Denied...AGAIN!

[tpotter]

No Blue Cross Personal Choice, which is supposedly one of the "premium" policies!

[tpotter]

UPDATE...Dr. B. spoke with their "peer reviewer" (still the pediatrician), who told him it was still denied, because they have a co-dx of PANDAS. Dr. B. repeatedly told the guy that he's not treating the PANDAS, but the fact that their blood tests show that they can't find strep and other infections, and that this is an acceptable use of IVIG. A pediatrician actually reviewed for an immunologist! Can you believe it? Still denied.

 

I immediately called BCBS, and told them to file an expedited appeal (it's now too late to do it next week, when the boys would have been off of school, anyway, because schools are closed here for Rosh Hashana!) I also left a message stating that I was reporting them to the State Insurance Commission, and that it is apparent that they are trying to kill my children.

 

It's pretty apparent that no matter what they are diagnosed with (could be cancer), they would still be denied tx, because they have a co-dx of PANDAS!

 

I already filed the complaint with the State Insurance Commission, but I know they don't get on it that fast.

 

BTW, I did check with Dr. B's office, because I was going to pay out of pocket. My boys are over 6 feet tall, so you can just imagine their weight. Total cost was over $30K! There's no way I have that much money.

 

I'll keep the infusion center in mind, but I don't know who would prescribe it is the problem (I will not use Dr. T, and I understand he's typically the one to call.)

 

It looks like it will be at least next week before I have an answer. If they deny it, I really don't know what I'll do. This so doesn't make sense.

[EmersonAilidh]

I don't have any experience or advice to give you but I am so sorry!!!! Things will get better somehow, I promise. I've posted it before, but I feel the need to post it again.

"Be patient toward all that is unsolved in your heart and try to love the questions themselves, like locked rooms and like books that are now written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer."

 

You're fighting for your children, YOU'RE in the right here. What's meant to be will be. Until then, you are in my thoughts. <3

[tpotter]

Thanks everyone. You are all the greatest.

[Fixit]

UPDATE...Dr. B. spoke with their "peer reviewer" (still the pediatrician), who told him it was still denied, because they have a co-dx of PANDAS. Dr. B. repeatedly told the guy that he's not treating the PANDAS, but the fact that their blood tests show that they can't find strep and other infections, and that this is an acceptable use of IVIG. A pediatrician actually reviewed for an immunologist! Can you believe it? Still denied.

 

I immediately called BCBS, and told them to file an expedited appeal (it's now too late to do it next week, when the boys would have been off of school, anyway, because schools are closed here for Rosh Hashana!) I also left a message stating that I was reporting them to the State Insurance Commission, and that it is apparent that they are trying to kill my children.

 

It's pretty apparent that no matter what they are diagnosed with (could be cancer), they would still be denied tx, because they have a co-dx of PANDAS!

 

I already filed the complaint with the State Insurance Commission, but I know they don't get on it that fast.

 

BTW, I did check with Dr. B's office, because I was going to pay out of pocket. My boys are over 6 feet tall, so you can just imagine their weight. Total cost was over $30K! There's no way I have that much money.

 

I'll keep the infusion center in mind, but I don't know who would prescribe it is the problem (I will not use Dr. T, and I understand he's typically the one to call.)

 

It looks like it will be at least next week before I have an answer. If they deny it, I really don't know what I'll do. This so doesn't make sense.

 

just wondering...as this is scarey...do ins transfer all records to new ins co...as i am almost certian that when i went to get approval for ivig early summer that the dan office i used put in pandas dx...

i will have to call tomorrow to get a copy....their forthe rightness might be the undoing of this for me..

Edited September 3, 2010 by Fixit

[Fixit]

i don't know if the white paper and diagnostic code(we're getting one right?) coming soon would help..

then it would be real...and i know it seems forever.but it is september..so oct, nov..hopefully, idk..maybe someone heard something....and i know i mentioned the nimh statement..it does talk about ivig/pex for pandas...

not pushing it but can't hurt..

