Share Facebook


 
12-12-2014, 04:40 PM   #1
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Time for a Lawyer?

Third denial of Remicade for every four weeks.
The GI nurse called and said the Rheumatologist is going to make a few more calls but I was advised to...............
1 File a grievance with the insurance company
2 Get a Lawyer


Needles to say I'm absolutely dumbfounded by the shear stupidity of our insurance company.
My child has to suffer because of this.

Has any one else been down this road?
__________________
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
12-12-2014, 06:44 PM   #2
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
Also go to the state board of insurance. Call the Remicade people and see if they can help as well. It is a ridiculously long process though and when time matters frustrating. Is this your private insurance? Didn't she also have some sort of state insurance? Or are both denying? Does she have a case manager at the insurance company? With the denial they should have given you a list of your rights and what the next steps would be.
__________________
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
12-12-2014, 06:58 PM   #3
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Also go to the state board of insurance. Call the Remicade people and see if they can help as well. It is a ridiculously long process though and when time matters frustrating. Is this your private insurance? Didn't she also have some sort of state insurance? Or are both denying? Does she have a case manager at the insurance company? With the denial they should have given you a list of your rights and what the next steps would be.
1 Yes she has private.
2 Yes she has state insurance for "special children".
3 Yes, both are denying it. If the private wont cover, neither will the state.
4 No case manager but did have a nurse from the insurance call a long time ago.

Does it ever get to the point of Lawyers for most?
What would I be suing for? The right to get the treatment or money?
12-12-2014, 07:36 PM   #4
xmdmom
Senior Member
 
Join Date: Jun 2012
Location: New York

My Support Groups:
Sorry - no answers, just more questions!

How often is your daughter currently getting remicade infusions? What is the reason your daughter's doctor wants to change to every 4 weeks? Have your doctors used this frequency in the past and found it to be reimbursable?

I tried to search to see if there was evidence that increasing the frequency to 4 weeks was effective. In the prescribing information I only saw the 4 week frequency mentioned in relation to RA,
For patients who have an incomplete response, consideration may be given to adjusting the dose up to 10 mg/kg or treating as often as every 4 weeks bearing in mind that risk of serious infections is increased at higher doses
12-12-2014, 07:46 PM   #5
Clash
Forum Monitor
 
Clash's Avatar
I do know of a parent that has a son with remicade and JSpA that the GI/rheumatologist wanted to moved to every four weeks. They had to jump a bunch of hoops before ins would okay it. It seems they had to up the dose got to five weeks and I think add mtx. There was no response so then they were allowed to go to four weeks. Crazy think is they hadn't done humira or Cimzia yet but the insurance was willing to approve stelara. I'm not sure if they had to hire a lawyer but the Mom did say she was greatful for the ins case manager because she helped push everything along and give them the best way to move forward each step.
__________________
Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
12-12-2014, 08:03 PM   #6
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Sorry - no answers, just more questions!

How often is your daughter currently getting remicade infusions? What is the reason your daughter's doctor wants to change to every 4 weeks? Have your doctors used this frequency in the past and found it to be reimbursable?

I tried to search to see if there was evidence that increasing the frequency to 4 weeks was effective. In the prescribing information I only saw the 4 week frequency mentioned in relation to RA,
1 Every eight weeks
2 Increasing because her JIA is considered moderate to severe and her IBD is flaring again.
3 The nurse said they are getting more and more flak from insurance for upping Remicade.

