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He was my kid brother and he was a pain in the ass.  He was a narcissist, egoist (which was probably appropriate since he was also brilliant and strikingly handsome) and wildly lucky.  Career, beautiful wife, three knock-down gorgeous young children say it all.  He was lucky - until the day he was diagnosed with Amyotrophic Lateral Sclerosis (Lou Gerhig's Disease).

I asked him repeatedly if he was sure this was what he wanted, if he was sure he couldn't do it anymore.  He was adamant. So they pumped him full of morphine and turned off the ventilator.  I kissed him goodbye and I held his hand until I could no longer feel a pulse and his hand became cold.  And, just like that, my pain-in-the-ass little brother was gone at 39.

I'm no slobber-puss, but I'm crying even as I write this a dozen years later.  We were best friends from the start.  Mine was the hand he held at the park, or while leaving church so as not to lose sight of our folks in the crowd of big people.  Mine was the phone that rang when he needed money for tuition because he had procrastinated, and then forgotten, and the folks were out of town.  Ours were the huge philosophical discussions, frequently degenerating into raucous arguments.  Even at six feet, he was my little brother and I loved him with all my heart.  And this time, his big sister couldn't do a damn thing to help him.

It was a huge family tragedy.  One that is repeated everyday around the world.  They say one to two in every one hundred thousand of us will be diagnosed with ALS every year.  They suspect both genetic and environmental factors are to blame for this illness, but they still really don't know.  There are numerous on-going clinical trials that they hawk like barkers at the circus until patients are completely confused by the language and the science and the choices.  And the course of the illness is the cruelest imaginable.

So many years later, I think I can finally talk about the dirty little secret none of us could discuss back then.  My brother was gainfully employed by what it is politically correct to describe as a "large employer."  He had pretty good insurance and received the best care we could find from the best doctors we could find.  But his care was atrociously expensive.  

What I knew as I sat with him as he died was that he was facing his lifetime cap.  If you've never helped someone through a catastrophic illness you probably don't know that many insurers before now could cut you off after a set amount of money was spent - regardless of what care you still needed.  Thanks to Obamacare, that is finally prohibited.

The cost of my brother's care was astronomical.  From electric wheelchairs that supported ventilators, to travel to out of state medical centers to see specialists, to skilled care and special equipment at home.  Not everything was covered, but my brother had some resources.  Still, little would have been possible without the insurance.  And he had a very productive existence.  He adored his children and they adored him back.  Toward the end, his only means of communicating was by blinking in code.  One day I came in to care for him and he was clearly excited.  He kept blinking E.B.A.Y.I.P.O.D.O.U.B.  He had to repeat it several times before I finally understood he had bought stock in a company called EBay at their Initial Public Offering and it had doubled in value that first morning.  He was actually day trading by blinking for a tiny camera we attached to his computer screen that functioned like a mouse.  He was amazing.  And he was  perhaps not the narcissist he allowed people to think.  He knew the burden he would be to his family without the insurance coverage.  And so, I suspect primarily for that reason, he chose to refuse continued treatment and say goodbye.  

I honestly cannot imagine facing this illness, and many similar illnesses, without medical insurance.  I cannot imagine how patients facing catastrophic illness cope - even with Medicaid or Medicare and caring families, much less alone and with nothing.  

What I want to know is why it took so long for us to stop allowing the insurance companies to set all the rules, charge whatever they want, and so often abuse and neglect us.  This is not how a free market is supposed to work.  If you serve crappy soup, I won't be sitting at your lunch counter.  If you sew crooked seems, I won't buy your pants.  If you won't pay your employees a living wage, I won't shop at your store or eat in your restaurant.  

What if Obamacare happened a dozen years ago?  What if my sweet kid brother were still betting on IPOs and smiling at his children and blinking out emails to me?  It breaks my heart that he didn't live long enough to benefit from Obamacare.  According to the Department of Health and Human Services, 115 million people will no longer have lifetime caps thanks to the Affordable Care Act.  Approximately 28 million of those are children, some of them with lifelong chronic illnesses and/or disabilities that sap their family's financial resources as well as their strength.

Maybe you don't think it is fair.  But if you're one of those young invincibles facing the choice of purchasing insurance or paying a fine, please buy the insurance.  The only way we can pay for care for those who are truly in need is if we work as a community and pool a resource now and then.  You are the resource we need right now.  You are the resource that those with catastrophic illness will depend on as we move forward.

I still cry when I think of my kid brother, although I don't think of him everyday anymore.  I'm of an age when heartaches and tragedies begin to multiply.  But I miss him terribly, even if he was a damn republican.  I miss his intelligent conversations.  I miss his candor and his humor. I miss his sense of wonder about life and love and nature.  When I ask myself what he would have thought about the Affordable Care Act I can hear him roar that what the health care industry has done to us is NOT free market capitalism.  And that the ACA is at least one step in the right direction.   Just too late for him.

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