>Blog Interrupted…….


My blog is usually a place for my own scrapbook of the family, for my free therapy pondering of mom issues, and talking about my fav subjects: my kids, catholic life, adoption issues and so on.
But today I would like to interrupt our regularly scheduled programming for a minor rant against the infernal health insurance industry… or as I prefer to refer to them: those soulless miscreants.
Recently I got in the mail one of those blasted letters stating that the insurance company will no longer pay for my daughter’s seizure medicine, the name brand version.  It said we must switch to the generic.
Now I’m not one to be all snooty about name brand anything.
I may love a name brand snooty fabulous purse, but I don’t buy them.  My sister gives me them for birthdays and I swoon with joy.
I may love certain names in oh, wine, or chocolate.  And I do buy them because they are so ridiculously much better…..
But I am all about getting t-shirts and whatnot at target or wherever, to save a buck and have almost exactly the same product.
I love a flea market and haggling for a deal; one my son’s favorite sports is haggling for generic goods with street vendors. 
I “get” the generic concept; we live it when it works.
Unless it comes to the concept of a medicine that can save a life.
Especially if that life is my daughter’s.

Perhaps you might think I’m being overly dramatic.
Perhaps I am.
But look at this face:

If this face was your precious girl….you might feel a little dramatic too.
You too might feel like strapping on your gear and going on the warpath for your girl.
Your sense of right and wrong may have just taken a slap, no, a right hook, in the face.
And you too might know that this needs to be pursued, or at the very least needs to be shouted out…..so that others will see when the insurance industry once again is caught out being hypocrites who only care about the bottom line, despite their ads with deep voiced comforting announcers, Norman Rockwell settings…oh so poignant .

This girl of this beautiful face had a seizure that could have killed her eight years ago.
It was a Status Epilepticus seizure.
Yeah, wikipedia that one, read it and shiver.
Hers lasted for HOURS.  Yes, that’s not a typo.  Hours.
She spent days in the PICU.
We were told she should never be put at risk to have another seizure like that again.  Status seizures are serious biz.
Seizures beget seizures and so we needed to make sure we found the right seizure med and stay on it.
Easier said than done, that.

After hacking through the medicine jungle for months and years…we finally did settle down on one seizure med. Others had allowed her to have countless absence seizures which we were unaware of (because you couldn’t tell they were happening, they weren’t physically dramatic like the first big one).  But then we got smart.
We got a better pediatric neurologist and he figured it out and switched meds to one that finally worked.  Seizures = controlled.  Our doc, who we love, has said for eight years, don’t use the generic as the quality control can vary between makers and the name brand is the only way to go. With seizures and this medical history, you must insure the coverage – medically speaking.
So that’s what we did, because it worked.
Breath a big sigh of relief.

Until now.  And now, I’m incensed.
Because now an insurance company, some drone behind a desk crunching numbers, is telling us, AND her doctor, that they flat WILL NOT allow him to prescribe the name brand seizure med for my daughter.
Wait, I should clarify: They WILL allow it, of course, they cannot stop that.  But they will NOT pay for any part of it.  Not until it fails.
Read that again:
Not until it fails.
Only after failure will they allow coverage for the name brand. 
A failure in this case can only mean a seizure, which – sure – might be no big deal.
Or it might be a bunch of small invisible to the eye seizures we can’t know about until we are baffled by why things are not doing well with her.

Or it could be, maybe, one of the rare Status seizures.  Which, yeah, the odds are low, granted.  But, it happened as her first ever seizure…and ya wanna know the odds of that? I haven’t looked it up, but I’m guessing it’s something along the lines of astronomical.

After getting this letter, I immediately was ticked.  But I laid it down, breathed, and decided to “do the right thing.” I followed the steps to disagree politely.  I called the doc’s office.  They said they will talk to the insurance company, they “were getting a lot of these letters.” (!)  Then my pediatric neurologist called me back.   No go.  What? So I called the insurance company myself, asked for a higher up, was told how to step through the dispute process, ask for a preauthorization (Despite that we’ve been using this med for EIGHT years) form.  They faxed a questionnaire to her neurologist.  He duly answered the questions and then it went to review.  And now, I have the letter, another one, in my hands saying that they WILL NOT pay for name brand.  She has no history of FAILING on the name brand….so she must try generic.

