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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.
 

Maya142

Moderator
Staff member
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 :(.
 
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.
 

Tesscorm

Moderator
Staff member
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. :ymad:

I do hope something 'clicks' and you get a quick answer!
 
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.
 

my little penguin

Moderator
Staff member
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 )
 

my little penguin

Moderator
Staff member
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
 
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.
 
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.
 
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.
 
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.:(
 

Maya142

Moderator
Staff member
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.
 

CarolinAlaska

Holding It Together
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.
 
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.
 
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.
 
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.
 
You're scaring me Farmwife. Our insurance is changing at the beginning of the year and DS is due for an infusion on January 20th. The new insurance requires pre-approval and we were told that since he's getting a higher dose than the FDA recommendation, that it will likely have to go through the appeals process. I'm very, very nervous and will be on the phone at 8am on January 2nd to get the ball rolling.

On a positive note, maybe(?), we got a letter from the hospital saying that they couldn't reach an agreement with BCBS so they are no longer accepting them. Thankfully, BCBS is what my husband's company is switching away from!
 
Update:

As of last week........
Grace saw the rheumatologist and was dx in a systemic flare.
Not only joints but gi, lungs, bladder, skin involved.
Boy were they mad!
We all decided grace didn't have time to wait so the rheumatologist put her on an adult dose of Humira.😞 and extended her prednisone.
On Monday saw the eye specialist and dx mild eye inflammation.
That day I get a crazy letter from the insurance saying that Remicade was payed for the month of October. WHAT?
I called and they said that on the 10th (she was at the rheumatologist on the 9th) she was approved for her Remicade.
Called the rheumatologist and told the nurse, she was happy but not surprised because the legal lawsuit would have been huge!

So on Monday she gets her Remicade!
 

my little penguin

Moderator
Staff member
Glad it straightened out
Finally :dance:
But I don't understand October part ???
It's December

Fwiw ds was on adult dose of humira at the start 5 years ago
Most kids need that dose
 
Mlp
October was her last infusion of Remicade.
They refused to pay the bill up until this week.

Mehita
I hope it works or out for him.
What's crazy is we checked and doubled checked this insurance before the switch.
Even her rheumatologist nurse said it was a good insurance.
Even my husband's coworkers said they've never had an issue with it.
It may comes down to money, in my opinion.
 
So sorry to hear about the misery they have put Grace and her family through. May the healing begin now that she will be receiving her proper medication soon. Such an inhumane process for anyone to go through, but especially for a child.
 
Yes to the eye drops. Twice a day for 2 weeks. Does that sound normal?
She also starts her wean of prednisone today, from 30 to 20.
Hopefully nothing gets worse.
 

my little penguin

Moderator
Staff member
Which eye drop ?
Ds uses fluromethasolone
Since he tends to need it a lot and less is absorbed by the eye due to the fluoride ion
Ds typically has it 3x a day for a week then
Weans to 2x a day for a week and then 1x a day for a week
But...
He was on the same stuff daily for almost theee years straight so not a good example
Which may be why he gets high dose then weans slowly

The first time he may have been on pred drops
But promptly flared at the end so hence the longer term steroid drops

Thankfully he has been off then daily and only has had three flares since June
 
It's the prednisone drops.
The pediatric eye specialist said he her inflammation was very slight but wanted to treat it so it didn't get out of control.
We're both thinking that Remicade will put it back right.
 

Maya142

Moderator
Staff member
My husband uses those - Predforte usually. I'm assuming she has either uveitis or iritis?
Hope the taper goes well. Fingers crossed.
 
Lol, if we don't laugh we cry, right? ..............
Given the go ahead to resume Remicade and she gets sick over the weekend.
Now have to wait.
The pain is getting bad but she can't get it until the virus is gone!:ybatty:
 
I'm sorry to hear you had problems with your insurance, we are also in Michigan and we have priority health, they did approve for Michael iron infusions and the Remicade, it was fast. Maybe because we already met our deductible by then.what part of Michigan you are.
Lizette
Michael dx 6 current 17 1/2
Remicade 7.5mg every 8 weeks since end of aug 16
Vitamin d
 
Glad she finally got the approval. Praying for the virus to resolve quickly and she can get her remicade and back to feeling better.
 
She received her Remicade on Friday.
The virus turned into a crohns flare.
We have a Gi appointment in a couple weeks, hoping it will calm by then.
She's weaned of of prednisone but no one is willing to have her back on it.
I agree but to see her back here again after so long of being well (gi wise) is very heartbreaking.
All because of her insurance.

The good news is her arthritis settled way down and now just her knees and bottom of her feet hurt. I'll take it!

The bottom of her feet, talking about the Achilles heel is new for her.
Does anyone else's have this type of pain?
 

my little penguin

Moderator
Staff member
Yes
Common in JSpA
For ds
Volteran gel
Ankle /heel exercises -writing abc
Windows washers etc
Heel stretches
Heel inserts (dr scholls )
And swimming

Good luck
 

Maya142

Moderator
Staff member
Yes, very common with JSpA!

We got custom made orthotics (from a podiatrist) and those made the biggest difference for my daughters and my husband. Insurance covered them. We also use Voltaren gel. Heat (such as soaking her feet in a bucket of hot water) also helps a lot.

Stretching will also help. You can look up simple stretches online. My younger daughter saw a PT who taught her some stretches - that helped too. Make sure she is walking normally - often kids with heel pain walk on their toes which can cause knee or hip pain.
 
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