Wednesday, June 10, 2009

Here Today, Gone Chugani

Well, that did not take long at all.

In order to go up to Detroit and see Dr. Chugani last week, and have it covered by our insurance, we had to show that PET Scan's could not be done at Nationwide Children's Hospital here and that Dr. Chugani was a renowned expert in Infantile Spasms who should be consulted with.

The insurance company, taking these things into account, granted us an exception to go 'Out-of-Network' and permitted that the trip could be treated as if it was actually 'In-Network' as far as how it all affects our Out-of-Pocket expenses and obligations for the year, which go up by 150% if you go 'Out-of-Network'.

I didn't understand how it played out then, don't now. Some kind of a mumbo-jumbo loophole I neither understand nor care to, I was just happy to get the visit covered and get Bennett up to see the doctor there.

Got a call from the insurance company yesterday. Not sure what prompted it, I think maybe it was routine or something, the nurse case manager doing the required follow-up on Bennett's case and checking to see how it went in the Motor City. It was explained to us, very politely (she is actually a very nice woman whom I do not hold responsible, she is simply relaying policy) that going BACK to Detroit for any further testing, or surgery, would not be granted the same exception.

It would be considered an 'Out-of-Network' option.

What does that mean? Well, allow me to explain, though I have very limited knowledge about such things. Like most good husbands, I just give all my money I earn to my wife and she handles all the bills and stuff.

What it means is that our annual co-pay goes from, say...$5.00 (let me be a little vague about being specific about actual numbers here, so I am using placebo numbers), to around $14.00. We've already hit our $5.00 annual co-pay and so then we would need to come up with the other $9.00. Not a bad situation actually, when you look at it like that.

Yer thinking...DUDE...WTF? You are actually worried about spending $9.00 more a year by breaking the rule of the insurance company and going 'Out-of-Network'? Are ye DAFT, man? Don't you care about getting the best care for your son? $9.00 be damned?

Well, if it were $9.00 only, I'd find a way. It isn't like I have $9.00 sitting in my buttcheeks I can just squeeze out at will, but I could put $9.00 together if I had to, and fairly quickly, you'd be surprised. Hell, I might even say I could MAYBE come up with twice that in a hurry if I absolutely, positively, had to. Favors, selling some stuff off, I could find a way.

Here's the catch.

It isn't just that expense. Get this...the insurance company has contracts with facilities they consider to be 'In-Network'. Let's say that Approved Place #1 charges 15K for a Butt Scan. Well, if Detroit charges 23K for the same Butt Scan, then the insurance company, after we have met the new co-pay amount of the $14.00 or however much it is, can say 'Mr. Lilly, hmmm, yes, let's see now...we will only cover the 15K for what we consider to be the approved cost of a Butt Scan, so you will be responsible for the remaining 8K of this particular Butt Scan. Thank you very much, hmmm.'

And they can do that ON EVERY SINGLE ITEM ON THE BILL. From the actual brain surgery itself to the Tylenol he gets on his last day in the hospital. If they do not agree to the cost, there is no discussion, we are responsible for the remaining amount owed.

Do we have bad insurance? I don't know. I've had better, I've also had worse or none. I am grateful that we HAVE insurance. I am grateful that we do have some options.

But my feelings of gratitude and my opinion about our insurance is not relevant to this writing. What is relevant is one simple fact.

We have a decision to make about Bennett's care, and it is a difficult one. Do we go back to Detroit, and risk owing tens of thousands of dollars we do not have, or do we decide to stay in our network and have Bennett seen and treated at the Cleveland Clinic? CC has a fantastic reputation, but it does not have Dr. Chugani. That does NOT mean CC can't treat Bennett as well. No one can answer that.

But it is a heavy thing to sit and think about, a decision like this. On the one hand you want to be sure you make the right choice for Bennett short term, but I also have to protect my entire family long term.

So we have some thinking to do...we won't actually make THE decision until after we see if the Vigabatrin can help Bennett. Then we will see. I can only hope that we are able to sort through the emotion and make a SOUND, REASONED decision.

Can't ask for much more than that.

Well, I could ask myself why this particular blog is so Butt-centric? Maybe cause I feel like I have my head up my ass.

Be were NOT expecting that one, were ya?


  1. You managed to keep that light...considering the heavy topic. That's a tough decision. One I would not want to make. But, at the end of the day, you know you and Jen will do what's best for EVERYONE considered. I think Dr. Chugani is always willing to lend input when needed. I've heard great things about Cleveland Clinic, so either way, Bennett will be in good hands.
    Btw, how's vigabatrin treating him?

  2. Wow, that is a tough one. It pisses me off that things like this happen. You find the IS guru who is willing to help you with your son, and then because of where he is located, you can't get insurance coverage. But, like Holli said, Dr. Chugani has been more than willing to work with me and KC while he is being seen here at University of Chicago. Not quite the same, but at least he will be involved if you want him to. Good luck with the vigabatrin. Here's to hoping that it will be your miracle drug and you won't even have to worry about this.


  3. In a perfect world, money would not play into decisions about our kids care. But in a perfect (or at least better) world, doctors would better understand IS and how to treat it so that we as parents do not have to make extremely important decisions about how to treat our children. This whole process is fraught with decisions we as parents never expected to have to make.

