# Time for a Lawyer?



## Farmwife (Dec 12, 2014)

:frown: 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?


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## crohnsinct (Dec 12, 2014)

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.


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## Farmwife (Dec 12, 2014)

crohnsinct said:


> 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?


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## xmdmom (Dec 12, 2014)

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


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## Clash (Dec 12, 2014)

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.


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## Farmwife (Dec 12, 2014)

xmdmom said:


> 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.:frown: Just to get her through the last 5 weeks, the docs added sulfasalazine and a 17 day pred burst.


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## Farmwife (Dec 12, 2014)

Clash said:


> 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.:thumright:
Plus I'll file a grievance.


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## my little penguin (Dec 12, 2014)

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 .


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## crohnsinct (Dec 12, 2014)

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.


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## crohnsinct (Dec 12, 2014)

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.....


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## Maya142 (Dec 12, 2014)

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!


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## crohnsinct (Dec 12, 2014)

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.


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## Maya142 (Dec 12, 2014)

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?!


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## Sascot (Dec 13, 2014)

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


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## Brian'sMom (Dec 13, 2014)

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?


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## kimmidwife (Dec 13, 2014)

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.


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## araceli (Dec 14, 2014)

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.


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## Farmwife (Dec 18, 2014)

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.


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## DustyKat (Dec 19, 2014)

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! :heart: 

Dusty. xxx


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## Sascot (Dec 20, 2014)

Really hope the insurance gets sorted soon.


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## Mehita (Dec 20, 2014)

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!


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## Maya142 (Dec 20, 2014)

Hope it gets resolved soon Farmwife. Insurance companies are SO frustrating. It really sounds like you have a great rheumatologist though!


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## Farmwife (Dec 23, 2014)

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.:yfaint:

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.:thumleft: I feel like I could launch a space ship with this phone. :thumleft:

*Grace and I want to wish you all a merry Christmas and a happy New year.
*


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## Maya142 (Dec 23, 2014)

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 :hug:!!


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## Brian'sMom (Dec 24, 2014)

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!


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## Tesscorm (Dec 24, 2014)

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! :ghug:


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## CrohnsKidMom (Dec 24, 2014)

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!


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## DanceMom (Dec 24, 2014)

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!


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## crohnsinct (Dec 24, 2014)

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.


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## my little penguin (Dec 24, 2014)

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


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## Farmwife (Dec 24, 2014)

I'll have to call to get all my facts straight but here's what I know so far.
Yes, the doc had a peer to peer review.
The insurance is saying that her treatment goes beyond what's needed for JIA in a 5 yr old. The paper of the denials state some national standard.
No, they don't want to cover anything but every 8 weeks (see above statement).

Her GI has dx Microscopic Colitis in the IBD family but not Crohn's or UC yet.
The insurance code/number is still EGID's. We kept it this way so it wouldn't mess up her insurance. I wasn't in a hurry to get her scoped again and the GI, at the time at least.
The GI brought up trying to pinpoint which it is to help out with insurance.
She feels its Crohn's because of the TI involvement. 

You know what Dancemom I have been researching other ways to help Grace but in the back of my mind is fear because we did this before and nothing helped.


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## DanceMom (Dec 24, 2014)

When a child doesn't fit nicely in a box....that's where the problem begins. A doesn't fit in a box either. That's why I think multiple opinions are so important in her case and her GI reminds me of that frequently. And more often than not her GI and Rheumo disagree on things based on their own experiences and educated guesses.  I don't know what the right answer is for Grace, but it seems you are at a standstill with the insurance at this point so you have some time to decide. What does your GI want to do?


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## Maya142 (Dec 24, 2014)

Very weird - I specifically have asked our rheumatologist in the past - she says she almost always uses 6 weeks intervals for Remicade in JIA (technically was JSpA for my girls), sometimes every 4-5. We also have BCBS.