[matis_mom]

UPDATE...Dr. B. spoke with their "peer reviewer" (still the pediatrician), who told him it was still denied, because they have a co-dx of PANDAS. Dr. B. repeatedly told the guy that he's not treating the PANDAS, but the fact that their blood tests show that they can't find strep and other infections, and that this is an acceptable use of IVIG. A pediatrician actually reviewed for an immunologist! Can you believe it? Still denied.

 

I immediately called BCBS, and told them to file an expedited appeal (it's now too late to do it next week, when the boys would have been off of school, anyway, because schools are closed here for Rosh Hashana!) I also left a message stating that I was reporting them to the State Insurance Commission, and that it is apparent that they are trying to kill my children.

 

It's pretty apparent that no matter what they are diagnosed with (could be cancer), they would still be denied tx, because they have a co-dx of PANDAS!

 

I already filed the complaint with the State Insurance Commission, but I know they don't get on it that fast.

 

BTW, I did check with Dr. B's office, because I was going to pay out of pocket. My boys are over 6 feet tall, so you can just imagine their weight. Total cost was over $30K! There's no way I have that much money.

 

I'll keep the infusion center in mind, but I don't know who would prescribe it is the problem (I will not use Dr. T, and I understand he's typically the one to call.)

 

It looks like it will be at least next week before I have an answer. If they deny it, I really don't know what I'll do. This so doesn't make sense.

I know you must feel horribly upset and confused right now but, have you considered the possibility maybe IVIG is not the best thing for your boys right now? I was really surprised when our ins. co, which usually approves PEX without a problem, messed up and approved it as out patient. This was supposed to take place end of July, perfect timing we thought. My husband had time off, we had everything lined up. Well, we are still waiting on the appeal! But it turns out it would have been a really bad time for ds to have PEX since we have some unresolved strep issues in the family. Maybe instead of hitting your head against the wall with the insurance company, you could try other venues?

[Iowadawn]

UPDATE...Dr. B. spoke with their "peer reviewer" (still the pediatrician), who told him it was still denied, because they have a co-dx of PANDAS. Dr. B. repeatedly told the guy that he's not treating the PANDAS, but the fact that their blood tests show that they can't find strep and other infections, and that this is an acceptable use of IVIG. A pediatrician actually reviewed for an immunologist! Can you believe it? Still denied.

 

I immediately called BCBS, and told them to file an expedited appeal (it's now too late to do it next week, when the boys would have been off of school, anyway, because schools are closed here for Rosh Hashana!) I also left a message stating that I was reporting them to the State Insurance Commission, and that it is apparent that they are trying to kill my children.

 

It's pretty apparent that no matter what they are diagnosed with (could be cancer), they would still be denied tx, because they have a co-dx of PANDAS!

 

I already filed the complaint with the State Insurance Commission, but I know they don't get on it that fast.

 

BTW, I did check with Dr. B's office, because I was going to pay out of pocket. My boys are over 6 feet tall, so you can just imagine their weight. Total cost was over $30K! There's no way I have that much money.

 

I'll keep the infusion center in mind, but I don't know who would prescribe it is the problem (I will not use Dr. T, and I understand he's typically the one to call.)

 

It looks like it will be at least next week before I have an answer. If they deny it, I really don't know what I'll do. This so doesn't make sense.

 

We have always been successful when we have had denial issues (for about anything, or if BCBS of Iowa was giving us extra grief) to contact the benefits person at my husband's work, who would get the BCBS rep for his employer to rattle some cages. We armed them with info and we got results lickety-split. We crafted a letter that the rep used and highlighted the need for IVIG, how they didn't have any trouble covering drugs that were not FDA approved for 10 yo kids (One Ahlzeimer, one Parkinson's, one other not cleared for pediatric use) and how these haven't done much. And how one drug was making him ill and we had to remove him from it. They didn't have any problem paying for multiple times in the behavioral unit at nearly 15k a pop and that wasn't really helping long term. We had had one infusion and it did show positive results, and how he had returned to school at one point, until he was hit with strep in the family and spiraled. How he had missed over half the school year. That UHC was covering it and that Canada recognized it's use. And how the NIMH recognized the trx protocol the doc was using.

