Crohn's Disease Forum » Parents of Kids with IBD » Being driven crazy by remicade authorization


12-19-2017, 02:28 PM   #1
xmdmom
Senior Member
Being driven crazy by remicade authorization

So my son (now an adult) moved from State A to State B. In State A, he had been on Remicade for >1 year. In State B, he had Remicade twice. My son decided he didn't want to live in State B, so moved back to State A precipitously 3 weeks ago.

As soon as he moved, I called his old GI doctor in State A and told the office that he would need Remicade the week of Xmas. I got records faxed to them from State B (labs, infusion notes). They made him get a new tb test even though he had one in Sept in the other state and they had the labs showing that.

27 calls (literally calling every day at least once!) and now 3 weeks since the first call and the insurance company still has not received a Remicade request from the GI in State A.


I am at wit's end. The insurance co (Aetna) says they can't begin the preauthorization process for Remicade until

1. they hear that he is no longer getting infusions in State B [We have asked State B doctor's office to call and say this but they haven't done it yet.] and

2. they get the request for infusion in State A [ I can't believe that the doctor's office hasn't requested it yet. The state A doctor's office says they can't request until the State B doctor cancels the order.]

Any ideas about how to expedite things?

My son will only be in the city of the old State A doctor for 2 days next week so if it doesn't happen then, it will be really really inconvenient.
12-19-2017, 02:50 PM   #2
crohnsinct
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Join Date: Mar 2012
Location: California

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Oh man! I just went through the same exact thing with my girls and went through it twice with O for college.

Yes that is the process. Old doc or center has to release their authorization and then new doc/center has to request theirs. We also have Aetna. Once the docs get their stuff in they are VERY fast with the approvals. We literally got ours in a couple of hours.

Looks like you have to go all mama bear on the centers and make them get their stuff in. Stress to them the time issues. We had a similar issue with O and her infusion down at college and having to make sure everybody did their thing because she was leaving school in two days to then be on the road for three weeks and still nothing was happening! But it stinks when the kids are technically adults and being your typical 19 year olds are very meh about the whole thing. Did your son sign the form saying you can have conversations with the centers on his behalf? I basically held O's college tuition hostage until she signed it

I hate having to be that person.
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
12-19-2017, 02:54 PM   #3
pdx
Senior Member
 
Join Date: Dec 2014
Location: Portland, Oregon

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How frustrating! It sounds like the hold up is the State B doctor. When you call them each day, are they telling you that they'll take care of it, but then ignoring you? Or are they saying that they'll leave messages, and then the message is getting shuffled around with no action? If that's the case, maybe you can push harder to get to actually talk to the person who could actually cancel the order?

It is so hard to deal with things like this in another state, since you can't just show up at the door and stay until you get action.
__________________
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
12-19-2017, 03:00 PM   #4
xmdmom
Senior Member
Yes my son signed so I can speak with the office.
The doctor's office is extremely slow --like calls you back in 5 days.

I want to cry because after this infusion, my son wants to get it in our town, so another doctor (who he saw a few times in the past before he started Remicade) and we'll have to repeat the whole process again.

I just spoke to a nurse who said she'd call right now but then found out the number I gave her, may not be the correct one... I'm hold with Aetna right now.
12-19-2017, 03:10 PM   #5
xmdmom
Senior Member
Got the old order canceled. Now need the new order. Just handed it off to my husband.

Why does it need to be so hard?

If my son needed to do this, he'd just go without medication... I wonder how many people have a delay in meds because of this rigamarole.
12-19-2017, 03:25 PM   #6
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
TONS! I subscribe to various twitter accounts and there are numerous reports of adults going weeks without their Remicade infusions due to insurance snafus and quite honestly not wanting to be bothered to follow up. Interestingly, these adults are reporting these things because they built antibodies as a result and want everyone to be warned!

Ahh to be 19 and invincible. My daughter's current dilemma is that she went shopping in the mall and found a pair of Vans that she needs in order to live. They were out of stock. She had the clerk call all the surrounding stores. Nothing. So she found another pair that apparently will keep her alive but she won't live the full life she might have with the others. Out of stock and not in stock in any nearby store. She then asks clerk to check California because I clearly have nothing better to do the week before Christmas then go fetch her shoes and bring them with me to the East coast. Nada. She went online to find them and out of stock. She has now written an email to Vans asking if they are ever going to release more inventory or make these shoes in other colors for the spring. But who cares if her home health nurse didn't show up for her infusion.
12-19-2017, 06:02 PM   #7
Maya142
Forum Monitor
 
Maya142's Avatar
Ahh to be 19 and invincible. My daughter's current dilemma is that she went shopping in the mall and found a pair of Vans that she needs in order to live. They were out of stock. She had the clerk call all the surrounding stores. Nothing. So she found another pair that apparently will keep her alive but she won't live the full life she might have with the others. Out of stock and not in stock in any nearby store. She then asks clerk to check California because I clearly have nothing better to do the week before Christmas then go fetch her shoes and bring them with me to the East coast. Nada. She went online to find them and out of stock. She has now written an email to Vans asking if they are ever going to release more inventory or make these shoes in other colors for the spring.
That is truly hilarious crohnsinct!! It looks like she would be capable of handling her infusions...if only they were as important as Vans .

My younger daughter was recently put on a biologic that was not yet approved for AS. We have spent 6 months fighting insurance to get it approved. My husband and I were honestly on the phone daily going back and forth between insurance and the doctor's office. Nothing would have gotten done if we hadn't stayed on top of it.

My daughter is 20 but was flaring and so sick that there is no way she would have been able to handle this. It was seriously the most frustrating process for even me and my husband and her poor rheumatologist who probably filled out a hundred forms.

Once we finally got it approved, insurance said we'd have to file an exception form because they were dropping it from their formulary in 2018.

The whole thing was the most aggravating, frustrating process and I am SURE there are many adults who would have just given up.

My husband has AS and if it had been for him, he would have given up on it long ago and decided to just suffer instead.

I am really hating insurance this year. We have had to fight them for so many things.

Anyway, just wanted to say good luck xmdmom. I feel your pain!!
__________________
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
12-19-2017, 09:19 PM   #8
kimmidwife
Forum Monitor
 
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That is just crazy! I hope you finally get it worked out the hoops these insurance companies put people through is just nuts!!!
__________________

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
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