Who's On First!

Steven teeing off today at Mission Bay

As if the stress of having a child with brain cancer and other medical problems isn't enough, there's always medical insurance to deal with.

Our insurance company is CIGNA. We have a PPO, it's the best and most expensive plan offered by Doug's company. Our portion of our annual insurance premium is in the thousands of dollars.

I will forever be grateful for St. Jude for removing that particular piece of stress from our lives, since it was mostly them who dealt with CIGNA, and they paid everything that CIGNA didn't cover.

CIGNA approved Steven's treatment protocol in advance.

Mind you, that didn't stop them from calling me at the most incredibly inconvenient times, to tell me two days into one of Steven's stem cell transplants that he didn't have proper authorization to be in the hospital.

Never mind that he's midway through a stem cell transplant that CIGNA approved, but hey, we'll just pull him out of the hospital while CIGNA takes 48 hours to do a hospital preauthorization. And maybe someone can educate the geniuses at CIGNA that you can't do a stem cell transplant at home.

Today's tale is about very, very expensive shoes. $510 shoes. Plus tax.

Steven's arm and leg are longer on the right than the left, the discrepancy is increasing over time. Right now there is about a two-inch difference.

When Steven stands in bare feet, the right side of his pelvis is about 2 inches higher than the left. His spine curves back in the opposite direction, toward the right, so that his shoulders will remain horizontal. If he stays in this position long enough, the resultant scoliosis will be severe enough to require surgery.

We have been putting a lift in Steven's left shoe since he was in kindergarten to help correct at least part of this discrepancy. Currently he requires a 1 1/2 inch lift.

The price of our local cobbler putting in a lift has increased over the last 6 years, our most recent lifts costing around $65.

We buy Steven good quality shoes in the largest size he can tolerate, hoping that the shoes will last him a year. They usually do.

The shoes

Steven outgrew his last pair of shoes in May. When we went shopping, we found that he is now officially an adult sizes. We also found that comparable men's shoes are twice as expensive as for boys.

Finding shoes for Steven is a challenge, the lift means he can't have shoes with the lights in the sole, no Heelies, no fancy molded soles, no Nike Air, no tennies with those clear gel heels. He is always excited at the thought of new shoes and is always discouraged when nothing he likes is acceptable.

But Steven's life has been full of disappointments and he doesn't dwell on them for long.

This time Steven's heart was set on these shoes for $100. We've never spent that much on shoes for him, and I was worried that they didn't have enough sole on them to split.

He was insistent, and I don't really have the heart to say no, so I bought them and we took them to our cobbler. He said they were very difficult to split and it would cost $150, bringing the total cost of the shoes to $250. This was beyond my threshold for a pair of shoes.

I started to tell Steven the bad news, which he accepted. I could see tears in his eyes, and it dawned on me that the lift might be a covered medical expense under our expensive insurance.

So I called CIGNA and asked. They asked me many detailed questions and the upshot was that his shoe could be considered an external prosthetic device, and that our plan covers external prosthetic devices (EPD's) at 90%.

Certain steps were required of me to get this coverage. I had to go see Steven's in-network orthopedist ($40 copay) and get a prescription. I had to take the prescription to a special orthotics and prosthetics company to make the lift, and they would bill the insurance.

The orthotic device company called CIGNA independently to verify coverage. They gave them the exact billing code they would use. CIGNA reviewed our coverage and verified that EPD's were covered at 90%.

We sent the shoes out to get the lift. It turned out I was right after all, the soles on those shoes did not lend themselves to having a lift put in, so we returned them and Steven found another pair he liked, this pair was $110.

Two months after we began the process of buying new shoes for Steven, the lift was installed in the second pair of shoes and everybody was happy. Until today.

This was in today's mail:

1. Benefits are not payable except for those listed in the schedule of benefits (please refer to your plan booklet)

I checked the booklet. It says that our plan covers EPD's at 90%. So I called, and CIGNA noted that we'd been told it was a covered expense. They said they'd check into it and call me back.

