Batkid and Stephanie Sautter: A Tale of Two Different Pre-Existing Conditions

Batkid is in the news. Big time.

Miles Scott, aka Batkid, is a 5-year-old Northern Californian with leukemia. Last week, via the goodworks of the Make-a-Wish Foundation and apparently very much to his surprise, Miles got to live out his most heart-felt dream of being Batman, and then, once be-caped, to foil crime, to put the Joker and the Riddler in the hoosgow, etc.

The media lapped it up, and so did we all, for obvious reasons:

milesbatkid2 (2)


Information about Miles’s health and medical care over the years is sparse. Pretty much all we know from the news accounts I’ve been able to find is that Miles was diagnosed with leukemia when he was 18 months old, that he is now 5 and in remission, and that he just finished a course of treatment for his disease.

We can guess, though, that Miles and his family were part of a group health insurance plan, which would mean that, as a result of one or both of his parents being employed by a company that provides medical insurance to some or all of its employees, Miles would have had insurance to cover his medical problems.

That guess seems about right because, in the past, present and future — but only until the ball drops at the end of 12/31/2013 and Obamacare simultaneously fully blossoms — Miles, had he not been covered by a group medical insurance plan, might well have not lived to see his recent crime-fighting victories.

And I mean that quite literally: his life might well have ended years ago.

*  *  *

There are lots of ways to slice and dice the medical insurance marketplace. One great way to do the divvy is to put employer-provided insurance policies on one side and all other policies on the other. The former is often called the “group” market and the latter is often called the “individual” market.

Those two markets are about as different from one another as night is from day.

In the group market, you become part of your employer’s medical insurance coverage when you’re hired, and, from your vantage point, becoming insured pretty much happens automatically, in the background (though you might have to choose which kind of coverage to have). No questions are asked of you; your current health is no one’s concern. You just get put onto your employer’s medical insurance plan just like you get put onto other group benefits the employer provides. Piece of cake. And then if you ever become seriously ill while you’re still employed with that employer and your employer has continued providing the benefit, then that insurance will be there for you. So your insurance coverage will be the least of your concerns.

By contrast, when you’re in the individual market, you have to apply for and then be accepted into the insurance coverage. And oh what an application it is! It asks about your medical situation, about the health of everyone in your family, about your weight and habits and prescriptions, etc., etc., etc. — all so that the InsCo. can get a good idea of how likely it is that you will actually use your insurance a lot. And if the answer is that, Why, yes, you’re apt to use the insurance a lot, then the insurance company is likely to not provide insurance to you. Period. As in go away.

And then even if the InsCo. accepts you and ends up providing insurance to you, you might find that, if one day you should find yourself really, really needing that insurance to kick into high gear for you (because, say, you just got diagnosed with cancer), you might also find that the InsCo. really, really does not want to kick into high gear for you, and, in fact, might prefer to spend a lot of time and energy looking for ways to get out of its relationship with you entirely, because, you know, you’re sick. So at the same time you are fighting for your life, you might also be fighting with your insurance company. It happens. This is not some urban legend.

So all things being equal, being part of the group market is a much better place than being in the individual market. And for people who are sick, it’s a much, Much, MUCH better place to be.

It is this dichotomy between the group and individual markets that led me to guess that Batkid’s insurance came to him via the group market, i.e., since Batkid has been quite sick for quite some time, and since he appears to have been getting excellent medical care, I think it’s a decent guess — and that’s all it is, just a guess — that from early on he has been happily and fortunately ensconced within a group medical insurance plan. That kind of plan is a Gosh-send for him, just as it is for the vast majority of people in the U.S. who have medical insurance and who get quite sick.

*  *  *

Stephanie Sautter’s story is different from Batkid’s story.

Some years ago Stephanie was diagnosed with inflammatory breast cancer, or IBC. She, like many people in this beloved country of ours (47 MILLION!), did not have insurance (47 MILLION!). She did not have it through a group plan, and she did not have it through the individual market either. She simply, as they call it, went bare, which is insurance-ese for being un-insured, apparently because she could not afford it (yes, that was not a typo: 47 MILLION people in the U.S. do not have medical insurance).

Because Stephanie didn’t make much money, she was able to apply for and then receive Medicaid coverage (coverage which is known as Medi-Cal in California, Stephanie’s home state).

Medicaid provides medical coverage for people who cannot afford it on their own. Under Obamacare, far more people are entitled to receive Medicaid then has been the case; this is what’s meant when you hear talk of the “Medicaid expansion.” When the Supreme Court upheld Obamacare as being constitutional, though, it put one major asterisk on its opinion, by ruling that each state could decide for itself whether to accept Medicaid expansion, which would require the state to, among other things, accept federal money to help defray 100%, and in later years 90%, of the the costs the state incurred as a result of the expansion of the number of its residents covered by Medicaid.