Grace has done awesome on Remicade but it's not lasting longer than 2-3 weeks. Just to get her through the last 5 weeks, the docs added sulfasalazine and a 17 day pred burst.
12-12-2014, 08:08 PM   #7
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
I do know of a parent that has a son with remicade and JSpA that the GI/rheumatologist wanted to moved to every four weeks. They had to jump a bunch of hoops before ins would okay it. It seems they had to up the dose got to five weeks and I think add mtx. There was no response so then they were allowed to go to four weeks. Crazy think is they hadn't done humira or Cimzia yet but the insurance was willing to approve stelara. I'm not sure if they had to hire a lawyer but the Mom did say she was greatful for the ins case manager because she helped push everything along and give them the best way to move forward each step.
I'll call on Monday to ask about a case manager.
Plus I'll file a grievance.
12-12-2014, 08:32 PM   #8
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Could they try 6 weeks at least until you get further with insurance since that tends to be easier to approve vs going from 8 weeks .
Since it will take time that she doesn't have to fight it .
__________________
DS - -Crohn's -Stelara -mtx-IVIG
12-12-2014, 08:54 PM   #9
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
Admittedly it has been a long while since I have helped manage insurance grievances AND none of them involved Remicade but I will say that you will all get a lot further, faster if you make an intermediate move to 6 weeks or increased dosage and prove that also doesn't work. I would also think the insurance company would want to see how the added med does in addition to the Remicade before approving the decrease to 4 weeks.

A case manager is really instrumental in helping guide you with what the insurance company might be looking for etc.

As far as a lawyer goes, no one I worked with ever really needed a lawyer. At a consult the lawyers should give you a good idea of what it is they can do for you and what you would be fighting for. If it were me, I would just want to fight for the approval to get my kid the treatment they need.
12-12-2014, 09:38 PM   #10
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
One other thought.. I asked in your other thread about a levels test. Tightening up the schedule only works if the patient is burning through the Remicade too fast. If she has sufficient levels of Remicade in her system at infusion time then the issue becomes more of a lack of response than a dosage issue and tightening won't help. I forget...what did the doc say about a levels test? I would want to get a levels test to make sure I was addressing the right problem. Might help with the insurance company as well...fair warning though...the insurance company will probably deny the levels test...although our doc said the state insurance covers it where as private denies so maybe.....
12-12-2014, 09:54 PM   #11
Maya142
Forum Monitor
 
Maya142's Avatar
Insurance approved infusions every 4 weeks for M without any problem - we also applied for JIA (technically juvenile AS now) and IBD. M is on high dose Remicade and insurance denied that at first but then paid after our rheumatologist appealed.
Sorry to hear you're having so much trouble FW.

I know Remicade is given every 8 weeks for IBD but for AS it is actually approved for every 6 weeks. I don't know if you can use that to somehow make a case? M never got to 8 weeks, we went straight to 6 weeks after the loading doses because we knew she had JSpA which was most likely going to become AS very soon.

Good luck!
__________________
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
12-12-2014, 10:06 PM   #12
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
Yeah, I think in O's three years of getting Remicade I have met maybe 2 patients who make it to 8 weeks. There are a bunch of 5 weekers and a lot of 6 weekers. The 8 week schedule was based on adult studies which don't always translate to the kiddies.

Interesting Maya....why for JIA do they go automatically to 6 weeks? Does it have to do with the kids metabolising the drug quickly and maybe they just have more experience on the rheumy side with this? Or do the rheumy kids need to be maintained at a higher Remi level?

Either way though I would think a levels test would be needed to assess whether it is a levels issue or a lack of response.
12-12-2014, 11:42 PM   #13
Maya142
Forum Monitor
 
Maya142's Avatar
I'm not sure. I don't know if they always go to every 6 weeks with JIA immediately but since my husband had AS, my older daughter's diagnosis had just been changed to AS, when M was put on Remicade, her rheumatologist decided to follow the schedule used for AS (which is every 6 weeks).

Her rheumatologist (and almost every rheumatologist we have ever seen - and we've seen MANY) has said that she doesn't use Remicade levels for whatever reason. I have absolutely no idea why GI's use them so much and rheumatologists not at all.

