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Crohn's Disease Forum » Parents of Kids with IBD » Time for a lawyer. Part 2


 
11-10-2016, 01:56 PM   #1
Farmwife
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Time for a lawyer. Part 2

Yes you read that right.

We got new health insurance about a two months ago.
It was supposed to be better Insurance than the Priority Health Plan that we had.
It was supposed to be easy for Grace to get her Remicade infusions.
Or so we thought.

I receive a call on Tuesday that Gracie's Remicade infusion was cancelled for Thursday because her new insurance will not cover it.
I called her rheumatologist office and talk the head nurse, she had just got the letter that day about the denial.
She asked if I got a denial letter in the mail and I said no.
. The letter of denial that she received doesn't even say why it was denied other than saying they do not cover Remicade at all.

I called Blue Cross Blue Shield of Michigan.
They would not put me through to a case manager
because they said they don't have any.
I ask to be put through to the grievance department but they said no.
They said that the doctor's office has to handle this.

I told the rheumatologist nurse what they had said and she had already called and all they did was faxed her appeal letter to send back. They will not do emergency cases. She explained that Gracie is a 7 year old child that needs her Remicade and has been on it for 1.5 years. They said fax it in and we have to wait. They will not move faster.
Unbelievable, it's just unbelievable what we're going through.
If Remicade wasn't worth it I would just give up.

Oh, the last Insurance delayed the Remicade infusion eight days.
She still hasn't gotten back into remission thanks to that delay.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
11-11-2016, 10:08 PM   #2
Pilgrim
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Oh, Farmwife, that is terrible. Praying.
11-11-2016, 10:22 PM   #3
Maya142
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Any news Farmwife? We've had a hard time getting a dose increase approved for my daughter's biologic. Been fighting with insurance for nearly 6 months now .
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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
11-12-2016, 08:57 AM   #4
Farmwife
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None other than its pending.
I guess I shouldn't of complained about the old insurance, at least they let me be apart of the appeal and grievance process.
She should have had her infusion 2 days ago but she's still holding steady but I see EN popping up on her legs.
My hubby is putting pressure on the union to see what can be done.
11-12-2016, 10:08 PM   #5
Tesscorm
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I'm so sorry to hear this! I think it's horrible that insurance can play such a large part in the treatment of a patient! At the very least, treatment should continue throughout the appeal process - the patient, least of all a child, shouldn't be the one 'losing' while the process drags on and on and on.

I do hope something 'clicks' and you get a quick answer!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
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
11-13-2016, 11:24 AM   #6
pdx
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That is just terrible. I really hope that the approval comes through fast.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, 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
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
11-13-2016, 09:38 PM   #7
CrohnsKidMom
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My heart goes out to you. Like Tess said, I can't believe they would not allow treatment to continue throughout the appeal process. Poor Grace. Keep us posted.
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11-13-2016, 10:19 PM   #8
my little penguin
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Hope things work out soon

If treatment continues then the hospital would have to bill the patient in the tens of thousands of dollars until the appeal was approved
I know we had to sign a form to accept billing for a procedure not covered by our insurance
But it was one of
Remistart won't cover anything if you don't have insurance

You could plead your case to Johnson and Johnson to help during the appeal (I think they own remicade )
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11-13-2016, 10:20 PM   #9
my little penguin
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http://www.jjpaf.org/eligibility/

Look into this
11-13-2016, 10:27 PM   #10
my little penguin
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http://www.crohnsforum.com/showthread.php?t=58089

Thread on bcbs not covering remicade
11-14-2016, 09:24 AM   #11
Lisa
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Thanks for the link....it refreshed my memory too - make sure they are looking under the MEDICAL portion of the plan, NOT prescriptions!!!!!
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on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
11-14-2016, 09:51 AM   #12
my little penguin
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We had that problem
They said it wasn't covered but they were looking under prescription coverage since it's a drug
Also make sure the doc paperwork is going to the right place