Let’s think about that: the name brand medicine WORKS. It prevents my daughter from having seizures.  So, by all means, we’d better switch to one that is untested and cheaper.  One that is impossible to ascertain quality control as multiple sources may manufacture it.  We must switch away from a medicine made to protect my daughter from having seizures, because it hasn’t failed yet.
Is this what medicine and health insurance/health care has come to in our country?
“If it works, lets switch it”…..?.

 If we were talking about medicine for something minor, not life threatening or impairing…say, bunions, I wouldn’t make a fuss.  Heck, I take generic meds to control my wonky blood sugar: metformin. I’ve taken the generic for so long I can hardly remember it’s name brand.  It’s not the generic plan in general I’m objecting to here, let me be clear.
It’s the risk to my girl.
It’s the principal of the thing.
Because this policy in this case is wrong. Period.

So my option now, thank you greedy giant corporate insurance company bigwigs, is to pay a small fortune every month for the proven safe meds for my daughter…. or take the calculated risk and let her try the generic.  Now, I realize, the odds are that the generic will work fine.  However, it simply galls me that we have to take that risk when the risk outcome is so great…all due to the number crunching of corporate, and despite the ridiculous (and bumped up over 20% increase this year) insurance premiums that we pay for our large family.  I had thought that is why the premiums were so high in the first place.   Can  you say there is no FACE in  healthcare, insurance level, anymore? I can.  It’s all about the stats babeee.

Now, to clarify, this is also not to say that we cannot in any way pay for these meds. It is to say that maybe,  just maybe, our insurance premiums that include prescription coverage should pay for it or for a good chunk of it…that’s what we were told and that’s what it’s been.  Our premiums are to cover the burdensome expenses of medicine, no? Should we just bolt it all and go to catastrophic coverage? Seems so maybe.  But….no.
Fortunately, we can pay for meds…but every dollar we do pay for meds that should be covered, and WERE covered under insurance before is one less dollar to go to oh, tuition, charitable donations, and so on.
It’s a poor use of our resources, considering it’s like a double payment (not poor use to pay for meds for my kid, don’t flame me that’s not what I’m saying).  
In fact, it’s a kind of gouging.
And that’s why I object; why and am simply angry, indeed, incensed.

This change in policy goes to line the pockets of the insurance execs, their stockholders, the bottom line of their plush corporate coffers.
Despicable them.
It doesn’t go to make the health care coverage better or more comprehensive or safer…in fact, it makes it less so.  

I think I’d like to go and have a nice civilized sit down with the head of this insurance company.
I’d like to ask them if they have a daughter.
I’d like to ask them if they’ve life-flighted that little daughter to a hospital.
I’d like to ask them if they’ve sat vigil bedside not sure if or how their girl would wake up, or in what shape.
Then I’d like to ask them if they’d like to take that risk.
I’d like to ask them how SURE they are that generics are “just exactly as good.”

Are they willing to bet their kid’s life on it?
I’ve gotta wonder if they would……

My sweet Sarahbird.  
Her fourth birthday, 
about one month before her Status seizure. 

8 thoughts on “>Blog Interrupted…….

  1. >I could go on for days girl! So unbelievable. Insurance pays nada of Abe, but yet we still pay high premium too. They won't cover therapy, the only prescription for his CP (other than his seizure meds, guess I should check mail) but they will cover the very costly surgeries and hospital stays required when said CP child gets serious skeletal and muscle distortions from lack of therapy! Smart huh?Zero preventative care. Hope you can fight it and win. Sounds like your neuro is awesome. Can you "try" it (not really though) and him say she had an absence seizure. Say she was clearly staring off……isn't this nice? I'm encouraging you to cheat the system but it is SO ridiculous. Sorry, sorry. They simply see a number, not a child and it makes me crazy. Of course I will have to be put on the generic medicine for that!:)