I believe Remicade is actually not approved for JIA so I wonder if rheumatologists just sort of wing it and decide the schedule based on how each kid is doing?!
12-13-2014, 07:54 AM   #14
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Sorry to hear that. No experience with insurance, but can't believe they would refuse. Do they really think anyone would choose to give their kids Remicade every 4 weeks unless it was medically necessary? Unbelievable. Hope it gets sorted
12-13-2014, 01:39 PM   #15
Brian'sMom
Senior Member
 
Brian'sMom's Avatar
 
Join Date: Dec 2010
Location: Kansas

My Support Groups:
Sorry if I missed it in this thread, but, what were their reasons for denial? If the doctor thinks she medically needs It and can prove it...It should be over. Are you positive that the person working on it at your doctor's office is doing a good job at it?
__________________
Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
12-13-2014, 11:35 PM   #16
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Definitely get a case manager. Ours makes a huge difference for us. Her primary care doctor needs to put in the request to the insurance company to have a case manager assigned. Usually they want a letter explaining that she has a chronic illness and that they are requesting a case manager for her.
__________________

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.
12-14-2014, 10:59 AM   #17
araceli
Forum Monitor
 
Join Date: Nov 2012
Location: El paso, Texas

My Support Groups:
Sorry you are going thru this. I know how it feels. Ask for an independent external review by an Independent Review Organization. In here is done by the State. Give them a call and they will tell you what to do. When you request that to your Ins. co. they have one business day to send the documentation from what the base their denial. IRO will contact your Doctor and ask for medical records and will contact you and let you know they will be conducting the review in case you will want to send documents or else to them. Goggle NAIRO (national independent review Organization) and Gib Smith Consulting Services. I am not recommending or endorsing this company, is just for you to get an Idea who does what. Good luck.
__________________
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
12-18-2014, 07:37 PM   #18
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
Been in talks with the Rheumatologist and the doc wants EVERY 4 WEEKS!!
I guess he feels the Ins is ignoring his calls. He feels once he can explain the situation that they'll approve it.
I brought up trying to get it approved for every 6 weeks at first but the nurse said the doc doesn't want her to suffer more than she has already or get worse.
12-19-2014, 03:24 AM   #19
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
I have no advice Fw. But wanted to send you mega loads of luck and well wishes and keeping everything crossed that the insurance company listens!

Dusty. xxx
__________________
Mum of 2 kids with Crohn's.
12-20-2014, 03:27 AM   #20
Sascot
Forum Monitor
 
Sascot's Avatar
 
Join Date: Aug 2011
Location: Falkirk, United Kingdom

My Support Groups:
Really hope the insurance gets sorted soon.
12-20-2014, 03:10 PM   #21
Mehita
Forum Monitor
 
Mehita's Avatar
 
Join Date: Nov 2011
Location: Minnesota

My Support Groups:
We've never had issues with insurance (thank goodness!), but it makes me SOOO angry that insurance companies even get a say in how a person, particularly a child, gets treated. If a doctor says a child needs x treatment, they need x treatment!

Do they think we enjoy putting all these meds into our kids? What happens if a child worsens or even dies due to insurance denying meds? Are they held responsible? Ugh, so frustrating.

Hang in there, Farmwife!
__________________
Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
12-20-2014, 03:30 PM   #22
Maya142
Forum Monitor
 
Maya142's Avatar
Hope it gets resolved soon Farmwife. Insurance companies are SO frustrating. It really sounds like you have a great rheumatologist though!
12-23-2014, 08:08 PM   #23
Farmwife
Forum Monitor
 
Farmwife's Avatar
 
Join Date: Apr 2012
Location: Michigan

My Support Groups:
The rheumatologist nurse called and said it's denied for the final time.
The doc tried all he could and now I have to start the process of filling the grievance
and ask for a review.

The GI said we can scope and see if that will help,
if we can say that damage is still being done.
I don't think insurance company will care.
Grace is still having GI issues, so a scope might be in her future anyway,

The good news is Grace is having no joint pains since remicade .
So at least her Christmas, Lord willing, will be less painful. :-)

Also my hubby made my Christmas and got me my first ever smart phone.
This thing is so cool. I feel like I could launch a space ship with this phone.

