Denied...AGAIN!

[tpotter]

Got a dx from Dr. B, and the insurance company is h***bent on destroying my kids' lives. My DS 14 was approved for PEX last March (at Gtown), and things fell through with no fault of ours or his a few days before he was scheduled to get the PEX. Then the nightmare started. We couldn't wait any longer, and decided to do IVIG through Dr. K. As you know, that was denied with 2 appeals. We then went to Dr. B at the beginning of August, and MycoP IgG came back high, + C3D came back 32 for DS 17 and 84 for DS14 (Dr. B. said that was about the highest he'd ever seen.) He ordered more tests after we left on vacation, and thanks to LLM, I was able to get a fax sent to her from Dr. B, and she was able to scan it, and email it to me, while I was on my cellphone for 2 hours of the drive from PA to NC trying to find a lab near my dad's house to get the blood work done before we left on a much needed cruise (I finally arranged to get it done at Duke University Hospital outpatient.)

 

While out of the country, we got a voicemail from Dr. B's office saying that insurance was approved, and we were scheduled (for next week.) We were in Key West that Wed, and I called in to his office, and was told that everything was fine. When we got back on Friday, I was in for the surprise of my life. There was a voice mail from Dr. B's office (they're not open on Fridays), and it said that insurance had called back, and said they made a mistake, and there actually was no approval (the original one was that we didn't need approval, because it was in an office setting.) I called first thing Monday morning, and Dr. B's nurse told me the same thing. Then I got hold of the insurance person, and she hadn't heard, but was very confused, but she had an approval number, and all.

 

Well, not only did we need approval, but because it was being done in the state of CT, our insurance was saying that we also needed an external review from someone in CT! Meantime, Dr. B's office needed to bump us from our spots, which would have been during scheduled vacations from school, so my boys wouldn't have to miss more than 1 day of school, which is really significant right now for my 12th grader. I've been on the phone for hours with insurance since Monday, trying to find out what is going on, getting it approved, etc.

 

They actually gave it to a PEDIATRICIAN for external review of an immunological dx (not a PANDAS dx) made by a board certified immunologist! As soon as I heard that, I questioned them immediately, and asked how that could be. I knew immediately what they were up to, but I was powerless at that point. They decided it was "NOT MEDICALLY NECESSARY!" (the denial through Dr. K was that it "was experimental.")

 

OMG. I was beyond angry. Started cursing on the phone with the insurance person (never done that before, but boy did it feel good. ) Told them it was complete bull..., and that I was "so going to report them to the state insurance commission."

 

I hung up and started balling, then called my husband, and said I'd sell my soul, but we're finding the money for 2 kid, because there's no way I'm waiting any longer. I called Dr. B's office, but they're really busy, and I guess I'll hear back in the morning (I'll call again.) I left a message saying I'm paying out of pocket while we fight this, and let's get it scheduled.

 

I so don't have any more fight in me. I'm so overwhelmed. We've had this stuff going on for so many years, and between the insurance company (we actually have the premium plan if you can believe that), and the school stuff that won't end with my DS14, I actually really felt myself losing it today. I just got back from a nice relaxing vacation, and now I'm going off the deep end. Even more, I have been completely unable to schedule my own work for next week or the week after, and my client's are suffering.

[tpotter]

Oops...I meant LSS (instead of LLM...sorry ladies, but in other words, thank goodness for the never ending help of people on this forum!)

