The Real Healthcare Crisis, Part III: Telling Stories

[Note: This is the third part of a series our current healthcare crisis, it’s causes, and why either keeping of killing the PPACA will not solve the crisis.  You can find the earlier parts here and here.]

I bring stories, that you might shoot the messenger.

I.

I am lifting my youngest son out of his car seat when it happens.  His body stiffens, fists clenched, until he is as hard as a wooden board.  His eyelids are wide open, but the eyes themselves roll back into his head; he stares ahead with white, sightless orbs.  He is no longer breathing, and he gives no response of any kind to either my initial concerned questions or my panicky cries that follow.  He is, I believe for just a moment that goes on forever, dead.

It is not his first seizure.  It’s just the first I witness.

His diagnosis is vague-sounding: seizure disorder.  One saving grace is that his seizures are infrequent and short.  Also, thanks to my wife’s influence, there is no question he has the best treatment available.  The Sunday before we meet with the neurologist who will see him regularly for years, the newspaper does a story on that neurologist’s genius.  That story centers on another boy whose seizures are constant and life-threatening, and describes removing a small part of that boy’s brain.  (“The size of an olive” is how the journalist describes the smattering of grey matter; I can still see that phrase on the newsprint when I close my eyes.)  That story ends like a Hollywood movie.  At the time of publication, the boy has had no more seizures, and no reductions in memory or cognitive ability have been detected.

The prognosis my son’s neurologist offers is hopeful.  Such cases are not uncommon in young children, we are told.  More often that not, they grow out of them.  The trick is to not have so many seizures that our son’s young, developing brain “learns” that seizures are simply what a brain is supposed to do.  In order to “train” our son’s brain, we are given a prescription for a drug that will lessen the chances of seizure.  As he grows older, we will taper him off the drug and see if his brain built itself correctly.

There are some bumps along the way, of course.  The first drug we try is a bad fit, and the dosage prescribed has adverse effects.  “I see two,” our toddler-aged son says one day matter-of-factly.  We have no idea what he means until he runs his new bicycle directly into a parked car, and then we deal with the guilt of not being able to have guessed how a very young child might describe having blurred, double vision.  And there is still another seizure or two down the road even after we have switched to a more effective drug and dosage.  Eventually, however, the seizures stop.  Years go by, and we begin to taper him off his medication slowly until we eliminate it altogether.  He has not had a seizure since.

The neurologist and the drugs he prescribed have cured our son.

II.

A decade ago, my best friend was diagnosed with multiple sclerosis.

A decade prior to that she had experienced some temporary numbness in her feet, and at the time this had been ascribed to a pinched nerve in her neck.  With the new MS diagnosis, of course, that old problem was looked at with a fresh eye.

As we all learned, MS affects different people differently, and the disease is usually treated with one of a variety of drugs in the hopes of staving off long-term adverse effects.  For the most part, the disease manifested in relatively benign ways with my friend: a numbness in her feet that would occasionally flare up, some loss of balance, a need for more sleep.  The manifestations could sometimes, however, be scary.  At one point, her vision began to fail, which we were told was a common side effect of MS that was almost always temporary.  The word “almost” was, of course, extremely disquieting, although her sight did return to normal within a few weeks.

The difficulty, once it was determined that treatment was needed, was figuring out exactly which treatment to pursue.  Some of the more innocuous drugs available are processed through the liver, but there is a certain segment of the population whose livers don’t do well with those drugs. My best friend is one of them.  Other drugs require daily injections in different parts of your body, including — this is true — your lower abdomen.  As unpleasant a thought as it might be to give yourself a shot in your own stomach, it was quickly rendered moot; she ended up being allergic to those kinds of drugs.

Finally, her doctor recommended a kind of experimental treatment that was seeing good anecdotal results.  The drug, interestingly, had actually been developed to help organ transplant patients’ immune systems accept their new organs.  In this it was apparently unsuccessful, but it seemed to work well with MS patients.  Better still, this treatment was administered once a month rather than daily.  It worked like a dream, and her symptoms largely disappeared.

The problem was that the drug was phenomenally expensive, and because it was experimental health insurers had never approved it as a valid MS treatment.  Fortunately, however, a bit of good luck finally showed itself.  My best friend, you see, works on the faculty of a large medical university, and that university’s health plan is entirely self-insured.  It took a lot of string pulling, but eventually the third-party administrator agreed to accept claims for the treatment at the university’s request  — for that policy year.  For years afterward, every open enrollment was followed by a period of stress as the third-party administrator would yet again announce the treatment was uncovered, strings were pulled, arguments were made, and eventually –usually two or three months into the policy year — the claims would once again be temporarily accepted.  It was an imperfect system, but it worked… until the company that manufactured the treatment drug ceased manufacturing it.

Thankfully, fortune struck twice.  As soon as the treatment she had been receiving dried up, a new once-a-month treatment appeared on the market place that has produced similarly positive results for my friend.  Better still, health insurers approve this treatment.

Thanks to the miracle of modern medicine, my best friend has been able to live with a potentially debilitating disease relatively unscathed.

III.

My mother is dying of cancer.

She had spent the better part of a year receiving treatment for ovarian cancer, and for a while we had thought she might have beat it.  But continued exhaustion led to additional tests, and we now know her rebellious cells have metastasized throughout her body, including her brain.  She’s forgetting things rapidly now. She’s terrified she’ll lose the important parts of her before she goes.  We don’t know it yet, but her fears will eventually turn out to be well-founded.  The last times she talks with my sister, she won’t be able to recall that she has a daughter.