Check yo make sure having the infusion at the hospital isn't the issue
A lot of bcbs are switching over to home health infusions otherwise it isn't covered
11-14-2016, 12:03 PM   #13
Farmwife
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Interesting
I'll make a list of questions.
This is the third fight in 18 months the doctor has done on our behalf with the insurance company but each is so different.
11-17-2016, 10:23 PM   #14
CarolinAlaska
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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
11-19-2016, 03:48 PM   #15
Optimistic
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Did it work out?
11-20-2016, 01:31 PM   #16
Farmwife
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No it didn't. Still haven't heard how the appeal came out.
BCBS won't talk to us or her docs.
Her body is starting to show troubling signs. 10 days past due.
Monday will be important on what we do.
11-23-2016, 10:43 PM   #17
CarolinAlaska
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Carnegie, what's become of this and poor Grace stuck in the middle?
11-24-2016, 08:34 AM   #18
Farmwife
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Yes, unbelievable.

I found out last week that they didn't even enter the appeal until the 14th.
Even tho the rheumatologist nurse had a confirmation number that it was faxed a week earlier.
So we were told that it could tale up to 30 days from the 14th to hear their ruling.
They just won't speed it up for any reason. They don't care!

On Friday Grace starts a 10 day burst of prednisone.
11-24-2016, 01:10 PM   #19
kimmidwife
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That is beyond awful!!!! Maybe you need to contact a lawyer now?
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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.
11-24-2016, 04:00 PM   #20
Farmwife
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I asked the rheumatologist nurse about the lawyer but she said to hold of four a little bit.
11-24-2016, 04:38 PM   #21
kimmidwife
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I would give it a few more days at most and then contact one. It is not rightz,
11-24-2016, 05:10 PM   #22
polly13
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Thinking of you and grace beyond awful what they are doing to you
12-02-2016, 08:32 PM   #23
Farmwife
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Update
23 days late and still no word from the insurance company other than its in appeals.
I can't say much yet but we do have some help in the government higher ups in the state. But nothing moves easy in Michigan.

The Rheumatologist has put her on 30 ml of prednisone because her arthritis is so bad in her arms the teacher is doing mostly oral testing now.
Gi wise........
She's coming out of remission in front of my eyes. The ibd stuff is the only thing that mostly behaved.
At least I can say for sure is that Remicade does/did work for Grace.

Next week we discuss a different med if nothing changes with insurance.
12-02-2016, 09:24 PM   #24
pdx
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I am so so sorry, Farmwife.
12-03-2016, 12:17 AM   #25
Maya142
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That's awful - I'm so sorry to hear that. I hope you are able to figure it out and don't have to switch medications.
12-03-2016, 09:56 AM   #26
CarolinAlaska
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Have you tried to get her Medicaid for kids with chronic disabilities as a backup? In the past this was a lifesaver for us when the insurance denied things like EEN. It is a pain to fill out all the paperwork and takes a couple months, but well worth it for matters like these.
12-03-2016, 10:34 AM   #27
Farmwife
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We already have that insurance for Grace but there's a big snag in the plan.
It had also been a huge life saver for us as well......until now.
12-03-2016, 06:47 PM   #28
CarolinAlaska
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We already have that insurance for Grace but there's a big snag in the plan.
It had also been a huge life saver for us as well......until now.
. For us too. I have to start all over applying again.
12-11-2016, 02:08 PM   #29
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We have had many issues with Blue Cross over the years. What I came realize is the service you receive is quite dependent on your choice of medical group within the Blue Cross system. We had to change medical groups several times until we found one which was organized and put our needs, as customers and patients, first. I hope voicing our experience helps you.

Came to the point, we eventually moved to a different insurance provider all together.
12-12-2016, 08:14 PM   #30
kimmidwife
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FW,
I am so angry to hear this is going on. I think it really is time to hire a lawyer and not wait any longer. Maybe the threat of a lawyer will make them finally move on this. It is ridiculous.
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Crohn's Disease Forum » Parents of Kids with IBD » Time for a lawyer. Part 2
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