[kimballot]

You have been through so much and I wish I could find words that would make this even a little bit better. It is amazing what we are able to endure for our children... but there has to be a limit... Do you have an attorney that can help you? That may be all you have left. I will be thinking of you ~~

[matis_mom]

Got a dx from Dr. B, and the insurance company is h***bent on destroying my kids' lives. My DS 14 was approved for PEX last March (at Gtown), and things fell through with no fault of ours or his a few days before he was scheduled to get the PEX. Then the nightmare started. We couldn't wait any longer, and decided to do IVIG through Dr. K. As you know, that was denied with 2 appeals. We then went to Dr. B at the beginning of August, and MycoP IgG came back high, + C3D came back 32 for DS 17 and 84 for DS14 (Dr. B. said that was about the highest he'd ever seen.) He ordered more tests after we left on vacation, and thanks to LLM, I was able to get a fax sent to her from Dr. B, and she was able to scan it, and email it to me, while I was on my cellphone for 2 hours of the drive from PA to NC trying to find a lab near my dad's house to get the blood work done before we left on a much needed cruise (I finally arranged to get it done at Duke University Hospital outpatient.)

 

While out of the country, we got a voicemail from Dr. B's office saying that insurance was approved, and we were scheduled (for next week.) We were in Key West that Wed, and I called in to his office, and was told that everything was fine. When we got back on Friday, I was in for the surprise of my life. There was a voice mail from Dr. B's office (they're not open on Fridays), and it said that insurance had called back, and said they made a mistake, and there actually was no approval (the original one was that we didn't need approval, because it was in an office setting.) I called first thing Monday morning, and Dr. B's nurse told me the same thing. Then I got hold of the insurance person, and she hadn't heard, but was very confused, but she had an approval number, and all.

 

Well, not only did we need approval, but because it was being done in the state of CT, our insurance was saying that we also needed an external review from someone in CT! Meantime, Dr. B's office needed to bump us from our spots, which would have been during scheduled vacations from school, so my boys wouldn't have to miss more than 1 day of school, which is really significant right now for my 12th grader. I've been on the phone for hours with insurance since Monday, trying to find out what is going on, getting it approved, etc.

 

They actually gave it to a PEDIATRICIAN for external review of an immunological dx (not a PANDAS dx) made by a board certified immunologist! As soon as I heard that, I questioned them immediately, and asked how that could be. I knew immediately what they were up to, but I was powerless at that point. They decided it was "NOT MEDICALLY NECESSARY!" (the denial through Dr. K was that it "was experimental.")

 

OMG. I was beyond angry. Started cursing on the phone with the insurance person (never done that before, but boy did it feel good. ) Told them it was complete bull..., and that I was "so going to report them to the state insurance commission."

 

I hung up and started balling, then called my husband, and said I'd sell my soul, but we're finding the money for 2 kid, because there's no way I'm waiting any longer. I called Dr. B's office, but they're really busy, and I guess I'll hear back in the morning (I'll call again.) I left a message saying I'm paying out of pocket while we fight this, and let's get it scheduled.

 

I so don't have any more fight in me. I'm so overwhelmed. We've had this stuff going on for so many years, and between the insurance company (we actually have the premium plan if you can believe that), and the school stuff that won't end with my DS14, I actually really felt myself losing it today. I just got back from a nice relaxing vacation, and now I'm going off the deep end. Even more, I have been completely unable to schedule my own work for next week or the week after, and my client's are suffering.

I am so sorry about all this! I understand your anger and your decision to just do it. I hope you do find the energy to complain and appeal and do whatever it takes to get this straightened up. If I understand correctly, these things are subject to "peer" review. I really don't get why a pediatrician is being asked to give an opinion. I'd be going off the deep end too!

I'm still waiting to hear from our insurance because they messed up the approval for PEX. I am not too upset because in the end it was good timing for us. But ds is younger and I understand your frustration, especially since you have a 12th grader!

Hope things work out.

[peglem]

Sure wish I could shoulder some of that stress and anger for you. I'm outraged that you and your family are being treated this way. Hope justice prevails and your son gets everything he needs to recover!

[tpotter]

Thanks everyone. Sitting here unable to sleep, and just numb. We already went the lawyer route with the school district, and although we settled after a very protracted and negative Due Process case (3 years, and my son is now scarred for life, and the district is starting it all over again), lawyers are insanely expensive, and frequently really aren't worth the money (it was marginal whether or not we really benefitted from going to Due Process, because in the end, we lost so much money from paying private school tuition + lawyer's fees, and only got a portion back.