 

I don't know your employer situation. There should be a "cage rattler" (ins. rep) the benefit's person knows about that could go to bat for you. We were technically out of appeals & appeals of denials and we got results we never would have gotten had we fought on our own. Just some ideas.

 

Dawn

[kimballot]

UPDATE...Dr. B. spoke with their "peer reviewer" (still the pediatrician), who told him it was still denied, because they have a co-dx of PANDAS. Dr. B. repeatedly told the guy that he's not treating the PANDAS, but the fact that their blood tests show that they can't find strep and other infections, and that this is an acceptable use of IVIG. A pediatrician actually reviewed for an immunologist! Can you believe it? Still denied.

 

I immediately called BCBS, and told them to file an expedited appeal (it's now too late to do it next week, when the boys would have been off of school, anyway, because schools are closed here for Rosh Hashana!) I also left a message stating that I was reporting them to the State Insurance Commission, and that it is apparent that they are trying to kill my children.

 

It's pretty apparent that no matter what they are diagnosed with (could be cancer), they would still be denied tx, because they have a co-dx of PANDAS!

 

I already filed the complaint with the State Insurance Commission, but I know they don't get on it that fast.

 

BTW, I did check with Dr. B's office, because I was going to pay out of pocket. My boys are over 6 feet tall, so you can just imagine their weight. Total cost was over $30K! There's no way I have that much money.

 

I'll keep the infusion center in mind, but I don't know who would prescribe it is the problem (I will not use Dr. T, and I understand he's typically the one to call.)

 

It looks like it will be at least next week before I have an answer. If they deny it, I really don't know what I'll do. This so doesn't make sense.

 

 

OK... let me get this straight... I applied for out of area coverage for my Blue Cross HMO to cover Dr. B and they said no - because my son is immune deficient and there are local doctors who treat immune deficiency so there was no reason to go see Dr. B. The pediatrician could not mention that Dr. B knows lots about PANDAS because PANDAS is not a disease and there is no diagnostic code...

 

Now tpotter has BCBS and she is told that since they have PANDAS listed in the chart, they cannot cover it because it is a co-diagnosis. Wait... I thought it WASN'T A DIAGNOSIS!!

 

So- what is it, insurance folks - is it a diagnosis or not? Do I have to ask my doctors to NOT note the PANDAS - maybe just list all the symptoms??

[EmersonAilidh]

KimBallot - Diagnosis Shmiagnosis. We just wanna make sure your kids stay jacked up on all kinds of pharmaceuticals instead of actually feeling better.. God forbid a bright future goes on OUR tab.

 

IowaDawn - THANK YOU!!!! I just posted about this!!! If I'm denied antibiotics soon I plan on doing the exact same. I also dealt with the Alzheimer's, Parkinson's, & non-pediatric drugs. Funny how treatment is all too easy to come by as long as it's in that little orange bottle.

[Fixit]

UPDATE...Dr. B. spoke with their "peer reviewer" (still the pediatrician), who told him it was still denied, because they have a co-dx of PANDAS. Dr. B. repeatedly told the guy that he's not treating the PANDAS, but the fact that their blood tests show that they can't find strep and other infections, and that this is an acceptable use of IVIG. A pediatrician actually reviewed for an immunologist! Can you believe it? Still denied.

 

I immediately called BCBS, and told them to file an expedited appeal (it's now too late to do it next week, when the boys would have been off of school, anyway, because schools are closed here for Rosh Hashana!) I also left a message stating that I was reporting them to the State Insurance Commission, and that it is apparent that they are trying to kill my children.

 

It's pretty apparent that no matter what they are diagnosed with (could be cancer), they would still be denied tx, because they have a co-dx of PANDAS!

 

I already filed the complaint with the State Insurance Commission, but I know they don't get on it that fast.

 

BTW, I did check with Dr. B's office, because I was going to pay out of pocket. My boys are over 6 feet tall, so you can just imagine their weight. Total cost was over $30K! There's no way I have that much money.

 

I'll keep the infusion center in mind, but I don't know who would prescribe it is the problem (I will not use Dr. T, and I understand he's typically the one to call.)

