Crohn's Disease Forum » Parents of Kids with IBD » Insurance company makes me SOOOO angry!

08-23-2016, 12:05 PM   #1
Join Date: May 2016
Insurance company makes me SOOOO angry!

So sorry to vent here ... but I knew you would all understand!!

I would say, during this whole horrible experience of my daughter being diagnosed with Crohn's Disease, that I have tried very hard to maintain my optimism and positive outlook. I have tried to see the positive side of the cards we have been dealt.
And then you have to deal with the insurance company and it pulls you into a negative, angry, downward spiral!!!!!!!!

We got a letter yesterday from our insurance co. saying that they have denied the doctor's request to cover Remicade services (500 mg every 4 weeks for 1 year) because the dosage amount and frequency of infusions is not "medically necessary in her case." I MEAN WHAT!!!!??? You are trying to tell me, you insurance person that has NO CLUE about what we have gone through, that the protocol that her pediatric GI doctor at STL Children's, that specializes in inflammatory bowel disease, and that has treated hundreds of kids like my daughter, doesn't know what is "medically necessary" for her???

I sure wish you, Mr. Insurance Man, could have been in our house from January through May and watched my daughter crying, doubled over on the couch in pain, unable to sleep, unable to eat, unable to make it to school, vomiting, and losing 30 pounds. And then, I wish you could see her now ... back to her normal weight, happy, eating, playing soccer, going to school, going to sleepovers with friends. And then you STILL TELL me that what her doctor had to recommend in order to get her to this point was not "medically necessary"!!!!! My daughter was/is fighting for her life! Her doctor worked tirelessly with us, tweaking the meds, to find the right dosage and schedule she needed to give her her body back, her health back, her life back!!!!!!! Do you know what the other option is ... hospitalizations and surgeries that I GUARANTEE would cost way more than her monthly medicine infusions!!!!

I talked to her doctor's office this morning and they are working on the appeal and it will probably have to go to a peer-to-peer review where her doctor talks to a doctor representing the insurance company to give them her records and explain why we had to make the infusion schedule as it is for the time being. And it will probably/hopefully be fine (doctor's office deals with this stuff all the time). But it is VERY frustrating in the meantime. And a little worrisome honestly that she may not be able to get the treatment she needs on time next Monday. And now, instead of her doctor spending her time seeing and helping other children, she will have to spend her time on the phone explaining herself to the insurance gods.

Grrrrr!!!! Makes me crazy to no end!!!!!!!
08-23-2016, 12:37 PM   #2
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CrohnsKidMom's Avatar
Join Date: Mar 2013
Location: (Canada), Nova Scotia

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Ugh. So sorry to hear you are going through this! I assume you are in the US, and the insurance laws there are much different than here in Canada, but I am guessing their denial is based on what is outlined as being standard in their guidelines, ie dosage, frequency, and not your specific case. So, anything greater than what their guidelines state, would be denied. Having said that, I would hope that additional medical documentation (phone calls generally don't work) from your doctor as evidence, would get you approved pretty quick. In the meantime, is there some type of compassionate care from the pharmaceutical co. available to cover the next infusion or until insurance approval?
Son diagnosed with Crohn's March 2013, at age 8
08-23-2016, 01:09 PM   #3
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Maya142's Avatar
That's AWFUL!l!! We are also dealing with insurance denying a dose increase for a different biologic. We have also had to appeal. It's totally RIDICULOUS.

Really, really hope the doctor is able to get the insurance company to agree quickly !!
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-23-2016, 01:30 PM   #4
Join Date: May 2016
Yes, I do believe the denial is because of the high dosage (500mg) and the shorter frequency (4 wks) vs the normal lower dose at 6-8 weeks. The only reason we are at this protocol is because she was retaining NO levels of Remicade between infusions. And that was even still going every 4! So her doc upped the mg and kept her at 4 weeks AND we added weekly MTX injections. That was mid May and it totally did the trick!!! Her last Remi levels 4 weeks ago were very good (high even). So they want to keep her at one more 4 week interval (that would be next Monday) and do another draw. If the levels are still maintaining then she said we would talk about spreading out the infusions. Which I assume means we would try every 6 weeks and see how it goes.
Hopefully with some documentation and the peer-to-peer review we will get this handled. And she is doing so well, even if she can't get the infusion next Monday, she would hopefully (fingers crossed!!!) do ok. It would just mean we were starting to spread out the time between treatment a little sooner than her doc really wanted.
The jumping through hoops and proving yourself is so frustrating. It's like they think we enjoy dragging our kids to infusion centers more than "medically necessary" and that we enjoy pumping them full of higher levels of these horrible drugs. Yes, of course. That's it. It's so much fun and we just are loving screwing the insurance company at the sake of our daughter!!
08-23-2016, 11:10 PM   #5
Senior Member
Join Date: Dec 2014
Location: Portland, Oregon

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Really hope you can get the approval soon, and I'm so glad to hear how well your daughter is doing! That's such great news!
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (20 mg weekly)
vitamin D, folic acid, iron, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
08-25-2016, 04:39 PM   #6
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Farmwife's Avatar
Join Date: Apr 2012
Location: Michigan

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Welcome to our life!
It's our second time fighting the insurance in a year and a half.
If you look at my thread, Time for a Lawyer, you'll see everything we went thru and the process.
BTW, ours went beyond the peer to peer review.
It's gone all the way to the state Board meeting.😡
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,

Crohn's Disease Forum » Parents of Kids with IBD » Insurance company makes me SOOOO angry!
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