 

Unfortunately, I have to try to get all this worked out today, between clients, while trying to focus on my work (I've already taken off extensive numbers of days), and Dr. B's office is not open tomorrow (Monday is a holiday on top of that, and we have a mediation meeting with the school district on Tuesday.) The boys were supposed to get IVIG on Wed/Thurs (school is closed on Thurs/Fri, so they would have missed minimal school, but as far as I know Tues/Wed were given to other kids who's insurance was already approved.

 

I'm fighting 2 major battles simultaneously, and have been for 3 years. Even when I take off of work (I had quite a few cancellations the past 3 days, so I had time to deal with this), I was powerless to make things change.

 

I've been horribly asthmatic, Dr. B. found that I had MycoP (high IgE), after multiple immunologists couldn't find anything wrong with me,) and I can't even take care of myself properly, because all I'm ever doing is fighting a system that I just can't seem to get past. It so doesn't make sense.

 

It took so long to get a dx for my kids, then almost as long to find doctors who could/would tx, and now...once again...can't get the tx without paying through the nose, because insurance is h...bent on screwing things up.

[Fixit]

I'M SORRY!!!

[T_Mom]

I am so sorry -- Hold steady TPotter--you are one amazing mother and I am glad to hear Dr B was able to find a help for you along the way-- Do be gentle with yourself, I am glad to hear you were on a vacation and hope there is a way these issues can work out--

[Kayanne]

(((HUGS)))...and prayers ! I'm so sorry you are going through this!

[saidie10]

this is so horrible I could just scream! i am so very sorry you are dealing with this when all you are is a wonderful mom who has fought for your children and now that all your hard work has paid off and you have the answers and possibly some solutions, this is thrown at you! report them and fight, fight, fight...you still have some left in you although you feel as though you are at then end of your rope. hugs and prayers to you and your family

[thereishope]

I'm sorry you're going through this. If there is an approval number in existence, I wonder if you can get it done asap you'd find a loop hole to get it paid for by the insurance. Did you get the approval number by any chance?

Edited September 2, 2010 by Vickie

[NancyD]

I am so so sorry to hear this! I, too, have been having problems getting IVIg approved by my insurance company after they covered it for two years and it has been highly successful for DD. They changed their policy in February and I appealed but was turned down. I am now considering filing an injunction to force them to pay for future infusions. It makes me so mad that insurance companies do this to parents!!

 

Nancy

Edited September 2, 2010 by NancyD

[wornoutmom]

Let me guess...You must have Aetna!!

[Jengels]

I am sending many hugs and prayers to you and your family. YOU ARE AN AMAZING MOTHER!!!!

[wornoutmom]

Lord have I been in your shoes! I just wanted to add this: find out how much Dr B would charge you to do it out of pocket. If it is more than $12,000, look into Coram infusion services. We were forced to pay out of pocket as well by Aetna (though I am still fighting like mad for reimbursement - I am no where NEAR done with them yet!!). The 2 hospital infusion centers wanted $29,800 for 1.5 gm dose (ds14 weighed 130 lbs). We found a Coram center in our home town who has a policy of pricing the drug at wholesale for those who pay out of pocket. When we actually did the infusion with them, they went further to help, and only charged us $90 a day for nursing services (which in the end came out to like $10 an hour). The bill came in at $11,500 about. That's over $18,000 dollars less!!!!!!!!! They let me put it on my credit card even. I can't tell you how great they were. They have 75 centers all over the country, so it might be possible there is one near you. I realize that's still a hefty price tag, but like you, once we got to the decision making point, I was just going to find a way to make it happen. Yes, we're in debt. But ds' renewed health has been worth it. PM me if you want more info. You are an amazing mom and do NOT deserve to come up against this BS to get your children well, but you might have more energy to fight it on the back end once they are doing better.