Culture and Society

Nothing… in the Name of Liberty

Tomorrow would by my mother’s 70th Birthday. She’s been gone for ten years but I remember when the end began as if it were yesterday. I was far away, leading my team in some crappy corner of the globe talking to her on a satellite phone. It was cancer. They’d caught it early and were able to operate and contain it. She dodged a bullet. Cancer alone, wouldn’t do it.

Shortly after I returned from that deployment I remember noticing her speech slowing considerably more each time I would call. The doctors thought it may have been related to the cancer medications she was taking. It wasn’t. It was ALS. ALS, as it does in every person who ever suffers from it, killed her. It killed her in a slow, methodical painful horrible way.

This isn’t a story about losing a parent. We all expect to lose them at some time. I was fortunate enough to have both of mine well into adulthood, after I crossed the bridge of financial stability-after I started a family of my own. This isn’t a story about ALS either.   It’s a horrible disease. But it’s very rare. It touches less than one tenth of one tenth of one percent of Americans annually. Chances are, it won’t matter to you. This is a story of what happens in 21st century America when someone you are obligated to care for, gets sick.

My mother lived less than two years after she was diagnosed with ALS. For most of the second year, she was reduced to a completely motionless state as her nervous system rapidly shut down. There are a few things I will remember for the rest of my life that happened during that time. I’ll remember the long drive she asked me to take her on shortly before her speech completely failed. She slowly told me the story of how she met my father and how happy they were, for a brief time, when they were married. They split when I was too young to remember any of it. We’d never talked about it. She wanted me to know that I came from something good. It was the type of thing you tell your son when you know its the last thing you’ll tell him.

I remember the trip to the specialist’s office in Philadelphia. When the doctor told her that her lungs were soon going to lose the ability to draw air. And when he asked her if she wanted a respirator, because without it, she would be dead in months. She looked at me for permission to say no. Then she pointed to my wife’s stomach. We were pregnant.  She wanted to live to see him. But the pain was too much. With a silent hug, I let her know it was ok. I understood. She was done.

I remember the afternoon, a few months later, alone in the house I grew up in with her. I dozed off in the comfortable yellow fabric chair I spent my childhood watching TV in.  Something startled me. I realize now it was the gasp of her last breath that woke me up.  She was gone. The last thing I remember was the feeling of relief.

Surely you can forgive yourself for feeling relief when someone comes to the end of such a hard, painful journey. It’s only natural. But there’s a part of that relief that I haven’t been able to shake. One that wasn’t linked to the pain and suffering of my mother. One that wasn’t linked to the emotional marathon that is a long terminal illness. One I will feel guilty about for the rest of my life; the relief that my mother’s passing had given me from the ever growing certainty that we were all going broke caring for her.

My mother did everything right. She graduated from college and became a teacher. She spent 35 years teaching kids how to read in some of the lowest income school districts in South Jersey. She saved her money and put her kids through college. She even bought a long term disability insurance policy. But when she fell ill after she retired, and before she was eligible for social security, the financial burden was unavoidable.

ALS patients live an average of three to five years after diagnosis. She lived two. Had she lived longer, my family, including myself, also providing for a family of my own, would have gone bankrupt caring for her. Ten years later, I still bear financial burdens that I had to assume in order to relocate my family to provide care for her. Because we, in America,  do something with medical care that we don’t do with anything else this important. We let profit drive the outcomes.

The single most common reason for bankruptcy in America is medical cost. Whether it be injury, illness or terminal diagnosis, nothing drives us into financial failure like medical issues. More than one in four bankruptcies in America are caused by medical reasons. And that’s just for people who have issues. The happy path is no better.

The average cost of healthcare in America for a family of four is just over $25k annually.  Employers pay about 60% of that. Employees, you and me that is, pay the other 40%.  Which means that a family of four, in a good year, pays $10k out of pocket annually to provide basic health care. In 2001 that cost was a about a third of what it is today as it has increased at two to three times the rate of inflation over the last 15 years. If you’re interested in politicizing the issue and blaming the Affordable Care Act (Obamacare) look elsewhere. Since it’s inception in 2014 the annual increases in cost have slowed to the lowest point since the good folks at the Milliman Group started publishing the Milliman Medical Index in 2001. If you’ve got an opinion and you haven’t yet read their 2015 issue, read it.  If you can’t take the ten minutes to do that, save your breath. This issue is too important for uninformed rhetoric.

What the data shows is massive, uncontrollable cost growth in almost every area for decades. Why? Because there’s something wrong with private medical care. It’s called profit. Take a pause here before you start with the anti-capitalist rhetoric. I’m a corporate stooge in my private life. I love profit and make a living growing it. But there’s one thing that my MBA and my years of corporate leadership experience has taught me.  Corporations are addicted to growth. And in industries like medical care, where you can’t and shouldn’t aim to grow it by increasing customers and massive efficiency gains aren’t really appropriate, you’re stuck with two options. Increase price by increasing demand or increasing services. There’s a reason why there’s more pharmaceutical ads on TV than beer commercials these days. They’ve become a consumer product. Which is a uniquely American thing. Advertising drugs is actually illegal in other countries

So what should do we be doing? It’s a dirty thing to say in America. But I’ve got worse scars than most because of this so I will. Forget about profits. Which means one thing. Yes-government run health care.