    We have had to make some big ones along the way, the biggest of all to stop chemo because I, mom, felt it was making the seizures worse. But we aren't treating her for cancer at all anymore and that is scary. But the thing I learned a while back was with any big decision, make your list of pros and cons for each, discuss with significant other, make your choice, and then DO NOT look back. You make the best decision you can with the information you have and move forward. Everything about this is hard. Do not make it harder on yourself.

    That said, it sucks that insurance plays such a big role in health care decisions. And I'm sorry that it forces you to have to make tough choices. But hey, it isn't like the Cleveland Clinic is some mid-level children's hospital.....

    And hopefully Vig will work it's magic and none of this will matter. And that head up the ass picture is just disturbing (and funny).

  4. I don't know how insurance works outside of the basics of it, but you are saying that Detroit as a facility is being deemed out of network, does Dr. Chugani constitute as out of network? Also, you have some wonderful pictures to express the sentiments of the moment.

  5. I wlll share personal experience with you about catastrophic illness and insurance. You can jump a beauracratic hurdle from time to time. Brandon and Elaine will give you my number. Just ask them for it, or I would call you outright if I could. My heart is with your family. CB

  6. Sorry about that. I'm sure you feel like the element of choice is being taken away. I'd like you to have every option on the table but you don't. However, the Cleveland clinic is world renowned - you could do worse. There is usually another path when insurance says no the first time but be sure you really want it first. Is there any change at all on the Vigabatrin? Less intense clusters? Anything?

    Now about that picture - urrgh. As a writer you may want to consider that some pictures, funny and all as they are, take away from your message..... Oh OK, kudos to you for finding it.

  7. If and when surgery becomes the next step, talk to Chugani's team. They usually help with the insurance stuff. With the right letter to the right person at your health insurance, they may still cover it.

  8. Definately DID NOT see that coming!

    Thanks...made me choke on my egg sandwich. Plus lose my appetite. And with my skinny sister in law coming in two weeks...skipping an egg sandwich every now & then is a good thing...

    This particular post totally resonates with me...particularly because my stomach will be in knots until we have an approval from our insurance. Still don't. And can't until we have an actual appointment. But anyway...

    Have you applied for SSI? If you make too much...every state has a form of Medicaid that is on a financial waiver. Talk to your EI case manager...she should be able to point you in the right direction. We are on State I know a little about RI's...and even though it is safer...they can still deny coverage.

    Jonathan & I have been having MANY discussions about this. What do we do if our insurance denies us? Because Boston already told us no to surgery...we can't really go local. But one thing we've talked about is working with Detroit Children's to make payment arraingments. I'm not sure if they would accept...oh $25 a month. But I'll ask. With Trevy on my lap. Preferably seizing. And we've also talked at length about doing fundraisers. I'll forward you some emails a mom who has been through similar situations...'re gonna get advice from EVERYBODY and their brother. Some good...some bad. But this decision is between you & two need to come to a peace point. Or as close as possible. And then close your eyes...grip hands...and jump off the cliff TOGETHER.


  9. Yikes! Ken, I sincerely hope this all works out. Fortunately, the folks above me have good advice. You never know with insurance companies, though. With my wife's eye's, she's sometimes had to jump through hoops, but eventually got "referrals" enough to continue seeing the best glaucoma doctor in the area.

  10. Ditto to all the more knowledgeable people who have already commented. Sometimes I moan about oweing "$10.00" to the IRS and paying it out over the next __ years. Sometimes I gripe about the junk we have on our back porch. Ah, how blessed I am that the giant hand of "fate" doesn't come and give me something to really suffer over.
    With you as much as I can be...and more if you need.

  11. My Sweet blessingJune 11, 2009 at 7:48 PM

    Your blog is so intresting. I know how you feel. Our insurance would not pay for Madeleine's surgery with Dr. Sood & Chugani..after writing the congressman,senator and everyone else besides the president we was still denied..but managed to get there with the help of our parents to pay for the surgery. What difference does it make anyways where you go anyways... I hope it all works out for you!!

  12. I just read Trevors mom's post..Some states may do that with SSI..But I have that for Madeleine & like I said..I was still denied..but I wrote all these people a week before her durgery date ..her surgery was moved along so fast I didn't have much time..but you may be able to get something done where you live..keep pushing..We didn't try the make payments..wished we would have because the day of her surgery we handed over a cashier's check for 66,000.00. The nurses in ICU told us that it was crazy because they see kids all the time with no insurance and no money.

  13. Hi. Don't know if I've commented before, but I found your blog through Help Is Here. Have you applied for the Medicaid Waiver? I have the Waiver in Iowa, and they allowed me to see a specialist (my son has Fragile X Syndrome) out of state when his primary care physician referred us and because the doctor we saw is an Iowa Medicaid Provider, even though the hopsital she works at is not. It's worth a call to your local Human Services office. Just be specific that you want the WAIVER and not just Medicaid. The Waiver only takes the CHILD'S income and illness/disease/handicap into account when determining eligibility.

    I wish I could help. I do appreciate your honesty and style of writing. Best wishes.

  14. You Health Care System confuses the hell out of my, I know you have to pay for it monthly, and I know that most Americans don't pay that little, but when it's time to put it into actions, you always some some road bloks.

    The Portuguese Health System sure isn't perfect, and sometimes people wait years for an operation and stuff like that, but in general it's less complicated, and it certainly is less expensive.

    Ken I sent you a PM on the board.


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