Monday, December 28, 2009

The Anthem who stole Christmas

A week before Christmas we learned that our out of pocket (OOP) was to jump from 5K in '09 to 10K in '10 (how convenient of the insurance company to coordinate deductible with the year). The premium, increased something like $1 per pay period, which puts us squarely at $800/month for a total of $19,600 OOP for the upcoming year.

Health insurance is a major problem in this country. And I am thankful that it has been front and center of the national debate and media for the better part of a year now. But we still have a ways to go, and perhaps the for first time ever, I envy those living in Europe and Canada. Mothers who have heart kids of their own, who encounter virtually none of the financial fall-out that we are going through. Mothers and Fathers who undoubtedly are less-stressed and who are not bogged down with fights with their insurance companies. And as far as I can tell, their kids receive the same treatments and fare just as well as their American friends living with the same anatomical deformities.

The American Dream dissolves into the American Nightmare.

Every parent's wish is to have healthy children. Through the advances of medical technology, I feel we have that with Luna. It's the insurance costs that is killing us.

Take this scenario (a totally fictional account created for the sake of this argument):

Suppose you were working at a company with roughly 100 people. The company is about 50/50 split between men and women, and about 65% of the company's employees carry insurance for their entire family.

Of that 65% one woman had a baby via c-section, one family learned their teenage daughter had a rare bone cancer, and one family has a baby who, in one year alone endured 2 open heart surgeries, 2 catheters, and 2 sedated echo cardiograms.

This December the HR gal begins her dreaded and laborious task of re-upping her health insurance contracts. Of the five companies she calls for rates, the only one who will return her call is the same carrier she is dealing with now. Sure, they say, we'll insure your company. But for 2009 we where upside down 130% so we're going to double your employees out of pocket for 2010.

Now, would anyone like to tell me how this story will end, when in 2010 we *know* the heart baby will incur another 1/4 of a million in claims for her next open heart surgery, cath and sedated echo?

The entire company not insurable? Nonsense you say! But isn't what these free-market zealots wail about? "Let the markets correct themselves, let competition rein!".

Ah-huh. Except for that tiny detail that everyone seemed to forget: you cannot negotiate your health. And you cannot leverage a human life.

I love business and am currently growing one devoted to cultivating and advocating for the creative industries. I love, love, love the thrill of the negotiation. Negotiation is all about leverage. And faking to the party trying to sell their goods or services that you somehow do not need their goods. Case in point, I recently negotiated ad space. I really did not *need* this full page ad, I wanted it. The 'seller' knew this, both parties know the publishing world is hurting, so I get a great deal for my client.

Or, you want to buy that house, but there's something about it that just doesn't feel right to you. You walk away. In this market you'll find five others-better than the one you just toured. But when you know your kid is going to cost a fortune, and you know that in 2010 she'll endure more medical care than most do in a lifetime; how can you possibly walk away and find an insurance company who will cover that? A company, whose business practices and profit margin are not based upon the services they offer, but rather, on the ones they reject (wow, sounds like a pretty incredible can I run one of those you say!)

So, until we somehow come to grips with the fact that health is not a 'free-market' kind of thing, and every time a health insurance company makes a windfall profit, and your stock spits out another dividend, just remember, that happened solely on the fact that the only way for an insurance company to make that windfall profit is to reject coverage for kids like Luna or, simply not insure entire companies who have one or two medically needy folks on the policy. Oh you say, but isn't that like everyone? Uh-huh.

Tuesday, December 8, 2009

Luna's bi-annual cardiologist check-up.

Miss Luna, 20 months old.

This past Friday I took the girls to Luna's cardiologist appointment. At this stage in her young life, she sees the card every 6 months; and most likely, once she gets older, and has her surgeries behind her, she'll see a cardiologist once a year.

She was weighed, measured and sat checked.

On all fronts, she is doing fantastic. She's now just at the 40th percentile in weight, tipping the scales just past 24 lbs. For height she's 30 inches and her sats are at a nice 85 percent.

I wish I had thought to bring my camera, I think she may have been one of the cutest echo patients (biased, I know:)

Now that she's a big, talking 20 month old; it's easier in that she can communicate her needs to us.

A sampling of the dialog went like this:

Cindy the echo technician:

"Does this hurt?"




"How about this?"


"Nope, it tickles".

This type of repartee went back and forth for some time.

To give you and idea of how long these appointments take, we; Sienna, Luna and I watched the entire movie Aladdin, and then one full episode of Max & Ruby.

The results of the echo were very positive: the LPA (left pulmonary artery), the one that she needed the balloon catheter for, sustained it's 'puff' and is looking great (thus provides nice blood flow into her heart).

Her heart function is good.

And this was a bit of interesting information: we learned her aorta, since she has grown, has more room to 'breathe'. Some background on Luna's aorta: back when we were first diagnosed, we learned that she has a big aorta (never judge someone by the size of their aorta...sorry, really bad heart humor). Well, apparently it was SO big that her little body was squeezing in on it, which in turn could affect her heart function. Now that Luna is bigger, her aorta has more room, which may also contribute to one of the reasons that we're not seeing her sats falling at this point (which normally, due to growth and increased movement in heart kids, you will see sats fall in the year or so between the Glen and the Fontan surgery).

The only big upset of the appointment is that we learned Luna's surgeon took a job at Columbia. We *could* go down to NYC for her Fontan (ha, ha, ha), but we've decided that there are other top surgeons at Children's Hospital Boston who could do the job.

With the Big Appointment behind us, we can now exhale and enjoy the holidays. Luna's next scheduled appearance with the cardiologist will be in April. It will be then that her team decides when she goes in for her third and final repair, the Fontan.