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## Maya142 (Dec 24, 2014)

I agree with MLP - what about MRI evidence of her worst joints? For M that has been her knee, SI joints and hip - and MRI's are FAR from normal, so maybe that why insurance is willing to pay for 20mg/kg of Remicade every 4 weeks.


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## crohnsinct (Dec 24, 2014)

Yeah, sorry I don't know a lot about JIA but I can say that 8 weeks is rare at our infusion center whether or not it is IBD or Rheumy.  As a matter of fact thinking about it now a lot of the rheumy patients are at 5 weeks.  

Keep fighting and drowning them with evidence!  They will see the error of their ways.  What ever happened with the levels test?  Although, I am afraid that will add yet another insurance issue to your list.


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## Farmwife (Dec 26, 2014)

The GI mentioned testing the levels and warned us that we might have to pay.
Right now with Christmas and starting a new business, paying $250 is not going to happen.

The only thing left for the GI to do is a scope. Her fc came back at 17, which is great but she's always had normal fc test, despite a scope saying different.


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## Farmwife (Jan 7, 2015)

Just updating for any other parents that have to go through this.

I called our insurance company and asked for a case manager 
(your doc might have to request one), 
she was great and sorted out what was happening.

I was told to file a grievance, which I did on-line.
 I was told to write in my "mommy's words" why Grace needed this treatment.
Now I wait 15 days to hear their verdict.:yfaint:


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## araceli (Jan 9, 2015)

:goodluck:Sending positive thoughts and vibes and whatever needed for the insurance to approve the treatment.


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## Farmwife (Jan 11, 2015)

I had a message left from a women at the grievance center 
of the Insurance Company, that the grievance has been accepted
 and on the 27th of this month the Board will meet to discuss Grace's case. 

*VENT...............Why is this up to a Board of Strangers and not her Doctors????*


 Pains and problems are returning
 and now we have to wait till the 27th!:voodoo:


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## crohnsinct (Jan 11, 2015)

Well I could go into the history of why but I don't want to bore you. 

Is there any way the GI could get her in for scopes sooner?  It is possible that results of the scope can add to your argument!  

Remind me...have you also asked the state insurance to cover the treatment and have they denied?  Are you also filing a grievance there?  I know one time you said if private insurance won't cover it neither will state but our GI tells me time and again that his state covered patients get a lot more covered than the private patients.  They even get that $2,500 Prometheus test covered.


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## Farmwife (Jan 11, 2015)

Her state will not cover every 4 weeks because the private won't. I've already asked.

I could call and ask for a soon date for scopes but getting it the first part of February was a squeeze in.

And YES, it was the GI's idea of scoping again to hopefully tell between UC and Crohn's.
She was/is hoping to use this to push insurance to cover Remicade.
But there is a lot of uncertainty with the scopes showing anything on all these drugs.
Which is great for her but bad for insurance purposes.:ybatty:


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## my little penguin (Jan 11, 2015)

Squeeze in scopes are the next day for us.
A week if actively flaring and the Gi apologizes if we wait that long.
A few weeks really isn't squeeze in unless you are waiting for a specific Gi since most are scoping everyday -just maybe not her Gi 
Given the review and the fact she is flaring I would call the Gi and explain again.
As far as the state insurance -request a letter of denial in writing and file a grievance there as well .


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## Brian'sMom (Jan 11, 2015)

I can't remember.. Did they also deny it for every 6 weeks also? That would at least be sooner than waiting for that every 8 week appt


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## Farmwife (Jan 11, 2015)

Yes and no.
The Rheumatologist said the Insurance is not budging on the 8 week mark for his group of kids (Grace is just one of them).
Plus the doc, he doesn't want 6 wks for Grace he wants 4. But yes I thought the same and have asked. I wonder if it gets denied if he will back down and try it at 6.


Off topic a bit, but are these flare ups after the Remicade wears off causing a resistance to build against the drug? I'm nervous she's going to fail it anyway.