 

It looks like it will be at least next week before I have an answer. If they deny it, I really don't know what I'll do. This so doesn't make sense.

 

 

OK... let me get this straight... I applied for out of area coverage for my Blue Cross HMO to cover Dr. B and they said no - because my son is immune deficient and there are local doctors who treat immune deficiency so there was no reason to go see Dr. B. The pediatrician could not mention that Dr. B knows lots about PANDAS because PANDAS is not a disease and there is no diagnostic code...

 

Now tpotter has BCBS and she is told that since they have PANDAS listed in the chart, they cannot cover it because it is a co-diagnosis. Wait... I thought it WASN'T A DIAGNOSIS!!

 

So- what is it, insurance folks - is it a diagnosis or not? Do I have to ask my doctors to NOT note the PANDAS - maybe just list all the symptoms??

 

yes..unfortunately, until further notice!!!

[wornoutmom]

UPDATE...Dr. B. spoke with their "peer reviewer" (still the pediatrician), who told him it was still denied, because they have a co-dx of PANDAS. Dr. B. repeatedly told the guy that he's not treating the PANDAS, but the fact that their blood tests show that they can't find strep and other infections, and that this is an acceptable use of IVIG. A pediatrician actually reviewed for an immunologist! Can you believe it? Still denied.

 

I immediately called BCBS, and told them to file an expedited appeal (it's now too late to do it next week, when the boys would have been off of school, anyway, because schools are closed here for Rosh Hashana!) I also left a message stating that I was reporting them to the State Insurance Commission, and that it is apparent that they are trying to kill my children.

 

It's pretty apparent that no matter what they are diagnosed with (could be cancer), they would still be denied tx, because they have a co-dx of PANDAS!

 

I already filed the complaint with the State Insurance Commission, but I know they don't get on it that fast.

 

BTW, I did check with Dr. B's office, because I was going to pay out of pocket. My boys are over 6 feet tall, so you can just imagine their weight. Total cost was over $30K! There's no way I have that much money.

 

I'll keep the infusion center in mind, but I don't know who would prescribe it is the problem (I will not use Dr. T, and I understand he's typically the one to call.)

 

It looks like it will be at least next week before I have an answer. If they deny it, I really don't know what I'll do. This so doesn't make sense.

 

 

 

Would Dr B be willing to write the script for the IVIG at a different infusion center? This is how we ended up. Our prescribing neuro, Dr C, wanted it done at his hospital infusion center. But due to the extreme difference in cost, was willing to write the script and fax it to Coram.

[tpotter]

Another Update...I spoke to the insurance company again this morning, and officially started the expedited appeal. I emphasized the fact that I thought it was completely inappropriate that they had used a pediatrician to review an immunological case. The woman asked if Dr. B. had asked to have the peer to peer review with an immunologist, and I told them he wasn't given the option. I also told them that I had filed the complaint with the State Insurance Commission.

 

A little after 4:30 this afternoon, I got a call from someone who had handled my appeal last time (when we were denied through Dr. K.) She was calling me after she was supposed to be gone (I wonder if the Insurance Commission had spoken with them, because they would NEVER do that.) Anyway, she told me she was going to push this through first thing Tuesday morning (faster than an otherwise expedited appeal, which is normally 3 business days), would gather what information she could, and then call me. I told her that I would be tied up in a mediation meeting with the school district, because my child was so sick, that he couldn't even attend public school (I thought that might help a little.) I gave her Dr. B's insurance person's name and phone number.

 

Keep us in your prayers...I guess we now have 2 biggies on Tuesday!

 

I'm spending the weekend writing up what I'm going to say at the mediation meeting, and organizing all our papers (mostly the 4 letters of support from doctors.) The school district is pulling out all the stops, and our pediatrician already told their doctor that if they keep pushing this, they're going to make it worse (our school district revels in not listening to anyone, including doctors.) So, we'll see.

 

Have a good and restful weekend everyone.

[Iowadawn]

Oh, I remember the other thing we mentioned in our "loaded for Bear" letter to BCBS. Fine, you don't like this trx or think it will work, please tell us what trx you would recommend that will b/c our doctor wants to know!! (He said to put that in!) D