Crohn's Disease Forum » Parents of Kids with IBD » Lab/Insurance Issues

05-28-2014, 03:05 PM   #1
Senior Member
Lab/Insurance Issues

A needs to have some immunity labs done ASAP and I'm hoping someone can help me navigate this process. The specific labs she needs are: B Cell panels, FoxP3 & CD45RA/RO (to be sent to Cincinnati Children's Hospital) and Toll-Like Receptor Function Assay (to be sent to ARUP). These labs are very expensive and Quest and LabCorp will not draw them. The nurse sent in a pre-auth but the insurance company will not pre-auth labs. Our hospital does not do outpatient labs anymore. I just don't know where to go to get them drawn and I don't want to be stuck with a hefty bill. We've met our out-of-pocket max for this year so I don't want to pay anything for them!

Anyone been in this situation before? Help!
A is 13

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies, Intestinal Lymphangiectasia

Treatment: Hizentra, Advair, Zyrtec, Cellcept
05-28-2014, 03:14 PM   #2
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Farmwife's Avatar
Join Date: Apr 2012
Location: Michigan

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sending the signal out
crohnsinct and mlp.
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,
05-28-2014, 03:34 PM   #3
Tesscorm's Avatar
Join Date: Jun 2011
Location: Ontario

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Sorry no advice... just ugghh that you need to deal with this runaround!!
Tess, mom to S
Diagnosed May 2011

May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
05-28-2014, 04:35 PM   #4
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Maya142's Avatar
No advice unfortunately but sending hugs. Have you asked A's rheumatologist's office what is usually done in this situation?

Our rheumatologist's office was very helpful when we were trying to get an MRI pre-authroized (had already done 1 set of hip MRIs that year and insurance did not want to pay for a second set).
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
05-28-2014, 05:03 PM   #5
Senior Member
Per the Rheumo and his nurse - "Most patients are unsuccessful in getting these labs done due to the cost and insurance issues." They weren't able to point me in the right direction. I'm hoping to get them done within the next 2 weeks because I expect results to take awhile. Her rheumo follow-up is mid- July and I'd like to make a plan for treatment (hopefully!). That's assuming we're dealing with an immune issue of course......
05-28-2014, 05:30 PM   #6
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Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

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Have you tried ring Cincinnati Children's Hospital testing lab?
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
05-28-2014, 05:36 PM   #7
my little penguin
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Random thoughts --
Are there any other children's hospital's near you that are in your network that have outpatient labs ?
Have you called cchmc or arup to see where most of the patients get the blood test done/covered by your insurance?

Cchmc at least from our experience has a lot of out of area /insurance experience so maybe try calling their immunology or rheumology depts and see where it gets you .....

You still may have a payment issue if your insurance company is on record for denying the prior authorization . Period not sure how to get around that ...
Did they deny the test itself or only the blood draw for the test through lab corp/quest???
Did you talk to anyone on the phone at the insurance company or just the Rheumo nurse ?
Have you checked with the NIH ?
Sometimes they have rare disease grants programs etc... Special ways to get obscure tests approved .

Not sure on arup ???

I have never heard of a children's hospital without an outpatient lab..
DS - -Crohn's -Stelara -mtx
05-28-2014, 05:45 PM   #8
my little penguin
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I can say we had the promethius test drawn outside of the normal "covered " out patient hospital lab.
So the bill went to our insurance through the promethius lab not from the normal hospital.
Because I had called and asked if the test was covered but did not ask if it was covered in or out of network... We were stuck with the majority of the bill.
Our insurance covered the test which they told me on the phone .
But they did not tell me the promethius lab was out of network even though we had previous tests run there before that were covered 100%.
The previous tests were drawn at the kiddy hospital in network so the bill went the insurance from the kiddie hospital not promethius labs - key to getting it covered.
Promethius labs were covered at an extremely low rate since they were out of network .

Moral ask what the coverage will be at lab xyz -
If the test will be covered
If it will be covered in or out of network
Which places will be covered in network etc....
05-28-2014, 06:13 PM   #9
Senior Member
Agree with Catherine. I would call the lab at Cinncinati Children and see if they have ideas of how others do it. I saw the lab slip says " call with any questions regarding collection or billing" and "the institution sending the sample is responsible for payment in full.The Diagnostic Immunology Laboratory of CCHMC does not bill patients or their insurance."
05-28-2014, 06:38 PM   #10
Cupkatemom's Avatar
Join Date: Dec 2013
Location: Dallas, Texas

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We are having some similar issues with the insurance covering blood work. Our Dr. just sent letters to the insurance company (after the fact) that these were necessary and would need to happen x/times a year due to her illness. Still awaiting word, but moving forward with this week's blood work anyway. When I finally got to a speak to a manager with the Insurance company today, he kinda hinted that I should move forward with the blood work anyhow, knowing that this disease is nothing to mess around with. I think they know the costs would be far greater if these blood tests were not given.

I really hope you can get this is frustrating.
Daughter dx Crohn's Dec. 2013
Imuran 75mg
05-28-2014, 06:39 PM   #11
Senior Member
We ran into a similar problem with Prometheus as well. I got a verbal pre-auth over the phone (I was so new I thought that was enough), had it drawn at the hospital we were using (at a different one now) and insurance denied the entire claim and said it wasn't warranted. That's why I'm so hesitant to have expensive labs done without prior authorization.

I did call our insurance company when we got the orders. I was told they don't do prior authorization for labs and that they wouldn't deny the claim (haha!). I asked the rheumo nurse to submit one anyway, just to try. They claim they never received it so she re-submitted today. I asked the insurance company where I should have the labs done and they said Quest would do them. I called Quest (and Labcorp) and they said they wouldn't.

Our hospital used to do outpatient labs but they no longer do. Something about insurance issues I was told. That's when we started using a local Quest, which is fine since the hospital is over an hour away anyway. We do have several other children's hospitals in the area so I'll make some calls tomorrow. If that gets me nowhere I'll call CCHMC.

Thanks so much for your help! This stuff frustrates me!!
05-30-2014, 12:49 PM   #12
Senior Member
I called another local Children's hospital and they do have an outpatient lab. Even better, they have a clinic about 20 minutes across town! (The hospital is a little over an hour away). They said they will draw and send any and all labs ordered so it shouldn't be an issue. Going to call Monday to make an appointment. Hoping to get them done next week! WooHoo!!
05-30-2014, 07:13 PM   #13
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DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia

I must confess…all this health insurance talk on the forum confuses the heck out of me…BUT at least I can tell when there is fab outcome! (I think the woohoo’s help!)

Mum of 2 kids with Crohn's.
05-31-2014, 06:19 AM   #14
knnamy's Avatar
Join Date: Apr 2013
I don't post much because we don't have a confirmed IBD dx, but we do have a confirmed primary immune disorder dx if you have any questions. I see this one has been resolved and I am so glad, I hope you get answers soon!

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