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## crohnsinct (Jan 11, 2015)

Farmwife said:


> Yes and no.
> Off topic a bit, but are these flare ups after the Remicade wears off causing a resistance to build against the drug? I'm nervous she's going to fail it anyway.


This is why I have been pushing the levels/antibody testing.  No sense in moving to 4 weeks if at 8 she has a sufficient level in her body.  That would mean she has lost response to the drug.  Same thing with antibodies but I would think you would start seeing reactions there.


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## crohnsinct (Jan 11, 2015)

Farmwife said:


> And YES, it was the GI's idea of scoping again to hopefully tell between UC and Crohn's.
> She was/is hoping to use this to push insurance to cover Remicade.
> But there is a lot of uncertainty with the scopes showing anything on all these drugs.
> Which is great for her but bad for insurance purposes.:ybatty:


I would think if she is flaring it will show on scopes and biospises regardless of meds. 

For insurance purposes it shouldn't much matter whether or not she has UC or Crohn's.  I thought the issue here was she was never officially dx'd with either but rather a precursor to IBD...but I may have fallen asleep at the switch for awhile.  

I know it is hard dealing with two different dx's, two different docs and two different insurance companies but you can do it! 

I would have docs call the state insurance also.  They talk insurance better than we can.


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## crohnsinct (Jan 11, 2015)

Farmwife said:


> Yes and no.
> The Rheumatologist said the Insurance is not budging on the 8 week mark for his group of kids (Grace is just one of them).
> Plus the doc, he doesn't want 6 wks for Grace he wants 4. QUOTE]
> 
> Sorry but this would peeve me.  What doc would let a child suffer an extra two weeks? I get he/she wants what they want and doesn't want to bargain down but we aren't buying a car here.


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## my little penguin (Jan 11, 2015)

You can't tell without the antibody test to determine antibodies and trough levels .
Pretty standard prior to moving up dose or increasing amount .
Are they still at 5 mg/kg or did they move that up?
Since higher amount of drug is sometimes the sane as lower amount at a higher frequency ..
Either way you still need the testing done
Guessing really isn't going to help anyone.


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## Farmwife (Jan 11, 2015)

Oh I remember more..........
The Rheumy nurse said if they put in for every 6 weeks that null and voids having to file the grievance for every 4 weeks. The doc wanted me to push for every 4. Does that sound right?

I have a thought and maybe totally off base but here goes.
Theirs a group of kids the doc is trying to get covered, right. 
So maybe he wants ALL us parents to push (file grievances and such) at the same time,
 thereby forcing all of us to get covered.
 Fine, but what if the children suffer until then? Is that right or wrong?
I do think calls should be made to question the doc, maybe I'm not understanding his motives properly.

I'm calling the GI and see if she will move up scopes and  ask the Rheumy to test the levels, if not I'll ask the GI.


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## Clash (Jan 11, 2015)

If I'm understanding you, it would only make sense if all the children had the same insurance company and even then not much because it would seem to be at the detriment of the kids. 

Why would he want to push for 4 weeks when he could first go for six? And is this entire group made up of kids that he hasn't determined to be CD or UC? Or kids that have both joint and GI issues? It seems there would be too many variables with disease presentation and response to treatment to lump a group together that may respond to 4 week schedules w/o first attempting to move from 8 to 6.

Each time C's dose has been changed it had been due to testing results or symptoms of a flare occurring. We never had a problem with insurance, even when we had to move to high dose remicade. But I think that would've been because we went from 8 to 6 to upped dose to addition of immunosuppressant suppressant, then to five weeks.

I hate to see that she may have to struggle until this gets settled. I hope she finds relief soon.


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## Maya142 (Jan 11, 2015)

I think FW's rheumatologist is coordinating this if I'm remembering correctly.

In our experience, rheumatologists rarely (if ever) test Remicade levels or antibodies. They just switch the dose/frequency based on response. In our case, insurance agreed possibly because both my girls were already on immunomodulators and had failed multiple anti-TNFs.

