So.....life has been so busy lately....the adventures never end....but this one is too perplexing not to share. And children....ask Sears, Hollywood Video or any other place of business what happens when you mess with me. Although....this isn't retail....perhaps I am expanding my horizons.
Many of you know, but some of my new friends may not, that we have had a series of adventures in the medical realm throughout this adventure known as life. One of the greatest (and by greatest I mean time consuming.....because our trials are relative, based on what we need to learn) is Baylee's plate of adventures.
Among a host of things neatly piled on her plate of life, are arthritis, uveitis, iritis, neuropathy, erythromylalgia....yada, yada, yada, yada (and no I didn't list them all, I have to do that often enough on medical and insurance form, I most certainly don't want to list them in this forum!).
As we have gone through the different phases of Baylee's health, we have tried different treatments, therapies, medications....blah, blah, blah. But in order to put things in perspective, I need to give a little background so you can understand why I am so wound up.
Diagnosis with Arthritis at age 2. Anti-inflammatory's are the first step. When they don't work, you move to Methotrexate. When that stops working you add Enbrel/Humira or a cocktail of other medications that help balance the body attacking it's own cells. We have done them all.
Diagnosis with Uveitis at age 3. This is eye inflammation, common in girls with Juvenile Rheumatoid Arthritis. This is what spurred us on towards "cocktail medicine".
Diagnosis with Iritis at age 4. This is worse eye inflammation, not so common. But this is what spurred us on towards stronger "cocktail medicine".
All-in-all everything we have done medically is to keep Baylee walking and seeing. That's it. So as we have moved forward, things are stable, not stable, stable....that's just kind of how it works. (For information on how uveitis and iritis works....this is our favorite (and only) charitable organization that is able to bring national attention to this disease www.pinkburstproject.org) And as we continue to fight these disease, and Baylee grows, we have to adjust medication.
Eventually....the medication just stopped working. Time for a new cocktail. And as expensive as her medications have been....oh man.....that was nothin'!
In June of 2010, we began Remicade treatments. Intravenous therapy....and for any of my friends who have had, or have had a loved one with cancer, please forgive the comparison...but it is the closest thing we have. Basically it is chemo. But it is chemo with no end. She started at therapy every 2 weeks, then every 4 week, then every 6 weeks, then every 8 weeks (which was too far apart for her body to stay stable), then every 6 weeks, then every 4 weeks....you get the idea.
For reference, it took a solid year before we were able to stabilize her eyes and take a step back from the threat of blindness.
In the mean time, we got this crazy idea to move to a new state....blah, blah, blah. Once we got here, we had to get into new doctors, have the talk to her old doctors and get everyone to agree on the same therapy. SUPER FUN!!!!
But, thanks to our incredible medical professionals from Utah, and their justification, Baylee's therapies have continued. Some adjustments (because it has been difficult to keep her stable). And because life is life.....we have switched insurance carriers.....TWICE!
So....out of the blue in January, we receive notification from our new insurance that Remicade is not covered. It is considered an experimental treatment. WHAT????? They referenced her iritis/uveitis on the rejection letter and I wondered if that is why it was denied.
I call the doctors office insurance specialist...she says it happens all of the time....especially in January. Happens all of the time, they have already prepared the appeal, and the doctor has already done the peer-to-peer review with the insurance carrier doctor....and to go ahead and do her next treatment in February. At $7,000 a pop....why not?
So we do the February treatment and the doctor and I both receive rejections to the appeal. And the doctors office gives me these options:
1. Fill out the paperwork for their program to have the manufacturer pay for the medication (where income is not a factor....yeah, right)
2. File a parental appeal.
3. Pay the $7,000 a month.
So I call the appeals department at the insurance company, which proceeds to tell me, they will only deal with me in writing. I ask one simple question. What diseases is Remicade approved to treat? She can't tell me that. She is in the appeals department, she doesn't know about any of that. But she can transfer me to a pharmacist who can help me with that.
So I talk to the pharmacist. And he says....why did she send you to me? I don't know anything about claims and coverage....I just am the specialist for what the drugs treat and the different therapies. Yeah, I know. It totally wasn't him....it was the appeals lady who just didn't want to talk to me anymore.
So I call the insurance company again to ask what diseases Remicade is approved to treat. The lady I talked to said Remicade is approved to treat Juvenile Rheumatoid Arthritis, but it is not approved for uveitis and iritis.
So I call the doctors office insurance lady back to ask again if it was denied because of the billing code. She said that all of the correct codes were referenced, but told me who to ask at the insurance company and that we would talk again on Monday.
So I call the insurance company back. I explain that I think everything was denied because of an incorrect diagnosis code. And *CLICK*, she hung up on me. I guess work was optional for her today.
So I call back again. I talk to the Medical coverage peoples. She was great. I explained the entire thing, and she said it should be covered. She asked if she could put me on hold so she could talk with her supervisor. Then she and her supervisor came back and said they can't figure out why the claims keep getting denied. Remicade is approved for the treatment of Juvenile Rheumatoid Arthritis. However, it is NOT approved for uveitis and iritis. Well, that is what they said earlier. But this time, they transferred me to the Rapid Claims Resolution Center, so that I could find out what was being denied so that I knew how to prepare my appeal.
FINALLY! That is what I needed! How on earth could I fight the insurance beast if I didn't know which part of it I was fighting.
Soooooooo, I talk to Kira in the Rapid Claims Resolution Center. I give her all of our information. And for the 457th time today, I tell our sad, sad story. She pulls up the claims and says, "Oh, I see what the problem is. It has the correct code. It has the other codes as well. This type of claim can't be processed through the system automatically. It is supposed to be flagged and processed manually. " Huh? I asked if it was being denied because of the diagnosis codes. "Juvenile Rheumatoid Arthritis is the primary diagnosis code, which is correct. But this type of claim can't be processed automatically because of the type of treatment, and the type of claim."
So it was just automatically rejected? Yup. How come our appeal was rejected? Because of the codes. It was right.....but there was too much information. And the computer....regardless of all of the documentation.....regardless of the doctor, taking his time and doing a peer to peer review.....the computer does what the computer does and through all of it....no one thought to check the claim to make sure the system was processing it correctly.
According to the Rapid Claims Resolution Center, everything will be paid and we will have updated documents in 10 business days.
But, "Aye, there's the rub...." Baylee has her next treatment in 7 business days. Do we risk it and risk another $7,000 (especially since it is also the day she has procedures on 4 joints to reduce the pressure from the inflammation)? And because I won't know for 10 business, I still have to mount an appeal, fill out assistance paperwork (for assistance that isn't guaranteed)....and figure out how to pay the $14,000.....just in case.
So the stunning part....is that the doctors office has never heard, experienced or even knew that this kind of thing could happen. It is unheard of to received an appeals rejection due to the computer system not being able to process a claim automatically.
A conundrum to be sure!
Lessons Learned
1. I will fight for my children. I'm not done fighting.....can you tell?
2. I have sooooooooo many thoughts on insurance, government, regulation, greed, corporate corruption...blah, blah, blah....and this just riles me up.
3. Is there a reason I can't process stuff like this unless I write it down? Probably, but not going to figure it out right now.
4. Ugh! I hate having to fight for things! I'm having such a Monkee's "Can't we all just get along?" moment!
5. I suppose we would all do whatever is necessary to protect our children....and perhaps by one person standing up, someone else's children might get protected too. Right now, I just want my daughter to receive the treatment that keeps her from going blind and becoming immobile....is that too much to ask?
