explain to the advocate that you are asking them to advocate for your child and that you'd like to avoid additional hospitalization. You might then ask what documentation they rely on for determining treatment.

 

6) If they don't tell you, you might ask if you could provide them with peer reviewed articles indicating efficacy of treatment or whether that is better coming from your doctor -- there's all sorts of reasons to do this. Finally, ask if they can help explain whether they are denying your claim based on current research and if so can they provide a copy of the current research as it does not seem in keeping with the 2009 research that you and your doctor have discussed.

 

7) It will be extremely painful, but document everything. Every conversation, every mailing. While you will want to pick up the phone and call someone, it is actually better to use letters. You want to document, document, document. You must be persistant and patient.

 

The easiest is to have your doctor help navigate on your behalf -- often a simple coding change can transition a denial to an approval. As painful as this sounds, remember to ask for help, as their advice on navigating the system, ask what they have seem where people have been successful. It is critical to recruit the advocate to your help.

 

Regards,

 

Buster

 

Got our official rejection letter from the insurance company today re: IVIG. We are planning to appeal, but don't know really what the best way to go about this is. Do I just let the drs. office handle this? Get a lawyer/insurance advocate involved? Just do it myself? I spoke with the folks at Baxter who recommended my doc ask for a peer review upon appeal, but that's as far as I got. If anyone has been through this and has tips on what to do or not to do, I sure would appreciate it!

[melanie]

Hi

 

I had a horrible time with the Insurance company.I contacted a senior pediatric insurance specialist (BCBSNJ) and she made it happen

 

Melanie

[wornoutmom]

Thanks for the tips (especially the list Buster! Always so nice to have another thing on a list to do next if not getting anywhere -keeps hope alive!) Our insurance is Aetna, and unfortunately they have a list of about 40 procedures they will cover IVIG for -period. Our doc coded it AutoImmune Encephalitis (and for some reason tic disorder was also thrown in there???) and apparently also went for a Gamunex injection (never heard of this) in case they might approve that, but no go. The only encephalitis they cover is Rasmussen's and ADEM. Ds does not qualify as immune deficient (6 of 7 serotypes passed, all igg/igm etc levels and subclasses ok) or post infectious (too "post" - the things he's tested positive for are all IgG's no IgMs). And, (though scared of jinxing this) the past 3 weeks he has made massive improvements on Biaxin, so I would now be lying if I said it was life threatening (though it most CERTAINLY was a few months ago - and very well could be again anytime). I am not looking forward to slogging through all this....

[forjpj]

We have BC/BS FEP (federal), but because of the service area of the doc/hospital BC/BS Maryland handled the claim.

[dcmom]

wornout-

 

I am so sorry you are going through this- but glad to hear you are seeing some improvement. We are just coming off of battling Aetna, and I don't know if I have a lot of advice, except to be extremely persistant. We were battling for pex, which they also do not cover for pandas. We did eventually get approval.

 

I basically called every single day. I would try to talk to a supervisor, and aim to not get off the phone until they would explain what and when the next step would take place. They have something like a three level appeal process. Our doctor also had several heated conversations with them, and put in writing that they were jeopardizing my daughter's health by delaying treatment. DH's company is self insured, so he also got his HR dept involved- ultimately it would have been the company's decision.

 

It took 3 weeks to get approval- which we did get after we paid for the procedure out of pocket. Don't give up- it is all BS.

 

It is extremely painful to have to spend time fighting with the insurance company, when you should be taking care of your sick child, the rest of your family, and yourself. I am typically not a person who gets angry- but I have a hard time revisiting the BS with the insurance company without feeling a lot of anger- which generally makes me uncomfortable. In the end- (luckily our hospital/docs were in network) Aetna only had to pay $5k on a $29k bill. This is the amt of money they were willing to delay treatment and jeopardize daughter's health for. Unbelievable.

[wornoutmom]

dcmom - did your drs office approach them with PANDAS or another diagnosis. Ours was coded Auto-immune Encephalitis?

[dcmom]

Hhmm- the code the Dr used was something like post infectious encephelitis- I am sorry to say I can't remember exactly. She told me that was the code for pandas. She made no secret of pandas, and the insurance company's initial denial specified pandas. In the end we were approved- for both girls.