Every rheumatologist we have ever asked has said they don't think the Remicade levels test isn't accurate/correlates well with symptoms/ doesn't exist (???!!). 

It's so weird that GI's use it all the time and rheumatologists don't.


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## Clash (Jan 11, 2015)

Ahhh...rheumatologist. I haven't had great luck with them but C has only seen two. I'm hoping the next is going to be a good fit, especially since our GI said he works in tandem with him often.

Still, I don't see why the rheumatologist would hold out for 4 weeks with the patient flaring or struggling, especially one so young. And even with joint issues the disease presentation and severity can vary so much between patients why wouldn't you try 6 weeks first? I know even this last sucky rheumatologist was quick to say she had more patients on 6 weeks than 8 because the disease usually warranted it.

Hope things get worked out quickly!


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## Farmwife (Jan 11, 2015)

Yes Clash, the group of children all have the same Insurance group! I don't know if any have IBD.
Grace is classed undetermined IBD. I was told that Insurance want to see UC or Crohn's and will give a hard time if its not one of those. 
However, her JIA is classified severe. That's why she gets Remicade in the Insurance's mind. GI is hoping to change that by scoping to figure out which IBD she has.

I have a lot of questions for tomorrow. Thanks everyone for the insight.
Maya's right, I've asked the Rheumy to check levels but they say no.
The GI will do.........I'll make sure of it.


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## DanceMom (Jan 11, 2015)

When a diagnosis isn't nailed down it can make things a little sketchy. That being said, I'm not so sure I'd be willing to jump from 8 to 4 weeks right away. You have no way of knowing that 6 weeks wouldn't be effective for her. Our doctors tend to make changes in smaller increments and I'm much more comfortable with that. I'm not familiar with the tests the others are mentioning but it definitely makes sense to check levels to help determine the real problem. A fair comparison would be that A's trough levels of IgG are checked at each infusion. This helps her doctor determine if her issues are related to insufficient levels requiring her dose or schedule to be altered, or another problem  entirely.


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## Maya142 (Jan 11, 2015)

:lol: Our GI does it too, even when M's joints are the problem! 

Both my girls started at infusions every 6 weeks and then went to 4 weeks. Possibly, based on the severity of Grace's JIA, the doctor wants to get it under control ASAP. Of course, if getting the infusions every 6 weeks approved is easier, then he's really doing her a disservice.

Doctors can be so difficult! Sending hugs.


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## crohnsinct (Jan 11, 2015)

Farmwife said:


> Oh I remember more..........
> The Rheumy nurse said if they put in for every 6 weeks that null and voids having to file the grievance for every 4 weeks. The doc wanted me to push for every 4. Does that sound right?
> .


No, this doesn't make sense.  It may close the chapter on this particular request for 4 weeks but there is nothing that says after trying and failing at 6weeks you can't file a new request for coverage for the 4 week schedule.  It is not a "you get one shot for coverage" type thing.


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## Farmwife (Jan 13, 2015)

Update- the women still hasn't called me back that deals with the grievances.:voodoo:

My hubby and I'd asked the rheumatologist nurse to ask the doc if 
Grace could try Remicade every 6 weeks and try a new med used for just her JIA. 
Hopefully both meds would work better. 
The nurse was less than thrilled but it's not her kid. She said she have to ask the GI what she thinks. 
Fine go ahead nurse:tongue:,I already called a gave them a heads up. 
It's been 2 days and no call, so hopefully their thinking about it.

I'm still going to keep the grievance filed until I get word otherwise.


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## crohnsinct (Jan 13, 2015)

Farmwife said:


> Update- the women still hasn't called me back that deals with the grievances.:voodoo:
> 
> My hubby and I'd asked the rheumatologist nurse to ask the doc if
> Grace could try Remicade every 6 weeks and try a new med used for just her JIA.
> ...