Grace and I want to wish you all a merry Christmas and a happy New year.
12-23-2014, 09:11 PM   #24
Maya142
Forum Monitor
 
Maya142's Avatar
I hope the grievance/review process works. I can't believe insurance is being so difficult. Both my girls have had infusions at 4 weeks (usually between 4 and 6 weeks NEVER 8 weeks) and my younger one is currently on high dose Remicade every 4 weeks.

Glad Grace's joints are feeling good. I hope you have more luck in the new year !!
12-24-2014, 08:51 AM   #25
Brian'sMom
Senior Member
 
Brian'sMom's Avatar
 
Join Date: Dec 2010
Location: Kansas

My Support Groups:
How is their place to decide over her doctors opinions when she needs it?! We have BCBS and they just approved a couple 4 weeks intervals of the new Vedo. What if your GI sent an appeal instead of rheumatologist? Maybe a Crohn's (possible damage) approach would work. I send Prayers your way and want to wish your family a Merry Christmas too!
12-24-2014, 09:17 AM   #26
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
Just catching up on this, sorry you're having such a tough time. Agree with all above that it's horrible that insurance companies can dictate treatment!

I have no knowledge with insurance company issues but do hope the appeal can go through quickly and successfully!
__________________
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
12-24-2014, 11:25 AM   #27
CrohnsKidMom
Senior Member
 
CrohnsKidMom's Avatar
 
Join Date: Mar 2013
Location: (Canada), Nova Scotia

My Support Groups:
This must be so frustrating! i have a family member who works in health benefits, so I asked him about this. One question-do you know if the FDA has approved in children the dosage, and frequency of dosage, that the Dr is proposing? If not, the ins. co. is likely looking at this as overdosing of the med, and that may be the basis of their denial. Having said that, it's hard to understand why the ins. co. would be so hard-nosed about this, if the medical evidence shows these changes in med or frequency are necessary. If you've completed the appeal process then there should be an ombudsman where you can have your case handled. If you hire a lawyer, then Ihe/she will be handling the case on your behalf, so I believe that means the ins. co. wouldn't be able to talk to you if you called them, etc. IMO, I would hold off on the lawyer until you've done all you can through the ombudsman-but that's just my opinion. Good luck!
__________________
Son diagnosed with Crohn's March 2013, at age 8
12-24-2014, 12:35 PM   #28
DanceMom
Senior Member
We've appealed with the insurance company 3 times regarding coverage of the Prometheus labs. We lost each time. It seems that once they've made up their minds it is nearly impossible to change. That being said, maybe this is happening for a reason (I like to think that way anyway). Maybe this gives you extra time to explore other options and/or get additional opinions. Whatever you decide, I pray that it is Grace's miracle!
__________________
A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
12-24-2014, 01:12 PM   #29
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
We appealed the Prometheus test denial also and won on second appeal. Sometimes it just takes figuring out what it is they need to hear and providing the data.

While we are all well aware of the proof of treatments and such, the insurance company is likely looking at this as a vey aggressive change. They are not denying treatment...just denying the change. Jumping from 8 to 4 weeks is a huge change and I am guessing there are not a lot of other cases that have done so. O ended up at a 4 week schedule for a short period but we worked our way down. having worked sorta in the industry I can understand the insurance company's point of view a bit.

FW: have they said they would cover a 7,6 or even 5 week interval? Has anyone asked?

Also, what ever happened with a levels test? Was one done? I would just hate to see everyone tie up so much time on shortening a schedule and have that not even be the issue.
12-24-2014, 01:19 PM   #30
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Does she have a crohns dx ?
Mri or X-rays or blood work showing damage ???
I know she has issues but is there objective evidence for the JIA increase side ?
Bloodwork numbers etc.,..
I know it's very common for remicade every 4 weeks for JIA
Has the Rheumo had a peer to peer review ..?
Good luck
Reply

Thread Tools


All times are GMT -5. The time now is 03:02 PM.
Copyright 2006-2017 Crohnsforum.com