When she called back, it went like this:

She:	I spoke to the manager, and the explanation of benefits is correct, the claim is being denied.	Costello:	Well you know I've never met the guys. So you'll have to tell me their names, and then I'll know who's playing on the team.
Me:	Why was the claim denied?	Abbott:	Well, let's see, we have on the bags, Who's on first, What's on second, I Don't Know is on third...
She:	That is not a covered benefit under your plan.	Costello:	That's what I want to find out.
Me:	Why was I told in advance of arranging for the lift that it would be covered?	Abbott:	I say Who's on first, What's on second, I Don't Know's on third.
She:	I don't know why those people told you it was covered. We have reviewed it and it is not a covered benefit. Since you were told it would be covered, you have the right to appeal the decision.	Costello:	Don't you know the fellow's names?
Me:	My plan states that external prosthetic devices are covered at 90%. Do you consider the lift in my son's shoe to be an EPD?	Abbott:	Well, I should.
She:	I can't tell you that.	Costello:	Well then, who's on first?
Me:	Who can tell me?	Abbott:	Yes.
She:	You can find that in your plan booklet.	Costello:	I mean the fellow's name.
Me:	My booklet doesn't tell me what you consider to be an EPD. Where can I find out what your definition of an EPD is, or more specifically, whether the lift in my son's shoe is considered an EPD?	Abbott:	Who.
She:	I can't tell you that. There is no way we can draft a definition that will cover all devices that are submitted to us.	Costello:	The guy on first.
Me:	I just want to know about my son's device.	Abbott:	Who.
She:	I don't know.	Abbott:	The first baseman.
Me:	Well, somebody knows what my benefits are. Can you direct me to a more complete description of my benefits?	Abbott:	Who.
She:	All the information we have about our plans is on our website.	Costello:	The guy playing...
Me:	I'm connected to your website right now. Where do I look for this information?	Abbott:	Who is on first!
She:	Look under your Plan benefits.	Costello:	I'm asking you who's on first.
Me:	I'm looking right now. I found a table that says that EPD's are covered at 90%.	Abbott:	That's the man's name.
She:	It is not a covered benefit.	Costello:	That's who's name?
Me:	Is it because you don't consider the lift to be an EPD? Where can I see a definition of what you consider an EPD? Somebody at CIGNA knows what an EPD is, how can I speak to someone who can answer my question?	Abbott:	Yes.
She:	All the information we have is on the website. There is nothing more we can give you.	Costello:	Well, go ahead and tell me.
Me:	I'm on the website, please tell me where to find the definition of an EPD.	Abbott:	That's it.
She:	That information is only available to CIGNA employees.	Costello:	That's who?
Me:	Let me get this straight. I pay for insurance from you, but the policy information you've provided me with doesn't tell me exactly what is and isn't covered. The booklet tells me to call if I have questions. I called, you advised me, now you're telling me I was incorrectly advised, but nobody can tell me why.	Abbott:	Yes...
She:	You have the right to appeal the decision this one time. Next time it would be a good idea to get a predetermination of benefits.	Costello:	Look, you gotta first baseman?
Me:	How long does that take? If I get a predetermination, will they give me a reason why my claim was denied?	Abbott:	Certainly.
She:	A predetermination takes 45 days. It will tell you whether or not a particular service is a covered benefit or not.	Costello:	Who's playing first?
Me:	How can I get a printed definition of the terms used in my benefits booklet?	Abbott:	That's right.
She:	You can contact your employer, or you can look on the website.	Costello:	When you pay off the first baseman every month, who gets the money?
Me:	Does my husband's employer have any information that isn't on the website?	Abbott:	Every dollar of it.
She:	No, all the plan information is on the website.	Costello:	All I'm trying to find out is the fellow's name on first base.
Me:	I want to speak with someone who can tell me if my plan covers my son's limb length discrepancy.	Abbott:	Who.
She:	There is not a manager available right now. A manager will be in the office tomorrow, I can call you back.	Costello:	Who gets the money...
Me:	OK. I give up. I surrender. The only reason I went somewhere that charges $400 to put a lift in my son's shoe is because you told me that's what I needed to do. I followed your rules. I did everything you told me to. Now you're telling me that my only recourse if I want you to honor your word is to file an appeal.	Abbott:	He does, every dollar of it. Sometimes his wife comes down and collects it.
She:	Yes.	Costello:	Who's wife?
Me:	And if you decide to cover this expense, it won't be covered in the future.	Abbott:	Yes.
She:	It is not a covered expense.	Abbott:	What's wrong with that?
Me:	And you won't tell me why it isn't covered?	Costello:	I wanna know is when you sign up the first baseman, how does he sign his name?
She:	You can refer to your plan booklet or the CIGNA website.	Abbott:	Who.

I know it doesn't do any good, but I admit to raising my voice on the phone. OK, so I screamed a little, it could be heard a block away. When I got off the phone, I was in tears. I can't even begin to imagine how I am going to be able to speak to them about this again.

When you add in the cost of the therapist I'm going to need before this is over, these are going to be the world's most expensive shoes.

God grant me patience.

- Kathleen

p.s. Steven's MRI is two weeks from today.