  2. >Emily…I KNOW you know what I'm talking about! And I haven't even started on the utter lack of coverage for all her other stuff, no coverage ever for therapy appts or her doc team appts other than partial coverage for this near….same deal. We've sucked that up for years. But this is the straw breaking this mama camel's back. They are also stopping coverage on one of her other meds that aren't' life threatening in the seizure sense, but they don't like the (different) doc's rx…..but he's the doc who's been working w/ her for 6 years. Sigh. The Insurance industry is reprehensible and idiotic in that if they pay for preventative care they ultimately save on the front end. Abe's surgeries and hospitalization for advancing CP problems….crazy expensive, less than (I'm guessing, but still) his preventative/assist devices/care. Sarah's meeds to prevent seizure….MUCH less than life flight (but we fought for MONTHS for them to pay part of that too), hospitalization, PICA, etc etc etc. And in the PICU a tylenol cost like 16 bucks each (I'm estimating, my memory is foggy)….it's asinine. Let's go have a drink and compare notes! At least some good will come out of this mess then!

  3. >It is despicable. I completely agree with you. The insurance companies have gotten have dug their heels in when it comes to denying meds and services. Twelve years ago when I worked as a family advocate for families with medically frail children, the letters I wrote and the letters of medical justification were so effective. You said the right words and you got what you needed. Not so anymore. M, I am so sorry that your beautiful girl had a seizure that was so terrible. It brings tears to my eyes to think of it. You must have been beside yourself. She's your girl, it's terrible that you have to put with these ridiculous moneygrubbers.

  4. >Thanks Christine, We were very blessed with that seizure in that she survived it. She had to be put into a medical coma to stop it. It was the most terrifying thing ever. But we got her back. And we didn't know we would. And it has obviously many many residual effects. But we didn't know if she'd make it, or if she'd have any cognition or awareness at all if she did. ANd she does. So, we are simply thankful. But even so, I don't ever want to see another and I am an the warpath for my kid. This is simply wrong. And, Emily, I don't want to have to lie. I don't lie, ever if I can help it, if I"m aware of it. I shouldn't have to with something like this, and American health care, I really shouldn't. It's wrong.

  5. >i hate insurance companies. SAME FREAKIN' THING has happened to both my little family (denied Pete's anesthesia costs when he had to have emergency dental surgery. at age 3. sure, we can do major surgery with no problem. GAH! even the dentist herself cried). Of course we've dealt with this on several occasions with my sister too. These THIEVES hold us, and good doctors, hostage. with NO accountability. Every other freakin' business is held accountable. not them. ARRRG. this is what the dumb government needs to REFORM! DUH! Okay, that rant was just so you know I agree, and you're not alone, and I'm PRAYING that something is worked out for your sweet baby girl. love love b

  6. >That is simply and completely beyond despicable!!! We are talking about a little girl here!!! I hate and I mean H.A.T.E. health insurance companies. I have been at perpetual war with them since the day N. was born and ended up in the NICU. I know from experience they probably have some lame a**, sell out doctor (and since both our hubbies are drs. I feel just fine saying that) who, I bet you donuts to dollars, isn't even a pediatrician much less a neurologist deciding what meds are OK for Sarah to take and what risks are acceptable. Hey, our insurance company's medical review for N was once done by a dr who had trained in gynecology. I have been driven to tears by insurance companies more times then I'd like to admit trying to get all of N's services paid for. I swear it feels like I spend half my life dealing with these people. Keep up the fight Michele!! Keeping you and Sarah in my prayers.

  7. >Oh, no, that will not do. I'd be right there with you if someone wanted to take my girls off the medications that are effectively saving their lives and put them on a possibly lesser medication. Oh, no. I don't think so. Keep us updated. Praying for your beautiful girl.

  8. >Don't even get me started. And I don't even have kids yet! This kind of stuff drives me insane. It drives my father, a GP, insane. It's awful, and where is any real reform or real accountability, never mind common sense. You might even make an appointment with your congressperson for this one.


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