By now. it’s possible that you’ve stopped reading, posted something in the comments section of this article that screams angrily about communism or that “damn Obama”.  If you’ve made it back, perhaps it’s because you’ve realized that we do this all the time in areas that no one objects to. If we need to bring our founding father’s into this one, people who were raised a generation removed from when we were burning witches and still regularly bled people to death to get the “bad spirits” out of them, we can do that. Long ago those brilliant men set out to create a society in which “life, liberty and the pursuit of happiness” was a right, and in as much as government existed, it existed to enable the provision of these “self-evident” aspects of the human existence.  Since then we’ve deemed things like education, police and fire, utilities, national defense and even space exploration to be so basic to our ability to pursue happiness, that we’ve invested our pooled resources to enable it. How basic health care does not fit into that group is simply a function of how recent the gap of having it and not having it has widened as a result of technology and the regrettable outcome of our current political paralysis.

Right now, there is a senseless debate going on relative to the Affordable Care Act.  The schism in American views on healthcare runs right down party lines. Here’s the truth though. The Affordable Care Act is a miserable solution to a serious problem. But it’s what we have because the real solution is a single-payer system. Until we all cross that bridge of acceptance, which I am aware we probably never will, we all need to realize that the Affordable Care Act is the only solution to date that gives more people healthcare insurance than if it weren’t in place. And though that’s a massively low bar, and it will one day collapse under the spiraling costs of profit driven health care, it’s better than what anyone else is willing to do. Which is nothing in the name of liberty.

Doing nothing means that people every day make decisions about health care based on cost. People with families decide against the best health interest of their children because they can’t afford it. People with special needs children have to choose between working to receive benefits that provide their children with care, and participating in the care that only they can provide because someone else providing it is cost prohibitive. My family is one of those last ones. I’ll be transparent for the sake of making this point.  I have an autistic son. And I make choices for his care based on cost. I still have to choose. And I’m a “one percenter.”

You see it on your Facebook feed regularly.  Someone’s gofundme.com page asking for help for their family who did nothing other then get sick. If your thought when you see one is that those folks “ought to have prepared better” then you have no idea how much catastrophic medical care costs, and how high the out of pocket limits are for standard medical plans.

Nothing in the name of liberty is the solution that my family dealt with in our painful journey with my mother. It was a journey that still haunts me to this day. Every day, millions of Americans, even ones with healthcare insurance, are forced to make decisions about medical care because of cost. The idea that politics and profit are the two dominant forces in how we care for our American citizens is tremendously painful for those of us who have suffered under the current system.  The counter-point playbook to public healthcare usually involves the argument that American  healthcare is better than any of the other countries that have public health care. And that’s true. It is. But not because it’s private. Like our military, our space program, our police officers and fireman, it’s better because it’s American.

American public programs put a man on the moon before color TV existed. American public programs sent the largest invasion force in the history of mankind over the beach in Normandy. American public programs created nuclear energy and the internet. These are the things we can do when we all agree they need to be done. Comparatively speaking, administrating and funding a public health care system-not really that hard. Unless of course you want nothing, in the name of liberty. I pray you have a different outcome then my family did. Because nothing is what you’ll get.

 

 

 

 

 

 

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9 replies »

    • Sean, This piece made me cry and was so very beautiful. Your mom always had the most beautiful soul and was such an amazing woman. Thank you for writing such an eloquent piece.

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  1. Great piece honoring a great woman. I knew your parents during that happy time. They loved you with everything they had.

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  2. Our government isn’t authorized to run healthcare. Nor is it even capable. VA for everyone? Uh, no. Anyone who can’t handle liberty, and everything that comes in the box with it, should hardly need a map to find the door. The US is for liberty, not for children who still need a mommy after 18.

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  3. Is our Government “authorized” (by which I assume you mean, is it in the Constitution?) to run a space program? Or fund science through NIH and NSF? The Government can do whatever it is we agree that it should, via laws. As for capability, it’s American as apple pie to assume that anything Government-run must be wasteful, inefficient, and ineffective. But that’s not a face set in stone. Other nations manage to have effective, efficient bureaucracies, and they don’t necessarily stand in the way of “liberty.” A single-payer system doesn’t mean every doctor and nurse would be a Federal employee. If you take the time to learn about how other nations do it (yes, we don’t do everything better in America), you’ll probably find some systems that you could agree with and that preserve freedom of choice, without leaving people bankrupt.

    I suppose if you mean by “liberty” a complete lack of responsibility for your fellow citizens, well, we may as well get rid of schools, fire departments, police, municipal services, social security, regulatory agencies, FDIC, EPA, NIH, NASA…. all these wasteful agencies that do nothing but take from the makers and give to the slackers.

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  4. Having taken out a second mortgage and maxed out more than a couple of credit cards to make sure our autistic son had ABA, speech and occupational therapy in the days before insurance covered any of it, I know exactly what you’re talking about when you mention trade-offs. We were lucky, ABA worked out exactly as it should have, and now our son is a junior in college. Still, I lie awake some nights thinking of friends who didn’t have such great outcomes, and how they’ll be paying exorbitant care costs for the rest of their lives. Dumb luck determines so much about people’s health outcomes, and everyone who rails against a public option in the name of “liberty” is just rolling the dice hoping their own luck never runs out. Unfortunately, the odds catch up to all of us sooner or later, and I appreciate you sharing your story. Hopefully someone is listening.

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    • You wrote: … everyone who rails against a public option in the name of “liberty” is just rolling the dice hoping their own luck never runs out.

      That’s been my contention for a long time. Until it “hits home,” there’s “justification” for the rhetoric.

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