What woman?  At the insurance or the doc?  I thought the insurance has it and is meeting on the 27th.  Please don't tell me you hit a roadblock! 

I would definitely keep that 4 week grievance alive and kicking.  You never know, they may approve it and then you just have to wait four weeks from the 6 week date which btw aren't you coming up on 6 weeks any day now?


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## Farmwife (Jan 13, 2015)

The women at the insurance company. No not 6, we just entered week 4.


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## crohnsinct (Jan 13, 2015)

Oh I didn't realize she was supposed to call.  I thought they had everything and were meeting on the 27th.


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## Maya142 (Jan 13, 2015)

> My hubby and I'd asked the rheumatologist nurse to ask the doc if
> Grace could try Remicade every 6 weeks and try a new med used for just her JIA.
> Hopefully both meds would work better.


What med are you talking about FW?
I hope you can get this straightened out soon. I hate that Grace has to suffer because of insurance company.


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## Farmwife (Jan 13, 2015)

I have rewritten this a few times to hide my anger better.

The lady called from the insurance company. 
She has started piling together Graces' case. 127 pages so far.
At this board meeting on the 27th.
I can be there in person, on the phone or forgo it all together. 
I asked her if someone could take my place, like a doctor, she said yes.
I also asked her to make sure she had pacific medical studies, reports and such for the meeting. 
I think she was floored at my understanding or I  could be arrogant.:shifty-t:
I'll touch base with her in a few days.

The physician assistant from the rheumatologist  called. I knew I had stepped on toes at this point.
I'm glad she did because she told me everything.
The doc tried it all.
The insurance is flat out refusing for this group of kids 
but my Grace is the only one that's ever had to go to this length. 
the PA said they all want her to stay on the meds and not switch things up. 

I'm just upset tonight.


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## Farmwife (Jan 23, 2015)

:soledance:Well praise the Lord they approved the Remicade for every 4 weeks.:soledance:

The rheumatologist nurse was so happy for us. 
She thinks it was going ahead with the board meeting that they backed down.

Sad thing is their is still more children that are suffering today because the insurance company are trying to play doctor and God.
I was told one mother is going to Fox news with her story. I was willing to do it if the approval was denied again but thankful I don't have too.


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## Maya142 (Jan 23, 2015)

Farmwife so happy for you and Grace!! So glad they finally approved it :hug: I hope it works like magic!!


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## Sascot (Jan 23, 2015)

Hooray! So glad they approved it. Hope it makes a big difference!


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## DanceMom (Jan 23, 2015)

Welcome to the every 4 weeks club! lol


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## DustyKat (Jan 25, 2015)

This is so fab to read Fw! :dusty::dusty::dusty: 

I so hope it does the trick for your lass and she is soon feeling on top of the world, bless her. :heart: Good luck! 

Dusty. xxx


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## CarolinAlaska (Jan 28, 2015)

Yea!


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## Farmwife (Aug 9, 2016)

Update on this thread.....

For the second time in a year and a half they ( Priority Health) are all out denying Grace's Remicade.:ack:

During the day the rheumatologist has already appealed for the second time.
He'll make the call personally tomorrow and if nothing....
We start the appeal process...... AGAIN!

She's do this Thursday for her next Remicade!


Feel free to read  the previous posts to see what a pain it was last time.


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## pdx (Aug 9, 2016)

Ugh!  So sorry that you have to keep going through this.  I really hope it gets resolved easily and quickly.


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## kimmidwife (Aug 9, 2016)

That is beyond terrible!!! What the heck is wrong with these insurances? Please keep us posted!


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## Maya142 (Aug 9, 2016)

Really sorry to hear this. We are dealing with it too for M (for a dose increase). It's a real pain. I can't believe they are denying it completely -- that is crazy!