That asterisk has resulted in quite the political football right now, because, with some notable exceptions, states with Republican-dominated state legislatures and/or governorships have decided to opt out of the expansion and all Democratic-dominated state legislatures and governorships have decided to opt in. That split among the states on whether to pursue Medicaid expansion and accept Medicaid expansion dollars from the federal government means that we in the U.S. are about to undertake a massive state-by-state experiment of how well Medicaid works (at least the expansion of it . . . ). It’s not often that we get a fairly pristine controlled experiment on the efficacy of a government program. Yes, there will be plenty of wriggle room for all involved to explain away results they don’t like, but, yes also, we are about to get a doozy of an experiment off the ground.

*  *  *

Here is a picture of Stephanie, with her hand-written explanation of her situation, all of which made the rounds of the progressive blogosphere when the Occupy Wall Street movement was in high gear. Please do read her explanation (depending on the device you are using, single- or double-clicking on the image, or two-finger-stretching it, will usually let you see a larger version of the image).


Stephanie Sautter

The Occupy movement was about all sorts of things, but most of them tied back, one way or another, to income inequality. With that picture, Stephanie became the Occupy poster child . . . er . . . adult, for the way in which income inequality plays out in the healthcare arena, which is to say: in terms of life and death.

September 17, 2011, marked the beginning, in Zuccotti Park, of the Occupy movement, so, judging from the hand-written message Stephanie holds up in the image above, we can piece together that she first learned of her cancer sometime in 2010.

Yesterday, three-some-odd years later, on November 18, 2013, Stephanie Sautter died.

Here are pictures of Stephanie in healthier times:
Stephanie Sautter with dogStepanie Sautter southwest


*  *  *

Have you ever noticed that some cancers (e.g., pancreatic, breast and lung cancers) seem to come in two forms: the very bad form, and the really truly awful deadly form? With the former you are in for the fight of your life and you have some chances of winning that fight, but with the latter you are dying, no two ways about it, and all that’s left to do is to decide, to a greater or lesser extent depending on your particular situation, the manner in which you would like to die.

From what I read today, Stephanie’s disease was going to kill her regardless of the care she received. I say this because, as best I can tell (take this with a grain of salt because I am not a doctor and I don’t even play one on TV . . . ), IBC is one of the really truly awful deadly forms of breast cancer. It has only two stages, Stage 3 and Stage 4, and Stage 3 has a median survival rate of 57 months while Stage 4 has a median survival rate of 21 months.

It’s possible, then, that during the delay in Stephanie getting her Medi-Cal turned on and then receiving treatment, she went from Stage 3 to Stage 4, and, with that ticking up of the diagnostic stage, Stephanie’s life expectancy ticked down by perhaps as much as three years.

And you have to ask yourself: just how did we devise this system that slices and dices medical insurance into the group market and the individual market, with the differences between the two being so stark, and why on earth is our system so employer-centric?

* * *

Obamacare is leaving most of that system in place. Medical insurance for the vast majority of us will still be employer-centric, and our medical care will still be mediated through private insurance companies. The group market is little changed.

Instead, where Obamacare is having its biggest impact is in the individual market — the one where the insurance is de-bundled from employent. The big change here is that a person’s ability to get health insurance will have nothing to do with his or her health proclivities, let alone his or her actual, real-life health issues (which in this context we call “pre-existing conditions”). And for those who cannot afford the insurance, the government will help pick up the tab and might even pay for the whole kit ‘n kaboodle. And then there’s also the Medicaid expansion mentioned above.

And that means that Stephanie’s experience with her dread disease could have been more like what I’m guessing Batkid’s has been like. She could have gotten the care she needed, when she needed it, and her employment status and her financial wherewithal would have played little or no role in the basics of how she received care.

To be clear, it’s likely that Stephanie, very much a human being, suffered from some of the failings of human beings. It’s quite possible that she could have been on Medicaid before she got sick, which might have meant that she would have gotten diagnosed earlier and therefore had a better prognosis. However, as a financial planner and at least part-time human being, I can assure you that, when we design systems that are intimidating and scary and imbued with at least a bit of shaming (e.g. Medicaid), and combine that with requiring human beings to actively pursue becoming a member of the system by jumping through some bureaucratic hoops, then a lot of people will simply stay away. Payroll withholding, for example, really works, as do auto-enroll 401k plans and auto-deposit savings plans . . .

*  *  *

For anyone who says they like the pre-Obamacare version of our Medical Services Industrial Complex (or MSIC for short), ask yourself this: what would you have felt if you or someone you loved had found yourself in Stephanie’s shoes? What would you have done?

And what if the Batkid/Stephanie roles had been reversed? What then? What if the everyday Jill or Jack person had been the one with the insurance coverage and the adorable Batman-loving 5-year-old’s parents had been the ones without insurance, so that Batkid took it on the chin (kapow!) and went without care, while the everyday Jack or Jill got totally topnotch care?

One last thing: I truly hope, and mostly expect, that years from now someone reading this piece will (a) be aghast at what we all called a medical insurance system in the pre-Obamacare years, and (b) wonder how so cruel a system — a so very random, arbitrary and capricious a system — could have come to be, and how so many could have fought to keep it in place.

They’ll wonder . . . Was it all one big practical, if extremely nasty, joke . . . ?


Leave a Comment