I take her to see her primary-care physician for what will be the last time, because she’s lost use of her right arm.  He’s known my mother for decades, and so it is not without some sadness that he lets us know that there’s really nothing to be done at this point.  The end is coming, and will be here within a few weeks.

Although…

He did recently meet a local specialist who has recently purchased a new kind of radiation machine that specifically targets cancer in the brain. One of only two such machines in the entire country, it’s very cutting edge stuff.  My mother’s doctor offers to write out a referral, but he does warn us that it’s likely a waste of time.

The brain doctor, of course, says otherwise.

“I’m telling you right now, I think my treatment will have a huge impact,” he confidently tells my mother later that same day.  “Most likely, with daily treatments we’re talking total remission.  But even if we end up being unlucky, we’re still looking at healing your brain enough so that you can live for a much longer time with your memory and use of your arm restored.  I think you’ll see results in the next few days”

Two weeks later, my mother asks me to talk to the brain doctor.  She isn’t getting better at all.  Her memory continues to slip; her useless arm still hangs limply at her side.  I try, but he won’t take my calls.  When I take her into her daily brain machine treatment the next day, I ask the receptionist if I can speak with him and am rebuffed. When my mom is taken in for her treatment, I slip though the waiting room door and wander the clinic halls until I find him.  He is visibly annoyed that I am there, and when I explain why I am he rolls his eyes.

“Of course she’s not getting better,” he says to me with disdain.  “She had late stage cancer in her brain.  What the hell did you think was going to happen?”  Later, when she asks me if I was able to talk to the brain doctor, I lie and tell my mother I was not.

A week later, my mother dies in hospice.  Shortly afterward, as I’m dealing with her estate, I review her health insurance documents.  The daily brain machine treatment cost my mother’s Medicare supplement company over $10,000 a pop which, when you think about it, makes sense.

Such a rare and revolutionary piece of medical technology costs a clinic millions of dollars, and you have to pay for it somehow.

___________________

When we talk about our health care, we do so by telling stories.  We do it so universally, in fact, that we have a tendency to forget that we do so at all.

Most of the time when you get healthcare, the diagnosis and treatment are as clear-cut as math itself.  Sounds are muffled in one ear, your doctor sees it is full of wax, drains the wax with a saline solution, and your hearing returns to normal.  Your arm hurts the day after you play football with your friends, an x-ray shows a minor stress fracture in your forearm’s radius, and after a short time in a cast you’re as good as new.  There’s an additional commonality in these everyday ailments: they’re pretty cheap to treat.

When we begin to get into the more expensive maladies, however, much of what we tell ourselves are clear-cut facts are actually stories we like to tell ourselves. This is important when we begin to consider how to fund a viable healthcare system, because no stable system can pay for everything.  This is the case regardless of what kind of system you use: private markets, government-run, or a hybrid like Obamacare.  If we’re going to fix our own system, we will ultimately need to make decisions about which of the expensive treatments are worth the money; we will need to do this regardless of whether it’s the government/voters or insurers/consumers who decide.

The problem is that once you start to strip down the stories we tell ourselves to get to the core of what we know, you find how little we actually do know.

The story I tell myself about my son, for example, is a great story. But the fact is that no one really knows how accurate it is.  It’s entirely possible (and maybe even likely) that, had we done nothing, my son would have still outgrown his seizure disorder, the way that so many kids throughout history have done. At the end of the day, no one can say whether or not the astounding amount of money that was spent on very expensive drugs, brain EEGs, annual MRIs, and the not-at-all-cheap time of one of the country’s leading brain experts actually did anything at all.  And that “no one” includes that leading brain expert, who was always honest and frank with us regarding how shockingly little anyone knows about such things.  The most certain thing we can say about all of my son’s treatment is this: His data might eventually be added to other children’s data in such a way that will probably lead to a better understanding of seizures somewhere down the road.

The case of my best friend and her MS is really no different.  We tell ourselves that she’s relatively asymptomatic because of her treatment, but in truth this is more a statement of faith than fact.  After all, it’s possible she had MS a decade before her initial diagnosis, and that she’s someone whose bad symptom flare-ups occur decades apart from one another.  In fact, there were actually long periods in between her various prescribed drugs where she received no treatments at all.  Maybe her treatments have helped keep the ravages of MS at bay.  Maybe it’s a ridiculously astronomical amount of money being spent for little or no benefit.  Who knows?

My mother’s brain doctor was — and I cannot stress this enough — a borderline evil ass**le.  That aside, however, it’s worth asking: what is the difference, really, between an insurance company agreeing to pay for my mother’s brain radiation treatment, and an insurer agreeing to pay for seizure or MS treatment?

Before you answer, consider cancer treatment.  Radiation, chemotherapy and surgery are as invasive and expensive a group of procedures as one might imagine.  We agree to both undergo and subsidize them because we know that they prolong lives.  Except, however, that they might not, at least not to the degree that we tell ourselves in our stories.

In 2000, the Journal of the American Medical Association published a study that took a critical look at the survivor rates of cancer patients.  The primary method used to judge efficacy of cancer patients is the five-year survival rate; that is, the percentage of those who have survived that cancer five years after the patient’s initial diagnosis.  By that standard, modern treatment results have been exemplary.  The problem is that these results stem from the fact that we are able to diagnose cancer much earlier than in decades past.  What does that mean in terms of how much longer cancer victims really do live with modern invasive procedures?  How much longer do cancer patients actually live now than they did a generation ago? It depends on the type of cancer, of course, but for the most part the answer is we aren’t really sure.

Or, more to the point, the effectiveness of cancer treatment — and most other large ticket items we’ll eventually have to make decisions about over the next decade, regardless of what happens with Obamacare — largely depends upon what stories we tell ourselves.

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