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## my little penguin (Aug 9, 2016)

We Havent had this so far even with dose increases 
But I can't begin to imagine 
Hugs


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## Tesscorm (Aug 10, 2016)

That's terrible!  What an added worry!  I don't understand how they can flat out refuse 

Good luck, I hope you can get it resolved quickly! :ghug:


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## Sascot (Aug 10, 2016)

That is so awful, just more stress for you! Hope it gets resolved soon


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## Farmwife (Aug 10, 2016)

Denied for third time.:mad2:
Had to cancel Remicade and they won't even reschedule until the order is approved.:thumbdown:
The rheumatologist is making the call tonight or tomorrow to the insurance company. 
I'm calling the case manager as we speak from the insurance company.

Maybe something will get thru to these people that 
mother's to chronically ill children don't back down!:yfrown:


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## Pilgrim (Aug 11, 2016)

Oh Farmwife, that is terrible. I wonder if there is a "compassionate use" program through Remicade? 
I know, it shouldn't be necessary. The specialists prescription should be enough...
There should be different insurance procedures for kids. We were even denied coverage for Entocort, which was ridiculous. But I know there is no way to cover Remicade out of pocket even once.
I hope they got an earful.


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## Farmwife (Aug 11, 2016)

Case manager is on place and to my surprise the rheumatologist has already been dealing with this longer than two days and has already put an appeal thru.
I think we'll have to take it all the way again.
I did find out that the insurance will approve every 8 weeks but nothing sooner.
So by the time 8 weeks come around she'll be pooping blood and joints unable to bend. Great!:voodoo:


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## Tesscorm (Aug 11, 2016)

I've just reread the entire thread, and maybe I'm missing something...  but, from what I understood, insurance had approved 4 weeks and now they've suddenly said 'no'?!?!?  I don't get how can this be done without any changes to Grace's condition??  ONce the approval was in place, what is their reasoning to change their approval?


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## Farmwife (Aug 11, 2016)

Tess,
Time line of 18 months was put in place to review the use of Remicade. Both insurance and rheumatologist agreed to this.
 Most treatments in the US have this agreement ( time length may very) but most will let you continue if you need longer.
 Of course her insurance company wants to fight us on it!
Basically the insurance wants us to prove why she still needs every 4 weeks.


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## Tesscorm (Aug 11, 2016)

ok, makes sense.  Isn't right! but now makes sense why this has started up again. :ymad:

Ugh, I am sorry you have to deal with this!  Horrible that anyone (or parent of) sick should have these additional worries and frustrations!  

I hope it's resolved quickly! :ghug:


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## my little penguin (Aug 11, 2016)

Ours requires reapproval every three to four years ...
Surprised by the 18 months though 
Ours is for drug approval but does not require increase in dose or frequency approval


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## Tesscorm (Aug 11, 2016)

I'm not looking forward to when we'll have to address this with S.  For now, until he's finished university, he's under my insurance (I've never been told we have a renewal process??) but, once he's finished school, he'll no longer be covered as my dependent.  

There's a very good chance he'll be offered a full time job at my company, since he's worked here the last three summers but...  no guarantee.  I'm assuming there will be no problem with approval if he does work here as it'll be a continuation, just under a different policy holder name but, again...  no guarantee until it's signed, sealed, delivered!   And then, of course, even more uncertainty if he doesn't work here...  

Too early for me to worry too much yet but... I'm already dreading any procedures, etc.  Went through a bit of it when my insurance denied EEN.  We tried appeals, GI clinic and nutritionist sent info, etc. but it was still denied.


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## Farmwife (Aug 11, 2016)

my little penguin said:


> Ours requires reapproval every three to four years ...
> Surprised by the 18 months though
> Ours is for drug approval but does not require increase in dose or frequency approval


:yfrown: I'm not surprised mlp.
We had such a fight before that I can see them bargaining for the time line.


Ok, for future reference for those with priority health....
You can ask for an "emergency" expedited appeal.
On my grievance page I was told to write that I want this put as an emergency appeal and they have 24 hours to get back to me if they deem it urgent enough.
If approved they have 3 days to accept or decline our request.
If they don't think it's worth an emergency appeal it could take up to 30 days.:yfrown:
We might be able to get it because antibodies can build to this drug.
Plus, Grace will will suffer. You think that would be good enough reason but I guess it's not!


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## my little penguin (Aug 11, 2016)

The only issues with the antibody thing is every 8 weeks is the standard and up to 12-16 weeks for antibodies to start if it's held 
So not sure that is going help your argument 
If they knew the approval was only for eighteen months - why didn't they start this process sooner ???
I know Ds has had his reapproval process twice now 
And the doctors office doesn't let it get even close to when the expiration for review is 
I think they were six months ahead so there wouldn't be a gap in medicine


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## Farmwife (Aug 11, 2016)

Mlp I'm not sure why they didn't start sooner. 
Maybe they thought they wouldn't have an issue.

Good news,
After reading my grievance they approved one dose to be given ASAP. :dance:
Bad news,
They still are saying it should only be every 8 weeks. Still not approved!
So the hearing is schedule for the 24? Of this month.:voodoo:

At least she can get it on time"ish'.


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## Lisa (Aug 12, 2016)

UGH...at least you were able to get this late dose....my insurance requires a recertification every 6 months!.....thankfully the staff at my GI's practice are on the ball and the justification is sent in in advance of the expiration.....I almost didn't get mine 2 cycles ago because the insurance company screwed up and 'lost' the paperwork.....they found it the day before my infusion and I was able to go ahead.  

Good luck with everything, hopefully those people will pull their heads out of their rears and get on the ball!


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## kimmidwife (Aug 12, 2016)

That really stinks! I hate that the people sitting on these boards and making these decisions are not medical people for the most part but are all about the finances for the insurance company!!!!


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## DustyKat (Aug 17, 2016)

I’m so sorry to see that you are having to deal with this all over again Fw.  I hope all goes smoothly form here on in and long term approval is granted ASAP. :ghug: 

Approval is required here every 6 months as we have to prove to the government that the drug is working. Thankfully if all is going well it really is just a rubber stamping by the GI as I haven’t known it to be denied.


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## polly13 (Aug 18, 2016)

OMG Farmwife so sorry you are having to deal with this again!n - it must be so frustrating and upsetting for you.  I have no advice as things work very differently over here and we dont have to apply for drugs to be covered once they have been approved for use by the medicines board.  Will be thinking of you and Grace on the 24th and hopefully you will have the outcome you need from the hearing. 
Polly


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## Farmwife (Aug 21, 2016)

Meeting changed to September. 
They asked if I would like to be involved and I said. ............
Why yes,  I would love to be. :heart:
Her doctor will be talking on my behave just like last time. 
However,  they settled the morning of, so it never came to the meeting. 

Here's the kicker. ...........
We are getting new insurance two days after.  
Full coverage plus eye and dental and we won't need pre-approval. :medal1:

So basically I'm just being a stinker and fighting it anyway.

They picked this fight first!


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## Farmwife (Sep 7, 2016)

It went all the way to the top!I was shocked, 
 I thought for sure they would give in like last time. :devil:


:thumleft:
But it got approved! 
Grace can have her Remicade everyou 4 weeks. 

Now on Friday I get to call and cancel the stupid insurance! 
But first I'll make sure the new insurance is up and running.


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## pdx (Sep 7, 2016)

Farmwife said:


> It went all the way to the top!I was shocked,
> I thought for sure they would give in like last time. :devil:
> 
> 
> ...


Good for you for taking it all the way to the top, despite knowing that your insurance would be changing--hopefully it will help others in the future.


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## Sascot (Sep 9, 2016)

Glad it got approved! Ridiculous it got that far.


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## CrohnsKidMom (Sep 10, 2016)

Great news!  Just make sure that new insurance can kick in where the old leaves off.  Sometimes there are waiting periods, etc.


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